Saturday, December 3, 2011

Post 44 - Belated Words of Thanks

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!

Thursday, November 10, 2011

Post 43 - XCell Resurfaces (sort of)

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 misunde standing 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?

ADDED 3/11/12: I just found the original e-mail, dated Nov 2011, from Dr. C. Kleinbloesem who claimed to be XCell's last CEO and falsely maligned Medical Director, who was wrongly forced out of office.

His "dedication" to the field of stem cell therapy has led him to form a new organization, Cells4health GmbH which has set up shop in Beirut, Lebanon, where their website: looks remarkably like XCell's - right down to the same prices.

I guess the "Business climate" is less restrictive in Lebanon.

Sunday, October 9, 2011

Post 42 - To Laugh or Not to Laugh

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.

Tuesday, September 6, 2011

Post 41 - A Temporary Sense of Accomplishment

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.

Monday, July 25, 2011

Post 40 - Status Check

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.

Tuesday, July 12, 2011

Post 39 - How & Why This Blog Has Changed

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.

Thursday, June 23, 2011

Post 38 - More on XCell's Closing

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’ 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 patients apparently have been asked to pay ‘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.

Sunday, May 29, 2011

Post 37 – XCell Center Suspends Stem Cell Therapy

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 - 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.

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.

Tuesday, April 26, 2011

Post 36 - Looking for Mister Grab Bar

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.

Friday, March 25, 2011

Post 35 - Odds and Ends

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.

Thursday, March 3, 2011

Post 34 - MSA Awareness Month

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, 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.

Saturday, January 29, 2011

Post 33 - Can We Please Cancel 2011?

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.