My MSA Journey

Post 46 - Some Things I'd Like to Change

2012-02-07T12:09:00.002-05:00

Having MSA means adapting to many life-altering changes – all of which require varying degrees of effort on the patient’s part. Some of these changes alter one’s life in the extreme - like difficulty swallowing, while others - like being easily startled, amount to nothing more than inconveniences. Whether major or minor, each symptom – and the patient’s response to it, has a life-changing effect. While I’m aware of many changes I’ve had to make over the past few years, there are several I wish would have turned out differently.

First, I really wish I had better balance, at least good enough to allow me to take a walk without the risk of falling. I really miss one of life’s little pleasures, especially since my condo, and, in fact, the whole city is so conducive to walking. It’s just not the same in a powered scooter or wheelchair.

Next, I’d like my voice back the way it was. Right now I’ve been reduced to a series of mostly unintelligible grunts and other noises. I can be understood, but it really takes a lot of very tiring effort to do so.

I also want my penmanship back, especially my signature which is now just about unrecognizable. I used to pride myself on my legible and neat handwriting – now it’s nothing but chicken scratch that even I can’t understand.

I would really appreciate some more manual dexterity. I’d really like to tie my shoes again and button my shirts without relying so much on Fran (who never complains or makes me feel disabled). Maybe I’d even be able to type one of these posts without making so many mistakes and taking so long time to correct it.

I’d like to change lots of other things while I’m at it but they’ll have to wait for another time – I don’t want to seem too greedy.

Lastly, Happy Valentine’s Day to all the wonderful girls in my life!

Post 45 – Another MSA Accommodation

2012-01-06T11:05:00.000-05:00

It wasn’t a Christmas present; its arrival during the Holidays was merely coincidental.

It seems that my 4-wheel walker – the same trusty appliance that has helped keep me reasonably upright for quite some time has been falling down (no pun intended) on the job. Even with the aid of the walker, I’ve been experiencing an increasing number of stumbles and falls, especially over the past few months. I’ve mostly landed on my left side – so far resulting in bruised and sore hips and elbows - but luckily nothing worse. Of course, it’s only a matter of time that my luck runs out and I do some serious damage, like a broken hip or leg, and sustain the side effects - like pneumonia - that go with them. After some gentle prodding from Fran and a difficult night of using a small-wheeled transport chair to go out to a local restaurant, I reluctantly agreed to look into a full-sized wheelchair.

My first , and what turned out to be my only stop, was to Craig’s List where I came across a light-weight Invacare “Patriot” model, supposedly in great shape since the owner claimed it was only used a few weeks. Before driving the 30 miles necessary to see the chair firsthand, I did a fast comparison check online and found the asking price ($125) was well below that of similar chairs in near-new condition ($650). So, with my daughter Deb at the wheel, I took a Christmas Eve day trip to Ft. Myers to check it out.

As advertised, the chair looked like it had hardly been used. I “tried it on for size” and was pleased to find the chair had originally been adjusted for a user about my size – only a little shorter – requiring an easy foot pad adjustment. Lastly, Deb was successful in sliding the chair into the back of our Hyundai Tucson. Fran, with my help if she lets me, should be able to manage. Within 10 minutes we were heading home with my purchase. Clearly it will take a definite change in current movement habits to make the change from walker to wheelchair.

My life continues to be one of an ongoing series of accommodations made to this damned disease: first a cane, then a walker, then next a motorized scooter, now a full- size wheelchair. I guess I’ve been reluctant to make each accommodation since I view it as another small surrender to the effects of MSA. It always takes me awhile until I finally realize – it’s all for my own good.

Finally, Happy New Year to All - especially to my fellow MSA travelers!

Post 44 - Belated Words of Thanks

2011-12-03T18:01:00.004-05:00

If I wanted to use the traditional Thanksgiving date to list those things I’m grateful for - then I’m about a week late with this post. But maybe it’s better to wait a week, so my words of thanks won’t seem contrived or matter-of-fact.

I’ve got plenty to be grateful for, but I want to use this post to especially thank the many people, mostly strangers, who have made my life easier, more convenient and certainly safer by their random acts of caring. Contrary to the stereotype of a public who only seems to “look out” for themselves, I have received nothing but genuine kindness from a wide spectrum of people: drivers who stop their cars in the middle of a shopping center drive lane allowing me and my walker to safely pass; teenagers who hold a door open so I can slowly go through; hostesses or waiters who patiently guide me to spacious seating via ramps instead of steps and then store my walker so it’s not in anyone’s way; and those people who have rushed to my aid when I fell, as recently happened when I stumbled getting out of a barber’s chair.

I could go on at length describing episodes like the above when I didn’t always have the opportunity to say thanks for the help. So, to all you folks who put your busy lives on hold for a moment to help make the life of a total stranger a little easier – THANK YOU so very much for your kindness.

I must also express my gratitude to all my friends who are always available to lend me or Fran a helping hand to do those tasks I used to take for granted. To all of you, thanks for offering to help and never giving the slightest hint that it’s an imposition.

Like Lou Gehrig famously said –“I feel like the luckiest man alive.”

Happy Holidays to all and Best Wishes for 2012!

Post 43 - XCell Resurfaces (sort of)

2011-11-10T11:49:00.007-05:00

Those of you who have followed this blog since its start in August of 2009 will remember its main purpose was to chronicle everything involved in my stem cell therapy at the XCell Clinic in Cologne, Germany in September of that same year. I started out very hopeful the treatment might result in a reversal or even a cessation of the symptoms associated with this nasty disease.

As it turned out, the treatment had little, if any, positive impact on my condition. As time went by after the treatment, I became more critical of the clinic’s operating methods, especially their patient follow-up procedures, which in my case consisted of one automated Christmas card and one, poorly worded questionnaire asking about my post visit condition. I quickly lost confidence in the accuracy of the survey when I realized that XCell listed me suffering from Multiple Sclerosis rather than MSA. I wrote and corrected them but never received an acknowledgment.

By now, most readers know XCell has closed their doors and filed for bankruptcy. I thought I had heard the last from them until a few weeks ago when I received an email message from one of the doctors who claimed he was a founder of XCell. He intimated that the problem was just a misunderstanding between the German Health Dept and XCell which would be resolved soon.

Rather than wait for this resolution to take place, this doctor proudly stated the remnants of XCell had joined a clinic in the Bangkok, Thailand area and would resume stem cell therapy procedure there.

I’ve concluded there must be a fortune to be made in “medical tourism” particularly stem cell therapy. Why else would XCell resurface so quickly in a location where regulations seem lax and medical oversight appears less strict than Europe?

Post 42 - To Laugh or Not to Laugh

2011-10-09T20:33:00.001-04:00

As it progresses, Multiple System Atrophy causes several interesting side effects that make life even more confusing and unpredictable. For example, I know I often start the first word of my opening comment much too loud and that it takes a few spoken words to determine the proper volume. I’ve also acquired something called a “startle reflex,” where I over-react to loud sounds or even the appearance of someone unexpectedly into the same room. Events like these cause me to “jump” and sometimes cry out in surprise.

Speaking of crying out, another of these effects deals with exaggerated emotional reactions: like crying at times after listening to a sad story or a TV show or - just the opposite - laughing out loud at inappropriate moments. I haven’t experienced the crying effect yet, thank goodness, but I will admit to the excessive or exaggerated laughter part. Just the other night, I made what I was sure was a hysterical comment to my patient wife, Fran, and found myself laughing out-loud like the village idiot. After realizing she was looking at me like I was insane, I finally realized I was over-reacting and was able to get a grip on myself.

I mention this because I had a scheduled 6-month visit with my neurologist last week, who asked, “What’s new.” After revealing my recent episodes of being easily startled along with boisterous laughter, the doctor produced a sample of - and a 6-week prescription for – Neudexta, a compound proven effective in diminishing these MSA side effects.

I guess I’ll give Neudexta a try. After all, I would like to overcome certain of these side effects before they become really embarrassing. But I think I’d like to keep the laughter effect, even if I’m the only one getting the joke. MSA can be pretty depressing stuff - a little laughter can be therapeutic.

ADDED: Jan 2012 - I neglected to mention I never did fill the Neudextra script. Came to the conclusion the relatively mild symptoms didn't warrant putting another drug in my body. Several months have passed and the symptoms haven't gotten worse, so I guess I made the right call.

Post 41 - A Temporary Sense of Accomplishment

2011-09-06T14:10:00.001-04:00

One of the greatest drawbacks of having MSA, for me, has been the difficulty or complete inability to perform tasks that used to be quite simple during what I now refer to as “my former life;” tasks I took for granted like climbing a ladder, washing and waxing the car, painting some wood trim (thanks, Lee), cleaning out the garage, and one of the things I miss most – driving. Now, just about everything gets done for me by a group of gracious friends and relatives (especially my wife, Fran) all of whom would rather do these simple tasks than pick me up off the floor if I try to do them myself.

Well, this past Holiday weekend I decided enough was enough and I would do some simple plumbing (it was Labor Day, which seemed somehow fitting). Actually, I wanted to remove the noisy toilet fill valves (3) and not only install new ones but add to each a dual flush mechanism to save water.

After convincing Fran that there was no risk of falling, I succeeded in accomplishing each job with a minimum of problems (the hardest part was climbing under each toilet to shut off the water and disconnect/reconnect the supply lines - the installation of the actual valves was “a piece of cake.” I admit there were a couple of awkward losses of balance and minor falls, but nothing serious. So, for the first time in a while, I was able to stand back and feel the satisfaction of doing something all by myself.

That sense of satisfaction lasted all of 20 minutes when I next tried to replace a beige telephone jack to a more fashion appropriate white one. No matter how hard I tried, there was no way I could wrap the tiny wires around the colored posts or keep the screwdriver head on the miniature screw heads. So, my obliging ex-phone installer friend Dave came to the rescue in a task that took him all of 5 minutes.

From The Thrill of Victory to The Agony of Defeat, all in less than a-half hour - at least the toilets are still working.

Post 40 - Status Check

2011-07-25T11:55:00.001-04:00

In preparation for my scheduled three month visit with my GP at the end of this week, I was taking stock of my current condition and listing any questions I wanted to ask him. I’ve learned to make the list ahead of time so I don’t forget something while speaking with him (I’m forgetting simple things more frequently as this disease progresses). While listing my current condition, I realized it’s been awhile since I compared the extent of my symptoms to earlier findings.

In Post #3 (Aug 2009), I felt my condition deserved a 4 out of a total of 10 with a 10 being the worst (completely dependent for care). In Post #23, seven months later (Mar 2010), I happily reported no significant deterioration and again felt my condition rated another 4. That optimism was short-lived, however, when just three months later in Post 26 (Jun 2010), I reported an overall deterioration of most symptoms, which realistically raised the listing to a 6.

Here we are in late July of 2011 – almost a year since the last time I offered a rating. First, let me state that my symptoms are basically the same as I spelled out in Post #3, nearly two years ago. With the exception of serious sleep disturbances, each of them continues – only worse. Judging on how much I’m depending on Fran and my friends for everyday assistance, I now feel my overall condition rates an 8. Fortunately, there’s no pain associated with this condition (unless, of course, I continue to fall, trip, or stumble).

My medication list hasn’t changed much – actually it’s been reduced:
B-12 injection (1x monthly)
Folic acid (in conjunction w/B-12) (2x daily)
Paxil (to avoid cluster headaches) (1x daily)
Florinef (for low BP) (1x daily)
Sanctura (for urinary issues) (1x daily)

I don’t anticipate my GP will change anything – either physically or pharmacologically – but who knows? I’ll post any changes.

