My name is Dominique and I have two brothers who are suffering from SCA10. Over the last 9 years, the disease has taken a toll on their bodies as well as devastated the rest of the family. It has been hard to say the least, especially for my mother who is their caregiver as well as guardian to my brother's three sons. We have dealt with everything from epilepsy to psychosis as well as extreme weight loss. It's been heartbreaking to watch two people I love go from normal, healthy adult men who were living their lives to shells of themselves in such a short period of time. It's so frustrating not having solutions and at this point I'm in a desperate race against time not only to save my brothers, but also to save my nephews who have a 50/50 chance of being diagnosed as well. With that said I am considering Stem Cell Treatment for them and wanted to know if anyone else has had any success with it? I have seen videos on Youtube which have given me some glimmer of hope. It is extremely costly so I am trying to come up with ways to fund raise. That will be a challenge in itself since I will have to do it for two people rather than one but I feel like that's the only chance they have. The other question I had for everyone was have you found any ways to counteract the weight loss? My mother gives them protein shakes and at times they eat well, but no weight is gained. More recently they have had loss of appetite which worries me since they are both so frail and each only weighs slightly over 120 pounds. If anyone has any insight into Stem Cell Therapy or suggestions on gaining their weight back, I would be extremely appreciative.
I appreciate your frustration and your desire to find some effective treatment. At this time, stem cell treatment is usually not helpful–just expensive.
Hi,we are currently investigating stem cell treatment but I am I the UK, but the link to the site is www.natural-biosciences.com. Consultation is in the UK but the actual treatment is in
Zurich, Switzerland, because of all the red tape in the UK, good luck.
I am the same loosing weight and no hungry and no cure for the Ataxia, I am tired all the time I wish you the best finding a good solutions that every body with Ataxia is waiting for
Dear Dominique, How admirable of you to want to help your brothers! I can hear in your post how much you love and care for them. There was a time when I considered stem cell treatment, but my neurologist said stem cell research is still in it's infancy and not to do it. I echo what Shumant said, it's just expensive. Not to burst your bubble, but I think some people have a placebo effect initially when they do it. Then they come back home and everything goes back to the way it was before. There's there's the blood/brain barrier to overcome, as the stem calls are not being shot right into the cerebellum. I wish every day there was a cure for ataxia, but personally don't think stem cell therapy is there yet. Just my opinion. In regard to a good protein drink, has your mom tried Ensure for your brothers? Whatever you decide to do, I wish you the best and success for your brothers! ;o)
Domenique, there is a book I use to keep my stress level down: How Your Mind Can Keep You Well by Roy Masterson. If nothing else, this book will calm anyone and keep the negative thoughts from influencing their brain. There is a recording yo can order that goes with the book and you could use the recording to listen to together with your whole family. What you are doing with your support for your brothers is amazing. My blessing to you all.
Dear Dominique, How admirable of you to want to help your brothers! I can hear in your post how much you love and care for them. There was a time when I considered stem cell treatment, but my neurologist said stem cell research is still in it's infancy and not to do it. I echo what Shumant said, it's just expensive. Not to burst your bubble, but I think some people have a placebo effect initially when they do it. Then they come back home and everything goes back to the way it was before. There's there's the blood/brain barrier to overcome, as the stem calls are not being shot right into the cerebellum. I wish every day there was a cure for ataxia, but personally don't think stem cell therapy is there yet. Just my opinion. In regard to a good protein drink, has your mom tried Ensure for your brothers? Whatever you decide to do, I wish you the best and success for your brothers! ;o)
Domenique, there is a book I use to keep my stress level down: How Your Mind Can Keep You Well by Roy Masterson. If nothing else, this book will calm anyone and keep the negative thoughts from influencing their brain. There is a recording yo can order that goes with the book and you could use the recording to listen to together with your whole family. What you are doing with your support for your brothers is amazing. My blessing to you all.
Do you mind me asking how they administered the stem cells and what kind they used? I have heard that some do not work depending on the diagnosis you have such as bone marrow stem cells. I was told the ones that have to be used would be the fetal cells which are free of any genetic fingerprint. I'm told they create new and healthy cells that repair the damaged organs. Im wondering if that could be why some people say they have results and others don't since there are different types?
Tremeca Lee said:
I went and had stem cell treatment in09/12 and it have not worked...my symptoms are progressing but everybody is different
Hi,we are currently investigating stem cell treatment but I am I the UK, but the link to the site is www.natural-biosciences.com. Consultation is in the UK but the actual treatment is in Zurich, Switzerland, because of all the red tape in the UK, good luck.
I appreciate your frustration and your desire to find some effective treatment. At this time, stem cell treatment is usually not helpful–just expensive.
I think that’s wonderful you are looking into this for your brothers I know there isn’t much info yet on success, but this field in advancing so rapidly that who knows? They could very well have come up with effective therapies that just haven’t been fully tried and publicized yet. Good luck.