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.
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
Thursday, June 23, 2011
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 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.
“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.
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.
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.
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, 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.
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.
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.
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.
Wednesday, December 29, 2010
Post 32 - An Interesting Holiday Surprise
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.
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.
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