Post 39 - How & Why This Blog Has Changed

2011-07-12T12:41:00.001-04:00

The original intent of this blog, which began almost 2 years ago, on August 4, 2009, was to describe my decision to undergo stem cell therapy and my selection of the XCell Center in Cologne, Germany to conduct the procedure - which I underwent in September of that year. In early 2009 when I first let it be known that I was considering such a procedure, I received quite a few requests for additional details. Instead of the time consuming process of replying to each questioner, I decided to create this blog where one comment would reach everyone.

Blog entries 1-8 covered the XCell selection/application process and tried to cover the many preliminaries leading up to the procedure. Entries 9 & 10 were written while at XCell and described the actual procedure along with some of the pleasant experiences in Cologne.
Entries 11 -22 were created every two weeks after arriving home, in which I covered what was happening to me physically – good or bad. For the most part, those 12 entries revealed no significant improvement in my condition, just continuation of a gradual decline.

In March 2010, the time between entries increased to one per month. This increase was decided on because I could no longer see a reason to report the “non event” of little or no positive change in my condition. I’ve continued the monthly sequence for a little over a year now and realize this blog has slowly changed its focus.

I can’t add anything more about the stem cell procedure I underwent 17 months ago. Frankly, I don’t believe it had any significant impact on my condition. I knew the chances for improvement were slim from the beginning, but couldn’t rule out that small hope the procedure offered. As for XCell, I am disappointed, at first by their lack of patient follow-up and simple research, i.e. how many MSA patients have received stem cell treatment and what do follow-up interviews reveal? And now, I’m very disappointed by the recent events which have led to their closure and filing for insolvency; events which portray the clinic as one run by medical opportunists who held out false hope to desperate patients.

From now on, I’ll simply report on my overall condition and some of the steps I take to try and maintain my health. I guess this blog has become something of a catharsis for me; a place where I can candidly discuss my condition and try to make some sense out of this weird ride I’m taking. You’re welcome to come along with me.

Post 38 - More on XCell's Closing

2011-06-23T11:41:00.005-04:00

A visit today to the XCell Center’s website reveals the addition of the following message:

“Dear Sir or Madam,
As you may have noticed, Cologne-based XCell-Center with branches in Cologne and Duesseldorf filed for insolvency. As of May 24, 2011, I have been appointed as a preliminary insolvency administrator by the court having jurisdiction. At the moment, business operations have been shut down, as the competent German advisory authority has denied further authorization for stem cell transplantation. The insolvency proceedings will probably open in August 2011. Every creditor will get an invitation to lodge a claim and further information by our office. I kindly ask for your understanding, that - due to the German insolvency law - it is not possible to lodge a claim before.
Hans Wolfgang Happe
Business Manager”

This filing for ‘insolvency’ apparently corresponds with filing for ‘bankruptcy protection’ here in America which calls for a court to review all claims of creditors or to approve the restructuring of a company’s debt. Since recent prospective patients to XCell apparently have paid ‘up front’ for stem cell treatment – it may take some time to recover all or part of their money.

I have included links to three websites which provide further clarification of XCell’s dilemma, including London’s Telegraph newspaper which published an expose in 2010 of XCell’s questionable claims and procedures.

http://www.telegraph.co.uk/news/worldnews/europe/germany/8500233/Europes-largest-stem-cell-clinic-shut-down-after-death-of-baby.html

http://www.bionews.org.uk/page_95103.asp

http://www.facebook.com/pages/Xcell-Center-Stem-Cell/165520020171016

Post 37 – XCell Center Suspends Stem Cell Therapy

2011-05-29T12:05:00.005-04:00

If you visit the XCell Center’s website today you will be greeted with the following message:

“Due to a new development in German law, stem cell therapy is currently not possible to perform at the XCell-Center. Regretfully for this reason, we must cancel your appointment until further notice. We will notify you for further updates about the matter.”

Upon checking further, I found a news blog - from Nature.com - which posted the following headline, dated 5/9/2011: Notorious Stem Cell Therapy Centre Closes in Germany.Rather than reproduce the entire article here, I have included the address of the blog site.
http://blogs.nature.com/news/2011/05/notorious_stem_cell_therapy_ce_1.html

In brief, the article reveals that the XCell Center took advantage of certain legal loopholes to extend its authority to conduct stem cell therapy from 2009 until 2011 when stricter regulations took effect and required XCell to secure state licenses. XCell has not secured this license which led to the order to cease operations.

In addition, the article states investigations are underway into the death of an 18-month old boy, and the near death of a ten-year old boy, both under treatment last year. According to the article, local public prosecutors are considering charges against an XCell doctor and the company’s management.

As a former stem cell recipient at XCell, I am extremely disappointed with these events and I look forward to the Center's response to the investigation. It appears, however, that the XCell Center may indeed be involved in fraudulent, or at the least, intentionally misleading activities.

What a shame that a score of MSA patients, along with many persons hoping to ease the ravages of other diseases, may have been duped by a group of unscrupulous medical mobsters.

Post 36 - Looking for Mister Grab Bar

2011-04-26T13:53:00.005-04:00

Little did I expect, almost three months ago, that an occupational therapist’s simple suggestion to have safety grab bars installed in my bathroom, would lead to a search rivaling that for the elusive Titanic in the middle of the North Atlantic.

My specific needs were straight forward and simple: two 18” bars mounted on tile in the shower and one bar located on drywall next to the commode. At this point you’re probably thinking - How difficult can it be to find someone with basic mechanical skills to drill some holes and securely anchor the bars to the tile/drywall? For a brief moment, I was even tempted to have a go at it myself until I realized that a power drill in my wobbly hands could turn into a lethal weapon. So I decided to do my bit to stimulate the economy and hire a local tradesperson.

First, I turned to the carpenter doing our modest remodeling who agreed and even bought a special drill bit to do the job. After a half hour of trying to drill one hole, he gave up and called in Mr. Grab Bar for consultation. This specialist took one look at the job and concluded the reason the drill wasn’t working was because they used the same thicker floor tile on the walls and any further attempt to drill might result in the tile cracking. Even though we eventually found that claim to be false, my carpenter asked not to continue the installation.

I next searched online and in the local Yellow Pages where I was surprised to find how many snappy company names my search would find, names like: Mr. Grab Bar, the Grab Bar Guy, and Get a Grip, along with the more mundane sounding, Grab Bar Specialists. With all those installers to choose from, my search should soon be over. That was over a month ago. Meanwhile, I'm still depending on the-none-too-reliable suction cup number that may loosen and unceremoniously deposit me on the shower floor.

The Grab Bar installation business must really be booming because most of the companies took my recorded inquiry but never bothered to call back. Fran and I also visited a kitchen/bath showroom which seemed promising until they planned to charge us what I’m sure what was one month’s building rent for the job.

Before total surrender, I decided to try Mr. Grab Bar’s nationwide 800 number where I spoke to a friendly young lady who assured me a local representative would call me shortly with more information. Sure enough, a different local Mr. Grab Bar called and an appointment to install the bars has been set for May 1st. Now let’s hope Mrs. Grab Bar doesn’t plan something else for that day. Keep your fingers crossed!

Update: 5/2/11 Success! Mr. Grab Bar (Chris) arrived on schedule today and successfully installed a total of four permanent grab bars; three in the shower area and one near the commode. Problems with the thick tile were avoided by drilling the anchor holes into the grout lines between tiles. The bars are super strong and make showering much safer. The suction cup bars I had been using were in the trash by day's end.

Post 35 - Odds and Ends

2011-03-25T13:39:00.008-04:00

In February, I titled blog entry 33, ‘Can We Please Cancel 2011,’ because it seemed that everything medical was going wrong for both me and my wife, Fran. Between my three visits to the ER for two urinary infections and an intestinal blockage, and Fran’s pending shoulder surgery, January had started the New Year off on a decidedly low note.

Fortunately, events of the past month or so have pretty much chased that January ‘black cloud’ away and restored some order to our lives. Here are some particulars:

First, Fran’s surgery went well and she’s just about finished up with her PT. We have to thank a lot of friends and neighbors who helped out while Fran was out of action. Most of all, we have to thank our daughters, Deb and Lee, who put their busy lives on hold and came down to Florida and gave their Mom and Dad four weeks of incredible care. Thanks girls, don’t know what we would have done without you both. (Note: We just learned Fran will probably need knee surgery in a few weeks. We’re told that this surgery should thankfully be much less involved than the shoulder with a shorter PT duration.)

Next, when my GP visited me in the hospital (I stayed one night after the intestinal blockage) he decided to arrange for a few home services. First came an occupational therapist who surveyed our condo home and made safety suggestions (grab bars, bed rail, raised toilet seat, correct use of walker, etc.) Next came a home health aide (2x weekly) who helped me with functions like bathing and dressing. And finally, a physical therapist (2x weekly) who not only guided me through in-home exercises but also devised a regimen of exercises I can do in the condo’s pool.(I’ve been trying to do them every other day). I don’t know if the pool exercises are having any positive effect on the MSA but I know that they feel good and maybe are helping remove the ten pounds I’ve gained since January 1st.

I should also mention that my new neurologist has ordered 6 weeks of speech therapy to help preserve my voice, speak clearly, and swallow correctly. I’m glad for such therapy, since my voice fades out often, and I’m finding simple swallowing a little more difficult. I just need to be more diligent doing the exercises.

Finally, the last therapeutic device came as a bit of a surprise. Apparently my GP noticed my trouble walking, even with a walker, when I showed up for my February office visit. Before I knew it he had filled out the paperwork and I was called in for a fitting for a scooter. About a week ago I received a Golden Industries Buzzaround; a three wheeled little red number that tops out at a feisty 5 mph. So far, I’ve used it only in our condo complex to get the mail and go to the pool and gatherings at the clubhouse. But soon we’ll venture out, perhaps to a store or park which should be no problem since the scooter easily breaks down into five manageable pieces.

So, after a lousy start, maybe 2011 won't turn out so bad after all.

Added April 10th: Good news for Fran. Surgery not needed on her knee after all. MRI showed arthritis rather than a tear. Some directed PT should lessen the discomfort.

Added April 27th: My earlier ‘”good news” comment above about Fran turned out to be somewhat premature and inaccurate. After little success with physical therapy and other non-invasive methods, Fran’s orthopedist recommended arthroscopic surgery on her right knee which took place on April 17. The procedure, according to the doctor, involved scraping away some arthritic material and trimming up torn cartilage and was a complete success. Fran is going thru a few weeks of physical therapy and, while uncomfortable, she should be back in good shape soon. Thanks again to all our friends who helped us out during this latest episode.

Post 34 - MSA Awareness Month

2011-03-03T11:42:00.000-05:00

I like to change the focus of this month’s blog entry from my own personal experiences with MSA to a topic that involves the thousands of people across the country who suffer from this rare and deadly disease.

One of the most common problems a person finds as they seek treatment for this disease is a lack of knowledge and understanding by the medical community about the specific nature of MSA and the unique needs of the patient. Perhaps it’s understandable for a doctor who has never seen a case of MSA (most physicians go through their entire career without encountering one – my GP hadn’t) to either fail to diagnose or worse yet, misdiagnose. In fact, many MSA patients are initially diagnosed with either Parkinson’s disease or Multiple Sclerosis, misdiagnoses which results in a loss of valuable treatment time and often counterproductive medical care.

For the first time, an organized effort is underway to heighten MSA Awareness, not only to the medical community but the public as well. To focus attention, March has been designated as MSA Awareness Month. A comprehensive website, www.msaawareness.org has been created as a central resource for physicians, interested parties, and most importantly, patients. This website also acts as a central location where supporters can learn about research, how to make contributions, or simply “spread the word.“

I urge everyone to visit the website and browse through its well arranged content. No matter whom you are: patient, physician, caregiver, relative, or friend - you’re sure to learn more about Multiple System Atrophy and how you can help spread awareness about this debilitating disease.

Post 33 - Can We Please Cancel 2011?

