Monday, December 3, 2007
Role Model
Stem cells, experimental drugs and other curative treatments aside, here's the inspirational story of Charlie Wedemeyer and his fight against ALS.
Saturday, December 1, 2007
Life isn't measured by the number of breaths you take
One of the biggest obstacles in raising funds and awareness for Ataxia is the fact that the number of people afflicted with the disease is minuscule compared with say, cancer or diabetes. Similarly, drug makers would rather direct their attention to researching cures for cardiovascular diseases than orphan ailments like SCA3. I recently came across an article in the Wall Street Journal that talked about one man's attempt in turning the tide on funding and finding the cure for ALS.
Speaking about spreading awareness of rare diseases, on an episode of House on TV a few weeks ago, a doctor confessed that she might have inherited Huntington's Disease from her mother. She refused to be genetically tested because "not knowing her fate encourages her to live life fuller." Although I do not agree with this character's reasoning, I do applaud her for wanting to live her life to the fullest despite her potential handicap.
On the home front, Richard is keeping up with exercising, eating right and taking various medicines and nutritional supplements prescribed and recommended to him. Lately, he has found a local physical therapist who has experience working with patients who has neurological ailments. In fact, the PT's father has MS so he is intimately familiar with this class of disease. Richard described his weekly 40-minute PT sessions as "brutally intense". Perhaps PT in this case means "physical terrorist"!
Through the MJD discussion group came news of a new nutritional supplement regime that has shown promise in improving ataxia symptoms. A few members on the MJD discussion group, including Richard, have volunteered to be the guinea pigs who will then keep tabs of their experiences and results of the supplement and report back to the group. Richard's initial efforts were hampered by the fact that we ordered the wrong type of Vitamin B. This has been corrected and he will start taking the correct Vitamin B and PhosChol starting next week. Also, we learned that in order to get the optimal results, the supplements cannot be taken in conjunction with any anti-depressants or any drug that affects the CNS (Central Nervous System). Wish us luck!
Speaking about spreading awareness of rare diseases, on an episode of House on TV a few weeks ago, a doctor confessed that she might have inherited Huntington's Disease from her mother. She refused to be genetically tested because "not knowing her fate encourages her to live life fuller." Although I do not agree with this character's reasoning, I do applaud her for wanting to live her life to the fullest despite her potential handicap.
On the home front, Richard is keeping up with exercising, eating right and taking various medicines and nutritional supplements prescribed and recommended to him. Lately, he has found a local physical therapist who has experience working with patients who has neurological ailments. In fact, the PT's father has MS so he is intimately familiar with this class of disease. Richard described his weekly 40-minute PT sessions as "brutally intense". Perhaps PT in this case means "physical terrorist"!
Through the MJD discussion group came news of a new nutritional supplement regime that has shown promise in improving ataxia symptoms. A few members on the MJD discussion group, including Richard, have volunteered to be the guinea pigs who will then keep tabs of their experiences and results of the supplement and report back to the group. Richard's initial efforts were hampered by the fact that we ordered the wrong type of Vitamin B. This has been corrected and he will start taking the correct Vitamin B and PhosChol starting next week. Also, we learned that in order to get the optimal results, the supplements cannot be taken in conjunction with any anti-depressants or any drug that affects the CNS (Central Nervous System). Wish us luck!
Tuesday, November 20, 2007
The Accidental Blogger
We are honored to be asked recently by Prof. Christopher Scott of Stanford University to write a guest post on his blog, The Stem Cell. We had a difficult time writing the post because we've always felt rather uncomfortable when asked to give our advice on whether or not to go to China for stem cell treatment. On one hand, we don't want to appear standoffish by refusing to take a position but on the other hand, it is rather presumptuous of us to think that we're even qualified to lend our opinion on such sensitive and personal issues as someone's health and well-being.
Saturday, October 20, 2007
News from Down Under
We were alerted to an article in 6minutes.com titled "Hard sell on Chinese stem cell cures" that commented on my post about ethics.
Friday, October 19, 2007
Visit to Southland
We've just returned from visiting Los Angeles and Irvine this past week. Coincidentally, it is USC's Trojan Parents' Weekend so we got to spend some time with Andrea.