2011-01-29T12:39:00.001-05:00

Would any of you mind very much if we cancelled 2011 and skipped right to 2012? I ask because if January is any indication of how the rest of the year will turn out, I don’t think I can handle eleven more months of similar excitement.

I started off January wondering if a stroke was looming after a couple of TIA-like episodes had my family doctor guessing some blood vessel debris had broken loose and caused a momentary blockage. However, a visit to my neurologist a few days later drew a different and unexpected diagnosis; a cluster headache bringing about symptoms that mimic a TIA – but doesn’t have anything to do with an actual stroke.

Things were pretty uneventful until the 21st when the next adventure began. Seems like I couldn’t, as my father used to say, “pass water.” After two unsuccessful days of waiting for nature to solve the problem, I made a late night visit to the local emergency room for some very welcome relief. They even presented me with a gift – my very own Foley catheter which I have to leave in place for several more days until my urologist returns from vacation.

Maybe I’ll wait to see how February turns out before pushing to cancel out the rest of the year.

Post 32 - An Interesting Holiday Surprise

2010-12-29T08:31:00.000-05:00

Holidays are such an exciting time of year. Families gather, friends drop by, everyone eats too much, and despite being serious grownups, we still hope Santa has something special in his bag for us. I must have been a very good boy this year, because Santa came through with some great stuff, like an amazing Apple iPad and a small, self contained fish tank to continue the hobby I’ve had since childhood.

There was one Holiday surprise, however, that was not only unexpected, but definitely unwelcomed. A few days before Christmas, I was in our kitchen having a pleasant conversation with our youngest daughter, Lee, who was visiting from NYC. I noticed I had a strange headache which came on very quickly, wrapped sharply around the entire head and, after a short while, completely vanished. Next, in the middle of the conversation, I suddenly began to slur my speech and lose the ability to articulate my words. In a few seconds, I had become basically unintelligible. No pain involved, just some vision disturbance (blurriness, difficulty focusing). This situation lasted for about twenty very anxious minutes until most of my speech returned and my vision cleared.

Fortunately it was a business day so everything was in place for my family doctor to order a CAT scan and carotid artery scan within a few hours of the event. Shortly after the tests, his office called to tell me the scans were both normal and I should see the doctor in a week. That visit was yesterday when the doctor revealed I probably had a TIA or mini-stroke. These TIA’s don’t always leave evidence behind so his opinion is based on an evaluation of the symptoms and experience with other patients.

If that diagnosis is correct, I believe this wasn’t my first TIA episode. About a week earlier we joined our friends for a few days at DisneyWorld. At breakfast the first morning I experienced the same type of sharp and sudden, whole-head pain with visual disturbance. My speech, however, was no worse than usual. That episode lasted about twenty minutes, as well.

My doctor said something yesterday that really surprised me. I assumed these TIAs were somehow related to my overall MSA condition. Not likely. In MSA, the brain sends out faulty signals causing problems with balance, speaking, swallowing etc. A TIA is most often caused by either a ruptured brain blood vessel, or a piece of plaque that has broken loose from a blood vessel wall. I fit in the second category. Thank goodness for small favors. Unfortunately, experience has shown that once TIAs start, they’re likely to continue, although it’s impossible to predict their severity. So, the New Year shapes up be more interesting than ever.

Speaking of the New Year – may 2011 bring health and happiness to you all.

Finally, I plan to keep this blog going for as long as I’m able or while I have something meaningful to say. Thanks very much for your interest, kind words, and prayers.

Post 31 - A Neurologist's Opinion of Stem Cell Therapy

2010-11-24T13:02:00.001-05:00

During the lengthy interview process with my new neurologist, I mentioned how I underwent stem cell therapy at the X-Cell Center in September of 2009. The physician, a specialist whose practice is limited to the treatment of Parkinson’s disease and other diseases of the autonomic nervous system – like MSA – made the following comment: “While stem cell therapy may eventually be of value in treating nervous system disorders. I don’t know of a single case where it has stopped or reversed these diseases. Until more research is done on the effectiveness of stem cell therapy – tell your fellow MSA patients to save their money.”

No beating around the bush here. That’s what I like about this new doctor – he lets you know what his opinion is. Do I agree with him? It’s hard to say. I do know that my condition stayed the same (plateaued) for nearly a year after the treatment. Was that due to the therapy or would it have happened anyway?

Would I do it again? Probably yes. If not, I’d always wonder if stem cell treatment was the answer to this “miserable disease.”

Post 30 - New Doctor/New Plan

2010-11-24T12:59:00.001-05:00

It turns out that the decision to donate my brain for research has produced some interesting and positive side effects. While completing the extensive donation application, I reached a section asking for information about my treating physicians. After listing information on my family doctor, who I see every 3 months, I was about to identify my neurologist when it occurred to me that I hadn’t seen him since 2008 and perhaps it was time for a follow-up visit. It came as quite a surprise to learn that he is no longer practicing and in fact has left the area. Time to search for a new neurologist.

Now that I know a lot more about MSA than I did in 2008, my search centered on neurologists who specialize in diseases of the autonomic nervous system. Fortunately, I found a local doctor whose practice is limited to Parkinson’s disease and other movement disorders. My first office visit was certainly thorough; over two hours of interview, tests, and treatment suggestions. For the first time in this entire ordeal, I found a doctor who went beyond the usual “we’ll treat the symptoms of MSA as they arise” to “let’s do something to slow the progress of this miserable disease.”

First, he arranged for a speech therapist to evaluate me and develop a plan of action to strengthen my voice and articulation but more importantly to prevent entry of food or drink into my lungs which is common for MSA patients causing aspiration pneumonia. That evaluation included a swallowing exam which used a fluoroscope to watch how I swallowed certain types of food and beverage. Starting December 1, I will see the voice therapist twice a week for 6 weeks.

Second, I am awaiting a visit from an occupational therapist who will inspect my home and suggest ways I can install or improve safety features for everyday living.

And finally, the doctor prescribed a new medication, Florinef, which should help control those 30 point drops in blood pressure and the dizziness I feel when standing up.

Needless to say, I am very pleased with this new treatment focus. I really believe that between the positive approach of this new neurologist and care and concern of my family physician – I have a team that will help me combat the debilitating effects of this “miserable disease.”

Post 29 - If I Only Had A Brain

2010-10-23T13:05:00.001-04:00

Anyone familiar with classic movie trivia recognizes the title of this post as a take-off on the request of the Scarecrow for the Wizard of Oz to grant him a brain. Like him, I’d sure welcome the opportunity to swap my somewhat defective model for a new or gently used one. Then again, with my luck I’d probably get the executed criminal’s brain from the movie Young Frankenstein (remember Abby Normal?) so I’d better be careful what I wish for.

The reason this blog entry mentions the brain is because this past week I set into motion the donation of my brain to the Brain Endowment Bank at the University of Miami. I did this because it seems that a definite diagnosis of MSA can only be reached after a microscopic examination of brain tissue. Such an examination will hopefully answer two important questions. First, was the original diagnosis of MSA accurate or was my condition due to one of the several diseases that share some of the same symptoms as MSA? And second, if the disease wasn’t MSA, was it a genetic condition that my daughters or granddaughter should know about for future treatment options, if necessary?

I suppose something else prompted me to make this decision. I’d really like to think that there’s a part of me that may actually help medical researchers develop an effective treatment or even cure for MSA or related conditions. What a great legacy that would be.

For more information about the Brain Endowment Bank go to: http://brainbank.med.miami.edu/#

Post 28 - One-Year Anniversary

2010-09-15T10:22:00.002-04:00

It’s exactly a year since I traveled to Cologne, Germany and underwent stem cell therapy at the X-Cell Center for Regenerative Medicine. Earlier entries on this blog have described how decisions were made, what the process involved, and what, if any, benefit was obtained. I’ll repeat here I have no regrets I went thru the therapy – either financially or emotionally. I would do it again “in a heartbeat.” Sure I’m disappointed the results weren’t more dramatic or long-lasting, but that may have been due to the low count of stem cells obtainable from my bone marrow. I do think the therapy may have helped me “plateau” for almost a year before further decline.

I also said in an earlier entry that I would speak candidly about my experience with the X-Cell Center. My strongest criticism at this point involves the X-Cell Center’s need to improve their “customer relations,” especially post-treatment. To date, I have received just two messages from X-Cell since the treatment; one was an automated Christmas message, while the other was a simplistic survey seeking my input about any after-effects the treatment may have caused. The survey, unfortunately, was directed to someone suffering from multiple sclerosis – not MSA. I noted this in my return correspondence, which was never acknowledged. X-Cell needs to pay more attention to follow-up patient studies, surveys and research. By doing so, they would help dispel comments alleging they’re just medical opportunists capitalizing on the fears of desperate clients.

Now for another issue I call The Exercise Dilemma. In Post #26, I mentioned my decision to begin an exercise program with the goal of warding off or delaying the muscle atrophy that accompanies MSA. I described the fully-equipped fitness center at our condo and how I would begin a program to keep up my muscle tone and general wellness. The fitness center is equipped with treadmills, stationary bikes, elliptical machines, and the usual array of torturous devices. I chose to begin my efforts with some time on the treadmill, alternating on the stationary bike, and interspersing a few reps each day on the weight bearing machines.

The treadmill went fine, as did the reps on the other machines. I was a little achy and tired afterward, but that was to be expected. What I didn’t expect was my reaction to 15 minutes on the stationary bike a few days later. When I finished and tried to walk to one of the other machines I found my legs had turned to rubber. I could barely stay standing and really needed my walker to make it back to the condo. It’s taken a few days of rest to recover. In the future, I’m going to follow my daughter’s advice and emphasize the weight-bearing machines to slowly build up strength, rather than machines that stress cardio exercise, like the stationary bike. With any luck, I’ll eventually get into shape like Gerry N., my fellow MSA-traveler here in SW Florida, or maybe even like the envy of everyone in New Bern, NC – my former YMCA partner, Gene D.

I’ll be back in a month or so – if the exercise doesn’t do me in first.

Post 27 - Two Promising Developments

2010-08-02T10:46:00.004-04:00

Published reports this week revealed two significant developments, one with stem cell implications, that may have a positive impact on MSA sufferers. In the first, published in the July 29 edition of Circulation Research (American Heart Association), researchers at the University of Miami reported injecting stem cells directly into the hearts of pigs damaged by heart attacks. Within two months, researchers said, the stem cells made the pigs’ hearts, “good as new.” One researcher said within a decade similar therapy might be available for other organs, including the brain. In the second study, published in the latest edition of Nature (thanks, Vic), researchers have found a molecule that causes nerve cell death in the brain that sparks Parkinson’s – and hope they can soon stop it in its tracks. Since Parkinson’s and MSA may share underlying causes, it is hoped advances found in this research can be used to combat the nerve malfunction associated with MSA.

I am particularly heartened by the stem cell research from the first study and the dramatic results it had on diseased pig hearts. As mentioned in this blog several times before – I firmly believe stem cell research is on the verge of remarkable regenerative breakthroughs which will eventually conquer the devastation caused by MSA. Let’s hope meaningful research like the two studies noted here continue to make headlines until that cure is developed.

On another matter, I had a tough decision to make this week. I was asked whether I wanted to teach my American Presidents/First Ladies program again this fall and winter. Because my overall condition continues to deteriorate – in particular my mobility and my vocal dexterity – I felt it wouldn’t be fair to commit now and then need to cancel when classes begin. So I declined. I really hate this disease and how it continues to steal away so many of life’s little pleasures.

Added 9/1/2010 - Another promising development - Today’s newspaper carried the following article: “Author J.K. Rowling (Harry Potter series) has given 10 million pounds ($15.4 million US) to set up a center to research multiple sclerosis, the disease that killed her mother. The Anne Rowling Regenerative Neurology Clinic, based at the University of Edinburgh in Scotland, will also study other degenerative neurological conditions. Rowling said she hopes the clinic will become a world center for excellence in the field of regenerative neurology.”
Kudos to Ms Rowling for this remarkable act of philanthropy. In my humble opinion, regenerative medicine holds the key to unlock the mystery of MSA.

Post 26 – Concluding My “Noble Experiment”

2010-06-27T17:48:00.003-04:00

Almost one hundred years ago, America decided to fight the problems associated with alcoholism by banning the manufacture and sale of liquor. No one knew for sure whether Prohibition would succeed, but many believed it was at least “worth a try.” Thirteen years later, when Prohibition was considered a failure and had been repealed, observers came up with the term “Noble Experiment” to describe how good intentions don’t always turn out the way one hopes.

In a way, the stem cell procedure described in this blog might be considered my own Noble Experiment. Almost a year ago, I chose to face the problems associated with Multiple System Atrophy (MSA) by undergoing a procedure that uses one’s own stem cells to replace those cells affected by MSA. Nine months ago after I underwent treatment at the X-Cell Center in Cologne, Germany, I had high hopes the procedure would stall or maybe even reverse the effects of MSA. Even though the results were unpredictable, I figured it, like Prohibition, was “worth a try.”

Despite the treatment, I must report an ongoing deterioration in my overall condition – especially in my mobility. I am finding it very difficult to move around, even with a cane. I’m using a walker more and more both in and out of our new condo, mainly to avoid my greatest fear – a fall and broken bone. My other main complaints include a significant drop in blood pressure upon standing, frequent light-headiness brought on by simple movement/bending, poor speech volume/articulation, and somewhat diminished mental cognition. Overall, I’d say I’ve progressed (or regressed) to the mid-stages of MSA with a new rating of 6 with 10 being the worst.

Frankly, I feel that whatever benefit I may have gotten from the stem cell procedure is no longer a factor. I seem to be following the same general path so many other MSA patients have gone down before me, although I’ve wondered why the disease progresses more slowly in some than it does in others. I can’t be sure – but I think exercising and trying to stay fit (both physically and mentally) plays a major role.

So, I’ve decided to change the focus of this blog from one of sitting around waiting for my supercharged stem cells to save the day, to one taking a more active role in improving my own condition. Last month’s entry mentioned our move to a condo with a well-equipped fitness room. I plan, with help of the resident trainer, to develop a sensible exercise program aimed at staving off the atrophying effects of MSA.

Who knows, this may turn out to be just another Noble Experiment with little likelihood of success, but I figure its still “worth a try.” I’ll be back in a month or so with more on the exercise program.

Finally – to those of you still deciding whether to follow the stem cell path please don’t let my lack of long-term positive results dissuade you. I still believe medical science will eventually unlock the mystery of MSA through improvements in stem cell technology. Let’s hope that day is near.

Post 25 - Eight months after treatment

2010-05-17T10:48:00.000-04:00

Living with MSA eventually requires you to come to terms with the fact that life now involves an ongoing series of concessions. While these concessions may be hard to accept at first, eventually reality prevails and you realize they must be made for safety reasons. Probably the biggest concession I made came almost two years ago with the realization I needed a cane to steady myself and prevent falls. Next, I grudgingly conceded I got less fatigued if a wheelchair was occasionally used in airports, museums or other places where a lot of walking was involved. The latest concession came this past month when my primary care physician saw how my balance and gait had deteriorated and wrote a prescription for a rollator (which is four-wheeled walker with hand brakes and a fold down seat). Funny, but once I accepted the cane, the other concessions have all been easier – I fear falling and breaking a bone much more than I care how I appear to others.

As mentioned, I saw my primary care physician last month and while he didn’t change anything except adding the rollator, he did increase the frequency of my visits from six months to every three. My guess is he senses my condition may be changing and he needs to monitor it more frequently. I can’t argue with that logic.

Aside from the increasingly difficult balance/gait the only other concern right now is my voice clarity and articulation. Both seem to be somewhat worse.

Finally, my posting next month will come from our new condo on which we close in about a week. I’m really looking forward to the move which includes use of a nicely equipped fitness facility and heated pool. Now I’ll have no excuse not to get into better shape and try to stall the physical effects of this ridiculous disease. Who knows, maybe there are still a few stem cells lurking around that need a mission.

See you in a month – if the move doesn’t do me in first.

Post 24 - Seven months after treatment

2010-04-17T07:21:00.001-04:00

There’s been a change in my overall status – and I’m sorry to say it isn’t for the better.

My balance and gait have declined noticeably over the past month. I’m having a difficult time walking and have come very close to a major fall on several occasions – in fact one did occur while cleaning and storing a pool cover. Everything was going well until I carried the cleaned and folded cover toward an equipment closet, lost my balance and fell right into the pool. Thank goodness it was a soft, albeit wet, landing.

I’m guessing that some of this problem stems from the fact I’ve been more physically active this past month. We have sold our house and I’m doing lots of things in preparation for the move. I’m probably trying to do more than I should and need to be more careful – I definitely don’t need a broken bone or other injury. I’m hopeful when the move is concluded in June, and I get into a more normal routine, the balance/gait issue will improve.

Otherwise – all other “systems” are about the same. See you in a month

Post 23 - Six month summary

2010-03-19T17:11:00.000-04:00

It’s been six months since I traveled to Cologne, Germany for stem cell therapy at the XCell Center. I decided to wait a full six months before summarizing whether the therapy had any effect on my condition. The six month decision was prompted by the statement from XCell that any results, if they occur, may take six months or more to materialize. That said; let me try to sum things up.

In August of 2009, in blog entry #3, I listed my condition at that time, a month before undergoing the stem cell procedure. Perhaps it would be best to make some before/after comparisons to help judge the success of the therapy.

Overall, I still feel I’m in the early to mid-stages of MSA. On a scale of 1-10 with 10 being the worst, I continue to rate my condition as a 4. Individual comparisons are as follows:
• Gait/Balance – I think my ability to walk straight (or even stay upright) is slightly worse than before – especially if I try to turn too quickly. Fortunately, I haven’t fallen yet, but have come close several times. I continue to constantly rely on my cane. I’ve found that certain surroundings or situations affect my balance more than others. For example, big stores with high ceilings really throw my balance out of whack as does trying to walk sideways to my seat in a theatre. I’ve also found that anything more than a small glass of wine really messes up my balance. And, I’ve learned something unusual about walking – the faster I walk, the straighter I go. Slow down or stroll and I’m all over the place.
• Occasional misplacement of left foot – Before, I would sometimes drag or scrape my left foot on the floor while walking. Haven’t done that in months.
• Leg muscle weakness – My legs still become “wobbly” and tired after exertion, especially if some bending or squatting is involved. No worse than before.
• “Coat Hanger” discomfort in neck/shoulders has intensified somewhat. It’s more like a “tingling” sensation rather than pain – localized in the rear-center of the neck. Hot showers and a neck massager really help.
• Urinary frequency/urgency (neurogenic bladder) - Some modest improvement here. Don’t have many “urgent” episodes. Frequency a bit less often too. Still need to get up several times a night, even with a nightly Sanctura capsule.
• Bowel function – Thankfully, not a serious problem.
• Loss of manual dexterity – about the same – I’m still frustratingly clumsy.
• Decreased libido – No change
• Sleep disturbance – This is one area I’m happy to say is no longer an issue. I don’t sleep for that long (average – 5/6 hrs) but I’m no longer “acting out”.
• Fatigue – Not quite as bad as before – still take an afternoon snooze, but I’ve always been a “napper” which is probably a holdover from my police days when shift-work forced one to grab a catnap whenever possible.
• Feeling of thickness in throat – Once in a while my voice cracks while speaking and throat feels congested. The problem responds favorably to speech exercises.
• Word enunciation – Recently I’ve developed a problem pronouncing certain words, especially multi-syllable ones. Feels like the muscles in my lips and mouth won’t form correctly. People have no trouble understanding me – but I can clearly feel the difference.
• Orthostatic hypotension – There’s been significant improvement in the big drop in blood pressure I experienced before the treatment. My pressure used to drop 30 or more points upon standing – now it’s no more than 20 points and I’ve had very few episodes of dizziness. I have been wearing knee-high pressure socks more often which probably helps.
• Diminished mental acuity – This is a hard one to describe. I just don’t feel as “sharp” as I used to – especially in decision-makings situations. This was becoming apparent before the procedure. I have a doctor’s visit in April when I’ll ask about reducing the strength of the anti-anxiety medication (citalopram) I began when first diagnosed with MSA in Nov 2008. I think there might be a correlation between this drug and my mental “sharpness”.
• Temperature sensitivity - This is something I haven’t mentioned before. I’ve become much more sensitive to temperature extremes – especially hot, humid weather. I’ve learned not to do any exertion outside here in SW Florida if it’s over 85 degrees – which it is practically six months a year. I came close to heat stroke before I realized my internal body “thermostat” is malfunctioning.

Before stem cell therapy, I listed my three greatest concerns - and the ones I hoped the procedure would improve: 1) disturbed balance/gait, 2) urinary issues, and 3) orthostatic hypotension. As of today, I will replace orthostatic hypotension in the #3 spot with concern over voice/throat-related issues. I really hope that’s a problem that doesn’t worsen.

Finally, how do I sum up these last six months and the overall result of my stem cell therapy? First and foremost, I’m glad I found the XCell Center and underwent the procedure. At a time when I was being told there was really nothing available to treat multiple system atrophy – the potential benefits of stem cell therapy offered a small ray of hope in an otherwise bleak scenario. XCell didn’t claim they would cure my condition – but would provide me with the latest in regenerative technology. I’m confident I made the right choice.

While initially I was hoping for immediate, dramatic results, it soon became clear that any positive effect would be of a gradual nature. That’s why I can’t be sure how the procedure has influenced my overall condition – no more than I can predict what I’d be like today had I not undergone the treatment. Simply stated, in some areas I’ve improved – in others I haven’t.

There’s another aspect of this entire procedure that has to be taken into account. Due to a longtime low blood count, the number of stem cells taken from my bone marrow was also low - 700 thousand versus the normal 2 million or more. If my results don’t meet expectations – that deficiency might be the cause (XCell told me of this before the procedure).

To those of you trying to decide whether stem cell therapy is right for you – I hope I’ve provided a helpful, firsthand account of what the treatment actually involves. I plan to continue these posts, but on a monthly rather than bi-weekly basis. I’m still confident that stem cell technology will eventually unlock the mystery of this debilitating disease and allow all of us to enjoy long and active lives.

Good luck to each of you. Don’t hesitate to contact me if I can answer any other questions.

Post 22 - Twenty-four weeks after treatment

2010-03-06T08:32:00.000-05:00

Another two weeks have sped by as I approach the six-month milestone of my stem cell treatment at the XCell Center. Nothing noteworthy has occurred during these last two weeks but I would like to make an observation.

In Post 19 – I mentioned how my voice improved (stronger, clearer, etc.) after presenting a weekly class in an Elderhostel-type setting. Based on that, I speculated that continued exercise of any type might just help the body slow the progression of this disease. I bring this up again because now that my class is over and more than a week has gone by – I have noticed that my voice is less “agile” than it was while still teaching. It seems a little weaker and I’ve already experienced more “throat-clearing” episodes.

What’s my point? The saying “use it or lose it” may especially apply to those of us with MSA. The longer we’re able to challenge our bodies (and voices) with safe, beneficial exercise, the longer we’ll be able to experience active lifestyles. So, if you’re anywhere near my home here in southwest Florida and you hear sounds similar to a trapped animal – don’t be alarmed – it’s just me singing along with Elvis.

I’ll be back in two weeks with a summary of my entire XCell experience at the six-month mark.