It has been six months since we've returned from China and time to see Dr. Perlman at UCLA for another evaluation. We have been told by Beike that we should be seeing some improvement (if any) by six months, if not before. On this visit, Richard lost a few points on his SARA score compared to his May 2007 exam. His speech, hand-eye coordination and foot-shin test were a little worse. However, Dr. Perlman remarked that Richard looked very alert and healthy. His energy level and stamina remain good. Furthermore, Dr. Perlman shared with us news that there are at least two exciting medical trials for Ataxians that will be upcoming in 2008. It is therefore important for SCA-ers to get registered with the Cooperative Ataxia Registry in order to become part of the database of patients. We are eagerly waiting for further news in the coming year.
While at Dr. Perlman's waiting room, we saw Mike and Jody from the Northern California Ataxia Support Group. Like us, they were taking advantage of the fact that ACARM is in Irvine this year to piggyback their medical visit with the conference. Speaking of ACARM (All California Ataxia Research Meeting ) 2007, the topics were germane and informative and the speakers lucid and knowledgeable. The audience was smaller than expected but those who came were very dedicated. There were quite a few who had traveled far. One person came all the way from the UK. Two of the non-Californian attendees were Kim and Sally Poor from Arizona. We have never met the Poors although we were familiar with Kim's blog and his experience in China which helped convince us to give stem cell therapy a try. It was good to finally meet them in person.
It has been six months since we've returned from China and time to see Dr. Perlman at UCLA for another evaluation. We have been told by Beike that we should be seeing some improvement (if any) by six months, if not before. On this visit, Richard lost a few points on his SARA score compared to his May 2007 exam. His speech, hand-eye coordination and foot-shin test were a little worse. However, Dr. Perlman remarked that Richard looked very alert and healthy. His energy level and stamina remain good. Furthermore, Dr. Perlman shared with us news that there are at least two exciting medical trials for Ataxians that will be upcoming in 2008. It is therefore important for SCA-ers to get registered with the Cooperative Ataxia Registry in order to become part of the database of patients. We are eagerly waiting for further news in the coming year.
While at Dr. Perlman's waiting room, we saw Mike and Jody from the Northern California Ataxia Support Group. Like us, they were taking advantage of the fact that ACARM is in Irvine this year to piggyback their medical visit with the conference. Speaking of ACARM (All California Ataxia Research Meeting ) 2007, the topics were germane and informative and the speakers lucid and knowledgeable. The audience was smaller than expected but those who came were very dedicated. There were quite a few who had traveled far. One person came all the way from the UK. Two of the non-Californian attendees were Kim and Sally Poor from Arizona. We have never met the Poors although we were familiar with Kim's blog and his experience in China which helped convince us to give stem cell therapy a try. It was good to finally meet them in person.
Sunday, September 30, 2007
Of Mice and Men
Since this is Sunday, I'll take a break from speechifying and let this YouTube video do the talking. I bet the audience would not be laughing if they were watching three people on the spinning rod instead of three mice. Here's another one about this type of experiment.
On another note, I found out as I was looking for additional YouTube videos about SCA that there is an experimental rock group called Ataxia. If a punk rock group can call themselves the Dead Kennedys, I guess anything is up of grabs.
On another note, I found out as I was looking for additional YouTube videos about SCA that there is an experimental rock group called Ataxia. If a punk rock group can call themselves the Dead Kennedys, I guess anything is up of grabs.
Thursday, September 20, 2007
International Ataxia Awareness Day
Next Tuesday, September 25, 2007, is International Ataxia Awareness Day. The purpose is to create awareness of this relatively rare disease. I am getting a head start in doing my part by posting to this blog in the hopes that you will click here to learn more about Ataxia and how you can help in this effort.
Please consider making a donation to the National Ataxia Foundation by clicking here. Your gift will help Richard and others suffering from this terrible disease through funding the research needed to find the cure. Thank you for your support.
In terms of Richard's progress, there's not much change. He has recently started to work at home with a personal trainer once a week on additional exercises to strengthen his muscles. Despite Richard's diligence in working out at home, at the Y and at his weekly Pilates sessions, he has found that his muscles are getting weaker. Moreover, his sleep has been poor lately due to night terrors. He'll probably ask Dr. Perlman if there's medication for the night disturbances.
Please consider making a donation to the National Ataxia Foundation by clicking here. Your gift will help Richard and others suffering from this terrible disease through funding the research needed to find the cure. Thank you for your support.
In terms of Richard's progress, there's not much change. He has recently started to work at home with a personal trainer once a week on additional exercises to strengthen his muscles. Despite Richard's diligence in working out at home, at the Y and at his weekly Pilates sessions, he has found that his muscles are getting weaker. Moreover, his sleep has been poor lately due to night terrors. He'll probably ask Dr. Perlman if there's medication for the night disturbances.
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