Post 21 - Twenty-two weeks after treatment

2010-02-20T07:55:00.002-05:00

Time really does fly! I can’t believe it’s been two weeks since my last entry and 22 weeks since my stem cell treatment at the XCell Center. I guess the rapid passing of time is a good thing because it means I’m staying active and involved instead of sitting around feeling sorry for myself.

The little improvements keep coming. The orthostatic hypotension (lightheadedness upon standing) has really lessened, as has the former big drop in blood pressure after standing. My pressure used to regularly drop 30 or more points where now it’s a 20 point average drop or less. Afternoon fatigue is also a bit less frequent - don’t need to take a nap every day. If I could only sleep a little longer at night, I think the energy level would really improve (I’m averaging 5-6 hours each night). Happily, my voice remains strong – got thru another 4- hour teaching session this week with no problem. Gait is no worse – still need a cane to guard against falls.

I’m pleased with what can best be described a “modest” improvement in my overall condition since the treatment. No spectacular change – just a general feeling that perhaps the stem cells are finally taking hold. Four more weeks until I reach the six month mark.

Hopefully, more progress to report in two weeks.

Post 20 - Twenty weeks after treatment

2010-02-06T10:30:00.000-05:00

It’s February 6, 2010 – almost five-months since my stem cell therapy at the XCell Center.

Back when I started this blog in August of 2009, I hoped by now I’d be reporting a marked improvement in my overall condition. To be honest, I can’t make that definite of a claim. I can, however, report that my current MSA status has not worsened over these past months and, in fact, some small, positive steps have been observed. First, the urgency/frequency situation has improved – not as many visits to the restroom. And second, as I reported in a previous entry, my once weak and strained voice has returned to almost normal. Otherwise, everything is about the same.

Is it time yet to pronounce whether the stem cell therapy has been a success or a waste of time and money? No – not yet. I plan to wait the full six months (mid-March) before trying to sum it all up.

On another note, I was sorry to read Vic’s entry on the Shy-Drager Support Group website noting that his wife Wanda’s condition has deteriorated in the six months since her XCell treatment. I agree with Vic’s concern that XCell has not followed up or made any contact since the treatment. Aside from an electronic Christmas card – I haven’t heard from them either. By their silence, one is forced to conclude the overall, cumulative findings may not be favorable. Since they make a point of stating that any results may take up to six months to appear – there should definitely be a six-month status check with each patient.

More in a couple of weeks.

Post 19 - Eighteen weeks after stem cell treatment

2010-01-22T10:18:00.003-05:00

While I would prefer great positive strides in my fight with MSA, I appreciate even small steps in the right direction. One of those small steps is what took place this past Wednesday.

In my last entry I mentioned a concern that my condition might prevent getting through the two, back-to-back Elderhostel classes I present at a local college. I was especially concerned my voice would give out and I’d be forced to cancel the classes (dysphasia – throat/voice impairment is common with MSA). Well, after about an hour into the first class, I thought my fear was materializing. My throat suddenly felt constricted and my voice began to fail. A few gulps of water and a throat lozenge had little effect. Then, after a quick break, some strenuous throat-clearing efforts, and a few more sips of water, the constriction suddenly relaxed and I was able to continue. Thankfully, the problem did not recur during the afternoon class - in fact, by the end of the day my voice seemed stronger and clearer than it’s been in months.
(Added 1/27/10 - Finished my second Wednesday of classes. Throat and voice stayed strong throughout the full four hours).

The lesson I’ve learned from this episode is – if at all possible – keep exercising the areas that are most commonly affected by MSA to slow their deterioration. Try to walk, lift weights, exercise, sing, dance, and do whatever you can to postpone the atrophy that makes this disease so frustrating.

Speaking of frustration – I spoke last time about enthusiasm vs. fatigue experienced by most MSA patients – how we want to do something active but back away because we just don’t have the energy. Little triumphs like I experienced a few days ago serve as a reminder, for me at least, that we can take positive steps to prolong our active lives while medical science searches for the ultimate answer to MSA.

Stem Cell therapy status: No dramatic improvement to report – but no marked deterioration either.

Will update in a couple of weeks

Post 18 - Sixteen weeks after treatment

2010-01-05T11:13:00.000-05:00

Happy New Year to everyone! Fran and I hope 2010 brings good health and good fortune to all. Christmas week was great fun here in SW Florida – my two daughters, granddaughter, son-in-law, and even a big old chocolate Labrador brought much joy to our home.

All the extra activity of the Holiday Season was a bit tiring for me. Thank goodness for a few well-placed afternoon naps to “re-charge” my batteries. In addition, I’ve been more physically active preparing for our move into a condo complex. Packing, some spackling and painting, and store trips to look at new furnishings also added to the fatigue factor.

Right now my biggest complaint involves balance related issues. I’m really shaky when I walk and not able to safely do many simple things – like climbing a stepladder or even carrying a full cup of coffee. I start another term teaching two Elderhostel courses next week and what with my unsteady gait and difficulty pronouncing certain multi-syllable words, I hope I don’t give the class the impression I’ve been drinking at ten o’clock in the morning. I better explain things right at the beginning. I’m also concerned that my voice won’t hold out through two back-to-back, 2- hour classes.

Finally, I still can’t tell if the stem cell procedure has had any effect – good or bad. It’s been almost four months since my trip to XCell and I guess I had high hopes for some positive sign by now. Maybe the New Year will bring a pleasant surprise. Otherwise, I feel pretty good – which makes it very frustrating when I have the enthusiasm to do something but find I just can’t do it.

Again – Happy 2010 (or 2K10, or twenty ten, or whatever you want to call it). I’ll be back in a couple of weeks.

Post 17 - Twelve weeks after treatment

2009-12-15T11:55:00.002-05:00

I’m a few days late with my regular two-week stem cell treatment update but things have been a little hectic around here. First, Fran & I have gone to contract on a condo unit not too far from our current home (one of my previous messages mentioned how it was becoming more and more difficult to maintain a house & property). Second, we’ve just finished a 3-day garage/moving sale which got rid of a lot of stuff that didn’t need to make the trip to the condo (rakes, shovels, tools, and much more).

Preparing for and carrying out the yard sale involved much more than the usual physical activity on my part. First came bringing everything out to the garage, then displaying and pricing each item. Next came 3 days of talking with “customers” and making sure everything went well. Finally came the cleaning of the garage and trip to the recycle center with the sad, unsold remains.

So, understandably I’m a little more “wobbly” than usual and my legs are still somewhat fatigued from all the activity, but overall I came through it better than I thought I would. Can I definitely say the stem cell treatment – now almost 3 months in the past – played any part in my ability to get through these events or would it have been the same without the treatment? I guess we’ll never really know for sure. That’s a mystery that remains to be solved. But, all things considered, I feel pretty good.

Since I don’t plan another update until early January – Fran and I would like to wish everyone (over 3000) who have visited this blog our sincerest best wishes for a joyous Holiday Season. May the New Year be one of peace, happiness, and good health. And to those of you joining me on this journey – let’s hope 2010 is a year of positive breakthroughs against this ridiculous disease.

Post 16 - Interesting newspaper article

2009-12-03T06:11:00.002-05:00

I just came across a newspaper article that might be of interest to people contemplating XCell stem cell treatment. It describes the experience of a Nova Scotia MSA patient who underwent the procedure. The article is dated 10/13/09 so the information is very current. The link to the article is: http://www.southshorenow.ca/archives/2009/101309/news/index016.php

Post 15 - Ten weeks after stem cell treatment

2009-11-26T09:03:00.001-05:00

It seems like only a few days ago, but it’s actually been ten weeks since my trip to Cologne, Germany and stem cell treatment at the XCell Center.

Until now, I’ve reported no noticeable change in my overall MSA status. I think I’ve basically said that I have felt no different than I did before receiving the treatment.

That statement was accurate until just a few days ago - when I experienced a feeling of subtle improvement. Sure, I still walk unsteadily, slur some multi-syllable words, and have a “thick” throat after talking loudly (I teach an Elderhostel program and my voice and throat are affected after an hour or so) – but recently these and other MSA symptoms just don’t seem as pronounced. Like I said, it’s a subtle change but one I hope is just the start of a lasting improvement.

So, I’m cautiously optimistic about my current status – cautious because it’s too soon to know if it’s real, but optimistic that it may be the start an upward trend.

Finally, I’ve added a link to the blog of Mariko S. who is considering a trip to XCell. She joins Eddie, Skeet, and a growing list of others who have or may soon begin a stem cell segment on their MSA Journey.

Post 14 – Eight weeks after XCell treatment

2009-11-13T19:22:00.002-05:00

Eight weeks have passed since my stem cell therapy at the XCell Center. Frankly, there’s been no noticeable improvement in my overall condition. Still walking like a drunk, sleeping too few hours, having difficulty pronouncing multi-syllable words, and occasionally feeling like my throat is full of cotton causing my voice to break up. Tried to do some lawn & shrub clean-up last week (it’s finally cooled off some here in SW Florida) but my legs told me to pack it in after little more than an hour. That convinced me it’s time to look into condo living

I’ve decided against the Inter-Stim procedure mentioned in the last post. I found it’s used most often on people who have more advanced urological problems than I. For now, I’ll stay with the Sanctura medication and hope for the best.

On the bright side, there’s been no worsening of my condition. Aside from asking Fran to do most of the driving – I can’t complain.

Finally, I was happy to hear XCell patient Skeet produced 6 million stem cells for his treatment. That has to be some kind of record!

See you in two weeks with the next report.

Added Nov 16: Forgot to mention that I've added links to the blogs of two others who recently underwent XCell stem cell treatment. Those links can be found on the left column of this page under "XCell related blogs"

Post 13 - 6 weeks after treatment at XCell

2009-10-31T09:35:00.003-04:00

About six weeks have gone by since I returned from Germany and stem cell implantation. If there has been any improvement in my condition, I would describe it as ‘modest,’ at best. Fran and my daughters and a few friends have made comments such as, “You seem to be walking straighter,” “You look steadier,” “Your voice sounds stronger,” and “You look better than before.” The last comment may be because I’ve gained several pounds and even I have to admit I look less gaunt. Overall, I feel pretty well. I’m keeping up the exercises and waiting anxiously for SW Florida to cool off (still near 90 each day).

My main complaint right now involves disturbed sleep due to frequently waking up to use the bathroom. I’m averaging between 5 to 6 hours sleep each night with about 3 interruptions. As a result I usually need to nap in the afternoon and can't help dozing off and on starting around 9:30 each night. I told my urologist I was unhappy with the Sanctura he prescribed (the latest in a long line of similar medications). His suggestion was for me to consider a procedure known as InterStim which implants small battery powered electrodes (similar to a pacemaker) in the sacral nerves of the lower back which control bladder function. What I’ve researched so far makes InterStim look like a promising alternative to medications with only limited effectiveness.

Finally, I’m happy Pat and Eddie’s trip to the XCell Center went well. And good luck to Skeet as well as Tulio, who both will be heading to XCell in early November.

I’ll be back in about two weeks with the next progress report.

Post 12 - Four weeks after XCell treatment

2009-10-14T16:12:00.005-04:00

Its four weeks now since I underwent stem cell treatment at the XCell Center in Cologne, Germany.

Fortunately, the fatigue and body aches mentioned in my last entry have subsided. Some of the other MSA-related symptoms that seemed to get worse right after the treatment have improved as well – namely balance, dizziness and sleep disturbance. All in all, I’m pretty much the same as just before the trip to Germany.

As noted by the doctors at the XCell Center, it may take up to six months before meaningful improvement is observed. To help things along, I’ve resumed my modest exercise regimen of stretches, weights, and stationary bicycle. I wish the weather here in SW Florida would finally cool down (its still 90 and humid during the day) so it’s safe to walk my overweight little dog, Chico.

I’ll post again in two weeks and will keep doing so every two weeks until all these MSA-related symptoms are just a bad memory. In the meantime – good luck to MSA’ers like Eddie (& Pat) who will soon take the trip to Germany in the search for a healthy, MSA-free life.

Post 11 - Two weeks after XCell treatment

2009-10-01T08:38:00.004-04:00

Today marks two weeks since receiving my stem cell implant at the XCell Center. At the beginning of this blog I promised to keep my comments factual and honest. Well, I must honestly report there has been no noticeable improvement in my MSA condition; in fact, a few of my symptoms seem worse than before. I think I’m still paying the price for being overly active during the trip to Germany. I walked too much and dragged around a suitcase and carry-on computer bag. Combine that with flight delays and hanging around airports and I’m not surprised by the subsequent headaches, neck and shoulder pain, and sciatica-like pain from my buttocks down both legs to my calves. I’m assuming this is all trip-related since it’s slowly lessening thanks to ibuprofen and hot showers.

What concerns me more are the worsened balance and gait problems, erratic sleep habits, constant fatigue, and pronounced dizziness when standing or walking. While I was prepared to experience some “down side” with the entire process, this is more than I anticipated. I suppose there is nothing else now then to just “tough it out” and hope to experience gradual improvement.

I do suggest to those considering stem cell therapy in Germany or elsewhere; remember you are there for a significant medical procedure and not to wear yourself out as a tourist – like me.

I’ll be back in two weeks – hopefully with a more optimistic report

Post 10 - Summing Up the XCell Experience

2009-09-23T10:46:00.001-04:00

I am writing this summary just a few days after returning from Cologne, Germany and less than a week after undergoing the XCell stem cell therapy procedure. I mention that because right now my overall physical condition is influenced by jet lag and travel stress. A week living in a hotel, eating different foods, walking much more than usual, airport delays, and dragging luggage and a fairly heavy carry-on would have worn me out on my best days. Now combine all of that with my current MSA condition and I’m not feeling particularly well at the moment. Ibuprofen is keeping the headache, stiff neck/shoulders, and back ache at bay. I’m still somewhat fatigued that’s evident in my balance and walking which is a bit worse than before. Today (Wednesday) is a little better than yesterday so I anticipate another week or more of “recovery” will be needed before I can judge if the therapy has had any immediate effect. I’m also prepared for the “long haul” of several months to learn if there’s been a positive difference. Right now, I plan to briefly describe my MSA condition on this blog every 2 weeks.

I can say without hesitation I have absolutely no regrets from undergoing the treatment at XCell. The staff and facility were exceptional. Cologne is a beautiful city with many attractions, super-friendly residents, and excellent restaurants. What I wrote in the introduction to this blog remains true today, “If I do nothing, the result will be nothing.”

Two other mentions: First, if anyone has specific questions about my XCell experience please contact me at the following e-mail address ssteidel@embarqmail.com and I’ll be happy to reply. And second, please allow me to wish Fran - my wife, executive assistant, travel coordinator, medical consultant, and chief caregiver, a very Happy Birthday today. There was no way I could have undertaken this procedure without her planning and constant support.

Post 09 - In Cologne

2009-09-15T04:48:00.030-04:00

Day 8 (Monday) – Back on the Road (Sort Of) After a comfortable night at the Sheraton (breakfast buffet – and last night’s dinner were excellent) we dragged our bags back to the Delta counter and checked in. Our 9 hour flight to the States was scheduled to depart at 10:30am (arrive in Atlanta at 2:15pm with connecting flight to Florida scheduled for 4:15pm). Happily at 10:30 we were “wheels up” and on our way home. It looked like Murphy was done fooling with us. After a long, 3 movie flight we landed in Atlanta in what appeared to be a rainstorm. Apparently Murphy made the crossing faster than us and ordered up a serious storm with heavy rain, strong winds, and major flooding. As we headed down to the concourse for our flight to Florida, Murphy‘s storm caused the entire Atlanta airport – the busiest in the world - to cease operations. As the delay stretched out to over an hour, more and more flights were cancelled. We started to check out the most remote seating areas for what may become our overnight “lodging.” Among all the cancelled flights, our little Florida flight continued to show “Delay”- with a slated departure of 6:15pm. Could we be that fortunate amid a sea of misfortune? I have never been more relieved to see an entire flight crew appear at the gate and head down to the plane. Good to their word Delta had us in the bumpy air 7pm and in Fort Myers at about 9pm. Murphy even showed some pity on us by allowing our rain dampened luggage to arrive on the same flight. Finally, we walked in our front door, decompressed for about an hour and went to sleep (more accurately – went unconscious). All in all a very stressful two days – thank goodness for Ibuprofen Extra Strength).

Random Observation #4 - The German railway system is clean, convenient, and safe. Our ride to and from Dusseldorf was very smooth and scenic. It was especially safe on our trip back to the airport where we noticed a stepped up police presence. Apparently it was due to an increased threat from terrorists.

Day Seven (Sunday) – Murphy’s Law German Style I should have known things were proceeding too smoothly. I don’t know what they call it in Germany, but in the States it’s referred to simply as “Murphy’s Law” which basically means if anything can go wrong – it will go wrong (and usually at the worst possible time). Murphy’s Law struck us on Sunday. All started off well. We checked out of the Hotel Lindner at 4:15am and walked the few blocks to the Cologne railway station where we boarded the 5:51am train to the Dusseldorf airport stop. Everything still ok. We took the Sky Train to the main terminal and checked in at the Delta counter. Next we cleared security (interestingly, they don’t make you take your shoes off but force of habit made me remove them anyway) and passport control. Still no problem – in fact, we commented that in a little while (9:20 am) we’d be on the way home. I believe that’s the comment that must have awakened Mr. Murphy. While waiting at Gate 44 for the announcement to board I noticed activity that just didn’t seem normal. At 9am, Murphy struck. They announced there would be a delay while a slight mechanical problem was attended to. Then the captain took the mike and informed us the problem was electrical. He seemed optimistic about the delay being only a short one. That comment apparently only made Murphy madder. At 11am we all received 10 euro meal vouchers and instructed to not go too far away from the gate. Back at the gate around 2pm, Murphy finished us off. The announcement stated the flight was cancelled for mechanical reasons and we’d have to wait until the next morning for departure. We were given vouchers to the Airport Sheraton which included one night’s lodging, 60 euros toward dinner and other expenses, and a complimentary breakfast. If you must be stranded somewhere, there are worse places than the Sheraton (Murphy missed that one).

Random Observation #3 – An unexpected, sobering experience was our tour of the EL-DE Haus Museum on Saturday morning. The museum housed the Gestapo secret police during the WWII. The tour included the basement cells where political prisoners were housed, interrogated, tortured and, in some cases, murdered. The museum also candidly portrayed the rise and fall of National Socialism and the near total destruction of Cologne

Day Six (Saturday) – Venturing Out Today was sort of an experiment – walking a bit to test my balance and stamina. We started with a half-mile walk to a museum and about two hours viewing the exhibits. Afterward, a similar walk back toward the hotel and a stop for our last German meal and two final Kolsch beers. I’ll admit being a little tired when we reached the hotel. Over did it just a bit - but had to try.

Day Five (Friday) - Taking It Easy Even though I felt pretty well and wanted to go out for awhile, I obeyed the doctor's orders and spent most of the day relaxing in the hotel. Since the order didn't apply to Fran, she took a taxi to one of her "must see" attractions - the Chocolate Museum. She also walked around the Old Town district that abuts the Rhine. When she returned, I had to get outside - it was an absolutely beautiful day - so we walked to a nearby sidewalk restaurant for another hearty German meal and glass of Kolsch. We topped the day off with a cup of Starbucks and some people-watching near the Cathedral.
Physically, a day after the implantation, my only complaint is a stiff lower back. Don't know whether that's due mainly to the procedure or the firm hotel mattress. One other effect I've noticed is the decrease in urinary urgency/frequency - even after drinking plenty of water. It would be great if that continued.

Day Four (Thursday) – Stem Cell Implantation This is different. I’m lying in bed and dictating this message to Fran, my lovely executive assistant. The doctor was very insistent on my lying flat for the rest of the day to avoid a headache and other complications.
My stem cell implantation at the XCell Center took all of twenty minutes. I sat on one side of the exam table; the doctor sat behind me, pulled up my shirt, and had me lean forward on a pillow with my head down. After applying a local anesthesia, he started the lumbar puncture by inserting a needle into the spinal canal just above my waist and withdrew 3.5 ml of fluid. He replaced this fluid by injecting 3.5 ml of the prepared stem cells. Aside from the slight pinprick from the local I felt no pain or other sensation. I half expected to feel these little stem cell wonders rushing off to do their job. Maybe that will come later.
Today’s biggest concern involved the number of available stem cells. The average patient’s bone marrow sample produces approximately 2 million usable stem cells. Mine totaled just 700,000. While that total is admittedly low, the doctor noted that the “vitality” of my stem cells was 10% higher than normal, which should raise their overall effectiveness. He also added that they really don’t know what the optimal number is, so 700,000 may be more than enough.
Right now, eight hours after the procedure, I have some minor discomfort in my back from both Tuesday’s bone marrow extraction and today’s events. I will be very happy if it does not get any worse. That’s it for now; Fran refuses to work overtime. One last thing – We continue to meet interesting people on this journey. As we were preparing to leave the Center, a gentleman from Iowa was finishing up his second procedure at XCell for Parkinson’s. He was so pleased with the results of the first treatment last year that he decided to undergo a second round. It’s very heartening to hear these positive experiences. Good luck, Ted!

Random Observation #2 - Finding a cup of decaf coffee in Cologne is like trying to find snow in Florida. Every shop we stopped and asked in brought the same confused look. The local coffee is good and strong but not something I want to drink in the evening and then try to fall asleep.

Day Three (Wednesday) – Sightseeing Bus tour of Cologne and a little bit of walking around this beautiful city – didn’t want to wear myself out. Another hearty German meal and a glass of Kolsch.

Day Two (Tuesday) – 1st Visit to XCell Today can certainly be described as “interesting.” After a short taxi ride to the east side of the Rhine, Fran & I arrived at the XCell Center, which is on the second floor of the Eduardus Hospital complex. The Center is spotless and staffed by very professional and friendly personnel. After completing the usual registration paperwork, I had a few vials of blood drawn to compare with the report I sent from the States a few weeks ago – the one that drew the Clinic doctor’s hesitant comments. I wish I knew the results to see if all the red meat and iron supplements have made a difference.
Next came an informational session with Dr. Johns who will perform both stages of my treatment. He thoroughly described all aspects of the procedure and asked many pertinent questions. I was especially happy to hear his opinion that stem cell therapy appears more effective during the early stages of a disease like MSA rather than waiting until it has reached a more advanced level. I’m very pleased and confident with Dr. Johns as my treating physician.
After the conference it was time for Dr. Johns to perform the bone marrow withdrawal. With the exception of a slight pinch from the anesthetic needle, the procedure was painless. The withdrawal of 20 vials of marrow took about 15 minutes. These vials are now on their way to a lab in London for stem cell processing and return to XCell in time for Thursday’s implantation.
The entire process today took about two hours after which we treated ourselves to a typical German meal and my first Kolsch beer. After a day off tomorrow, it’s back to XCell on Thursday for the implantation. I’ll post another entry when that’s over. That’s one step down and one to go.

Random Observation #1 - The people of Cologne really are incredibly friendly and helpful. All you have to is stop on the sidewalk and open up a map and you’re immediately surrounded by a bunch of “Kolners” who want to help you find your way.

Day One (Sunday - Monday) - Travel to Cologne It’s about midnight Monday night here in Germany and I’m wide awake in our Cologne hotel room with a major case of jet lag. So instead of staring at the ceiling, I thought I’d take a few minutes to cover how the trip to the XCell Center has gone so far.
The travel on Delta was smooth, uneventful, and long – a total of about 10 hours in the air, with little sleep. Dusseldorf airport is relatively small and very manageable – we were through passport control very quickly. Clear signage (in German & English) led us to the Sky Train, which took us to the nearby railway station. I don’t know if Fran and I looked particularly needy or we landed in Germany on “Be Nice to Bewildered Americans Day” but we kept encountering locals who wanted to make sure we found our way. They helped us buy our train tickets (38 euros for 2 round trips), took us to the right track, and even gave us a hand with our luggage. When we got off at the Cologne station, one incredibly helpful lady insisted on walking us the few blocks to our hotel. Turns out her West Berlin parents were fed by the American airlift after the war.
After checking into the Hotel Lindner (a very nice place near to the town center) we crashed for a few hours, then took a short walk back (in the rain) to the railway station’s underground shopping area where we were forced to have some great pastries and much needed coffee. Brought two sandwiches back to the hotel for a light dinner, watched a little TV, and couldn’t keep our eyes open much past 7pm which for me turned out to be a long nap because here I am awake at midnight.
Seriously, I think one of the reasons people were so willing to help today was because the travel tired me more than expected and I was having a rough time walking and managing the luggage. Even though we only had one modest-sized suitcase each, I was finding walking progressively more difficult.
Well, tomorrow is bone marrow extraction day at XCell so I should try to get some sleep. I’ll pick up the blog when we get back to the hotel. Stay tuned.

Post #8 - At Last!

2009-09-11T13:34:00.004-04:00

Finally – the date that seemed so far away is just about here. The suitcases are packed (had to dig out long sleeve shirts and regular trousers which don’t get much use here in SW Florida where the daily temp still reaches 90). The travel documents have been double checked and the flight and hotel reservations have been confirmed. Earlier this week we went to the local bank to pick up the Euros to pay the Clinic. My hand is still sore from signing my name so many times and filling in the name of the XCell Center on over 40 travelers cheques. On the date we purchased the cheques, one euro cost $1.46 USD.

We leave Fort Myers for Atlanta at about noon on Sunday. The flight to Germany leaves Atlanta at 4:25pm and arrives in Dusseldorf at 7:30am on Monday morning – 9 hours in the air! I’ll be wearing compression knee-high socks to help my blood pressure stay steady and plan to drink plenty of water along with walking around or at least standing up when possible. After a brief train ride we should arrive in Cologne no later than 10am. The Lindner Hotel, which is just a few blocks from the railway station, has graciously offered us an early check-in at no cost. After such a long and probably tiring trip, it’s a big relief to learn we can get into our room early.

The bone marrow extraction is scheduled for noon on Tuesday. If all goes well, we plan to do some sightseeing on Tuesday afternoon and all day Wednesday while XCell isolates the stem cells from the marrow. With all the red meat and iron-rich foods and supplements Fran has been feeding me over these past few weeks, I’m certain my stem cells are charged up and raring to go. It’s then back to XCell on Thursday at 11am for the stem cell implantation via lumbar puncture. After a day or so of rest in the hotel we hope to do some more sightseeing on Saturday before heading home on Sunday morning

As the trip to Cologne and XCell draws nearer, the apprehension grows as well. Is the outcome going to be worth the expense? What is the actual procedure and recovery going to be like? Are my expectations too high? How long do I wait for some sign of progress? For those of you who decide to undergo a stem cell implantation procedure in the future – either at XCell or some other clinic around the world - be prepared for an emotional roller coaster ride. I suppose it’s just human nature.

Finally, I’m taking a laptop along on the trip and hope to offer some random thoughts to those of you who have viewed this blog over 1200 times. Thanks again for all your support.

Post #7 - Some Thoughts from Fran

2009-08-27T16:01:00.007-04:00

Hi, I’m Steve’s wife, Fran. I thought it was time to put my two-cents worth into this blog.

First let me say how proud I am of my husband for tackling his MSA head on. He has not wavered for one moment from the decision that he would give it his all. He has been so cooperative in doing what will be helpful.

You may have read that his red blood count is low so I have taken the challenge to raise those numbers by the time we get to the XCell Center in Germany.

Some things we have learned and are doing:
• There are two types of iron: the type that comes from animals and the other that comes from vegetables, fruits and beans. The interesting thing is that they should be eaten together to get the most iron absorption, for instance, chili with beans.
• There are supplements and there are supplements. Ferrous Sulfate is the most popular, least expensive but only about 35% gets absorbed. It can also cause constipation.
• In researching, I came across a product called Bifera Iron Supplement. We found it in Walgreens and Target. It is made from both types of iron; therefore more is absorbed and less side effects.
Let me say now that I do not endorse this product or suggest you take it or follow what we are doing without talking to your doctor.
• I printed out a list of iron rich foods and tacked it inside our kitchen cabinet.
• Some POOR sources of iron are dairy (milk and cheeses). They actually hinder the absorption of iron.
• We eat a healthy diet. Steve has yogurt and a banana every day for lunch. We rarely eat red meat. We eat the things that are heart healthy but now we find out not necessarily iron building. So therefore we (especially Steve) will be eating a little differently for the next few weeks.

Some of the foods I am making for him:
• Seafood especially shell fish
• Red meats, liver
• Eggs, especially yolks
• Nuts and beans
• Vegetables like spinach, broccoli, asparagus, and greens
• Fruits like grapes, raisins, prunes
• Breads, grains, and cereals that are fortified with iron
• An interesting fact, mentioned before, is that if you eat Vitamin C fruits and veggies with iron rich foods, more iron will be absorbed.
• Some Vitamin C foods are citrus fruits, tomatoes, raw cabbage, green peppers, cantaloupes and strawberries.

Well, I’m off to prepare lunch.

Thanks to all for your concern and prayers.
Fran

Steve’s note: Oh no, not another thick, juicy steak. Well, if I must. I just hope my newly supercharged red blood cells can make it through my clogged arteries!

Post #6 - There's Always Something

2009-08-21T11:56:00.013-04:00

I didn’t think I’d be posting to this blog until just before leaving for Germany on September 13 but a problem needed to be dealt with.

Yesterday I received a phone call from my XCell Center contact who wanted to discuss the findings of my recent blood test. The blood test, conducted locally on August 10, was required by XCell as part of the preparations for my upcoming stem cell therapy. The test results were faxed to the clinic in Germany for review by a physician to determine if my blood was “healthy” enough to provide an adequate volume of stem cells. The physician’s evaluation was then sent back to my contact.

In the words of the reviewing physician, “In face of blood test values that are in the lower range of justifiable conditions, I am approving this patient now, but there is still some probability of lower crop of stem cells harvesting. This should be told to the patient.”

It seems my test values - especially the white and red cell counts – fall below the “reference (normal) range.” Apparently those low blood counts imply there is a “chance” not enough stem cells can be harvested for an adequate transplant. While he didn’t actually say so, I got the feeling I was being offered an opportunity to either postpone or cancel the treatment, or at the very least, was being prepared for less than superior results should the procedure take place as scheduled.

I immediately contacted my GP for his interpretation of the test results. He was kind enough to call a hematologist colleague who advised that while the cell count numbers were on the low side, my hemoglobin numbers were close to normal, which may help in the availability of sufficient stem cells. I was also told there is no quick way to increase blood counts. So – a decision had to be made: a)cancel, b)postpone, or c)proceed as planned.

After several hours of weighing the pros and cons of the situation – I have decided to go forward with the September procedure. In the meantime I will work with my GP to raise my values should the need arise for a subsequent procedure. I feel this decision is based on logic and common sense - not on emotion or exaggerated hopes. Nevertheless, it is still one made with no small degree of anxiety.

Added 8/24/09 Another reason to go forward with the procedure occurred to me after this message was originally posted on 8/21. The blood for my test was drawn on August 10 - minutes before I got my monthly B-12 injection. It stands to reason that my blood count probably went up into the "normal" range- but only after the blood was drawn for the test. If I had gotten the injection on August 9 - the test results would have undoubtly been higher. So - I plan to get my next B-12 shot a few days before heading off to Germany with the hope that my levels will climb into the acceptable range - thereby enhancing the outcome of the procedure.

Also added 8/24/09 To insure a good outcome, Fran has begun a one-woman crusade to boost my levels by preparing and serving me iron-rich foods. She started last night with a big helping of liver smothered with onions and bacon. I can feel my levels going up already!

More to come soon. Thanks for your continued support,

Steve S.
SW Florida

Post #5 – Applying for Treatment at XCell – And Other Details

2009-08-14T09:26:00.007-04:00

Once the decision was made to pursue stem cell therapy at the XCell Center in Cologne, Germany, I followed the application process outlined on the XCell website www.xcell-center.com
1. In early April of 2009 I submitted XCell’s online Inquiry Form to determine if my condition is one the diseases the clinic treats. MSA is not specifically listed as an included disease on their web site but does receive clinic recognition.
2. After receiving preliminary approval, I completed a more detailed online Medical Information Form
3. In mid-April I received a phone call from XCell’s North American representative requesting faxed copies of medical reports and MRI summaries for review by XCell’s medical panel. The representative was very helpful and able to answer all my questions. He has continued to be my principal contact at XCell.
4. A week later I received an e-mail from XCell informing I had been approved for stem cell treatment
5. I sent an e-mail confirming my intention to undergo the procedure
6. Finally, I received a September appointment for bone marrow extraction and lumbar puncture implantation. I chose September for my convenience; I’m sure I could have scheduled an earlier date.
Note: Steps 1-6 were completed in less than 30 days

Projected Expenses:•
$10,500 (7545 Euros) for XCell Center treatment costs. Exact dollar amount will fluctuate slightly based on the daily exchange rate. No money was requested upfront – payment in full (in Euros) is expected on first treatment day.
• Fran & I are using the last of my Delta frequent flier miles accumulated during several years of business travel. The average roundtrip airfare per person between the US and Germany from most East Coast cities is approximately $800. There are less expensive flights available but they seem to involve more stopovers. Flight time from Atlanta to Germany is about 9 hours. We found flying into Dusseldorf (30 minutes to Cologne by train) rather than directly into Cologne offered more convenient flights with fewer stopovers. Flying into Frankfurt and taking a high-speed train to Cologne is another, lower cost alternative. I certainly recommend “shopping around” for the best travel plans.
• $1300 - Cologne hotel accommodations (6 nights – double occupancy). We chose the Hotel Lindner, a modest-cost hotel within walking distance of Cologne’s railway station and tourist district. We also chose to stay six nights rather than five – the minimum suggested by XCell - just to be on the safe side should there be any medical complications.
• $100 - daily per person for meals. We understand meal costs are high in Cologne
• $60 – two roundtrip train fares between Dusseldorf and Cologne
• $50 – two roundtrip taxi fares between hotel and clinic
• $50 – daily per person sightseeing costs
• $50 – daily per person miscellaneous expenses
• $125 – per person Passport w/ photo fee

Total Related Expense
$13,200 Estimated for Steve
$ 1,355 Estimated for Fran
$14,555 Estimated Total
(Remember – this total does not include airfare)

A Few Other Random Observations

• If you intend to use your cell phone in Germany, be sure it has the technology to make and receive calls to/from Europe. Also, rather than paying a hefty per-call charge, check if your carrier offers a special international calling feature which makes each call much more economical. These plans can often be activated for short terms, such as monthly.

• The XCell Center accepts three forms of payment: cash (in Euros), travelers checks (in Euros), and major credit cards. After discovering XCell placed a 196 Euro surcharge on credit card use, I chose the travelers check option. My local bank needs just a day or two to amass the amount of checks I need. The largest travelers check available in Euros is 200 – which means I’ll have to prepare over 50 individual checks

• And finally, remember Germany operates on a different power system requiring converters and adapters if you bring along any electronics – like computers or cell phone chargers

This will probably be my last formal entry until just before the trip to Germany commences on September 13th I’ve tried to discuss everything involved in the decision process of seeking stem cell therapy to combat MSA. If there is anything you would like to add to this discussion or questions you’d like to ask – please don’t hesitate. Thanks again for all your support and hopefully I’ll soon be able to report substantial progress in MY MSA JOURNEY.

Post #4 - Why the XCell Center?

2009-08-10T17:42:00.002-04:00

Like many other Multiple System Atrophy (MSA) sufferers, the prognosis of no treatment or cure for MSA was difficult for me to accept. How was it possible for the advanced medical system in this country to have so few answers for this terrible disease? The assurance from my doctors that they will actively treat my symptoms yet-to-come was not very reassuring. Surely something is available to combat the steady progression of MSA to its predicted conclusion.

With that objective in mind, my attention was drawn to a recent entry on the Yahoo MSA Support Group site shydrager@yahoogroups.com . The entry was posted by group member Sheila who took her 67-year-old mother to Germany for stem cell treatment and felt the procedure offered positive results (Sheila’s original entry and subsequent follow-ups can be viewed in the archives of the MSA Support Group). Sheila deserves many thanks for sharing her and her mom’s XCell experience with other group members.

While I was aware of the general concept of stem cell therapy, this was the first time I learned clinics existed which offered treatment specifically for MSA patients. As a skeptical former police officer, I wondered if these clinics were run by medical scam artists preying on vulnerable people desperate for a meaningful treatment.

I carefully scrutinized every page of XCell’s website www.xcellcenter.com and was impressed with the straight-forward nature of its content. Unlike a few other stem cell clinic sites, there were no claims that “miracle” cures were practically guaranteed. In fact, XCell made it clear that while hopeful of a positive outcome, due to the complex nature of stem cell therapy, “there is no guarantee for success.” The only thing the website’s many informative pages didn’t mention was specific treatment for MSA. Subsequently I learned that relatively few MSA patients have undergone the procedure at XCell– so a meaningful number of case histories (and the results) have not been compiled. Their experience with Parkinson patients is much greater, with two-thirds showing either “some” or “significant” improvement.

Before deciding which, if any, facility I would select, I investigated other clinics in China, Mexico, Panama, Ukraine, and the Dominican Republic. For those of you who are wondering why there are no clinics listed from the United States – the FDA considers these type of procedures (even using your own stem cells) to be a process requiring their study and approval – an approval apparently still years away.

After weighing all the different stem cell implantation procedures, techniques, clinic locations, costs etc., I decided on the XCell Center for four primary reasons: the German reputation for quality and precision, the ease of travel to Europe, the relatively manageable cost of the procedure, and perhaps most importantly, the use of my own stem cells rather than neural, umbilical or other sources not my own.

Finally, if I had this decision process to do over again, I’d seek the input of my GP first rather than last. In fact we didn’t discuss it until I needed him to write an order for preliminary XCell blood work. I trust him completely with Fran and my health care – why hesitate to ask him about stem cell therapy? Looking back, I think subconsciously I didn’t want to hear him say the treatment was worthless and to save my money (and dampen my hopes). As it turns out he’s fully supportive, medically curious, and optimistically awaiting the results.

So – it’s off to Cologne, Germany on September 13th with high hopes and anticipation. I’m also looking forward to trying Sheila’s secret weapon – the local Kolsch beer. Reputedly it has healing powers.

In a few days my next entry (#5) will be a “nuts and bolts” description of the XCell application and registration process, procedure costs, travel plans, and all the many details involved in an endeavor like this.

Post #3 - My Current Condition

2009-08-08T08:30:00.013-04:00

Currently, I would speculate I am in the early to mid-stages of Multiple System Atrophy (MSA). On a scale of 1-10 with 10 being the worst, I’d rate my current condition as a 4. I’m hopeful this “early stage” situation works in my favor with the upcoming stem cell therapy at the X-Cell Center. Instead of receiving the therapy as a “last resort” toward the final stages of the disease, perhaps treatment at an earlier stage will increase chances of a successful outcome.

As of August 2009, I’d describe my MSA related symptoms as:
• Gait disturbance – I rely on a cane when walking and find it more practical to use a wheelchair or scooter when visiting theme parks or museums (Thanks to Fran and my daughters for pushing me around).
• Balance related issues even when standing still – I sway from side-to-side and usually head for a wall or piece of furniture for support
• Occasional misplacement of left foot when walking – scrapes on floor
• Pronounced muscle weakness in legs after even moderate exertion
• “Coat Hanger” discomfort in neck/shoulders
• Urinary frequency/urgency (neurogenic bladder)
• Change in bowel function – I’m afraid incontinence is looming
• Decreased libido (ED) – one of the first symptoms several years ago
• Some loss of manual dexterity – I’m increasingly clumsy
• Sleep disturbance – occasionally act out while asleep
• Constant feeling of thickness in throat - voice cracks while speaking
• Blood pressure commonly on low side (100/70 avg) - occasional lightheadedness upon standing and up to 30 point drop in BP (orthostatic hypotension). Fortunately, it hasn’t caused a serious fall or faint yet. I frequently wear knee-high “pressure stockings” which seems to help
• Somewhat diminished mental acuity – increasingly forgetful
• Easily fatigued – most days need a short afternoon nap
• Minimal anxiety issues

A few other issues (MSA-related?):
• Constant whistle in ears – diagnosed about 8 years ago as Tinnitus
• Occasional vision problem in one/both eyes. Usually brought on by bright light or sun glare. Has been diagnosed as “silent migraine.” Consists of a V- shaped floater that affects vision and depth perception. Lasts about 30 mins.
• Osteoporosis – bone density test revealed below average numbers

Added 8/11/09 - When I was younger and needed to see a doctor for backaches, it turned out I have mild scoliosis (curvature of the spine). I mention this here because I have learned that several other MSA patients list having varying degrees of scoliosis. Could there be a connection between MSA & spine curvature? I wonder if a study has been conducted?

At this time, the three most troublesome symptoms I’d like to see successfully treated by the stem cell procedure are disturbed balance/gait, urinary issues, and orthostatic hypotension.

Current Medications:
• Monthly B-12 injections
• Folic Acid (to aid B-12 absorption)
• Sanctura (urinary issues)
• Actonel (to combat osteoporosis)
• Citalopram (anxiety control)
• Assorted OTC vitamins – multi-vitamin, fish oil, B complex vitamin

In a few days, the next blog entry (#4) days will describe why I choose the XCell Center for stem cell treatment.

Post #2 - Getting the News

2009-08-06T09:35:00.018-04:00

What eventually was diagnosed as Multiple System Atrophy (MSA) first became noticeable as an impaired gait in mid 2005, when I was age 61. At that time I was traveling frequently, making daylong presentations involving much standing. After flying home to SW Florida – often late at night – I began experiencing an unusual “weaving” gait when walking up the gangway and into the terminal. Initially, I wrote off the experience to travel/work fatigue, especially since the condition subsided after a day or two.

Throughout the remainder of 2005 and into 2006, the condition occurred more frequently, taking place at home as well as on the road. I found myself occasionally bumping into objects as well as people. I also experienced a balance-related fall from a pier into the water that dislocated my collarbone and injured some shoulder nerves and muscles.

In April of 2006, I retired completely. The condition, however, did not abate but instead has continued to progress to the current level, which will be detailed in my next post.

In mid-2006, it was determined my B-12 level was low and I began monthly vitamin injections. There was an opinion that this deficiency might be causing the erratic gait. By late 2007 when the condition continued to worsen, and other symptoms arose, I sought the opinion of a neurologist who ordered several MRIs. When the MRIs proved negative, he added high strength folic acid in an effort to improve the B-12 absorption. About 6 months later when the condition and associated effects worsened, I returned to the neurologist who suggested a second opinion from a facility such as the Mayo Clinic or Johns Hopkins Medical Center.

I selected Johns Hopkins in Baltimore, Maryland – for no reason other than my daughter lives nearby - and traveled there in November of 2008 where I was examined by Dr. Paul Dash, then Director of Hopkins’ Ataxia Clinic. After a thorough neurological examination and a review of my MRIs, his diagnosis was pretty definite: Multiple System Atrophy-C (the C indicates “cerebellar dysfunction” meaning the autonomic nervous system is affected whereas MSA-P involves predominantly “Parkinsonism-like” symptoms such as tremor and rigidity).

The diagnosis was sent to my GP and neurologist here in SW Florida. Both admitted they had little, if any, experience with MSA. They were very sympathetic and medically curious but admitted there wasn’t much they could offer except to treat the various symptoms as they arose. It was decided I’d schedule regular visits with my GP who would involve other specialists as needed. I currently see my GP every 3 months and have no appointments scheduled with the neurologist. I have also been seen by a urologist who has treated my urgency/frequency issues with partial success.

Since my doctors couldn’t offer much insight into MSA, I did like most people and sought information online. Needless to say, the findings were pretty shocking. Learning that there is no cure and a limited lifespan can really ruin your day.

It was at this point I found the Multiple System Atrophy Support Group shy-drager@yahoogroups.com which provides a forum for MSA patients and caregivers. This support group’s postings, while admittedly depressing to read at times, offer invaluable information and advice from people who have significant experience with this insidious disease. It was through this exchange of information I learned of stem cell therapy and eventually chose the XCell Center in Germany.

My next post in a few days will detail my current medical condition which I hope the procedure at XCell in September will halt or better yet reverse.

Post #1 - Introduction

2009-08-04T12:00:00.002-04:00

Hello - My name is Steve S. and I am one of an estimated 75,000 Americans who have Multiple System Atrophy (MSA). Briefly, MSA is a neurological disease resulting from degeneration of certain nerve cells in the brain and spinal cord. Body functions controlled by these areas behave abnormally in people with the disease. These include the autonomic (involuntary) nervous system (which controls blood pressure, heart rate, and bladder function) and the motor system (control of balance and muscle movement). The cause of MSA is not known and, as of now, there is no cure and no significant treatment.

I don’t believe that last sentence is necessarily correct. There may be no significant treatment here in the United States but innovative medical efforts are underway elsewhere in the world that have shown promising results. In particular, I’m referring to the process where the patient’s own stem cells are extracted from his or her bone marrow, treated, and introduced into the spinal column with the intent to have them replace the defective MSA cells.

The purpose of this blog is to chronicle, step by step, my journey to undergo this innovative procedure at one of these stem cell treatment facilities - the XCell Center in Germany – and to report if it's successful in halting, or better yet, reversing this devastating condition. I hope my experience will be helpful to other MSA patients who are considering undergoing the XCell Center stem cell procedure.

In addition to my experiences with this treatment and its aftermath, I also intend to describe its effect on Fran, my wife of 44 years and my wonderful caregiver. We are taking this journey together.

In this blog I plan to include:

Information about me and the development and current status of my MSA condition

My experience to date with the XCell Center (contact, procedure, costs, travel, etc.)
General information about MSA - including a glossary of terms
Websites covering support groups, medical facilities knowledgeable in MSA issues, additional stem cell clinics, and other information of specific interest

There is another feature of this blog I hope will be successful, namely, an opportunity for the reader to contribute with either questions or comments. Yes, this is my blog but in reality it’s intended as a place for the exchange of MSA-related conversation. In particular, I’d like to hear from other MSA patients who have considered or actually undergone stem cell therapy either at XCell or another clinic.

To leave a remark or to view what others have said, simply click on the word “comment” at the end of each post.

One last comment: I have no financial or other interest in the XCell Center and plan to be objective and frank about my experience with them. If I’m unhappy or concerned about any aspect of my treatment – it will appear on this blog

Please include http://msajourney.blogspot.com/ in your Favorites and check back often for updates.

My next post, in a few days, will be a brief description of my MSA history.