This happened in March 2006 and I am really having a tough time. I have taken up a jon but we have a housing loan , his peronal loans, credit cards, medical bills etc and more over wjhat could help in ataxia vas people say there is no cure? has stem cell research worked or is it still aresearch . What could make him altleast independant?
2006-09-14 01:38:17 · 7 answers · asked by Sunita D 1 in Health ➔ Diseases & Conditions ➔ Other - Diseases
i would look into the stem cell and see if there has been any one get better with it ask around it cant hurt good luck
2006-09-14 01:41:53 · answer #1 · answered by carolea_lamblin 3 · 0⤊ 0⤋
Sorry to hear that.
You might want to visit these websites. It may help you.
http://www.ataxia.org.uk/page.builder/publications.html
http://myweb.tiscali.co.uk/ataxia.pages/#ATAXIAPAGE-Disease_Management
Recent work
Recent experiments from Harvard University, reported in Science in August 2005, show that it may not be necessary to use a human egg to make a stem cell from a skin cell. Dr Kevin Eggan and his team showed that if you join a skin cell to an existing embryonic stem cell, it seems to ‘wind the clock back’, and the skin cell (which could be from a patient with ataxia) becomes able to mature into nerve or muscle cells. There is a lot of interest in these approaches in the UK, particularly in Newcastle University and Imperial College London.
There is no guarantee that the new stem cell techniques will solve the
problems for people with ataxia, but I believe that stem cells represent a
genuine hope for the future.
Bob has been a patron of Ataxia UK since 1991. As a human molecular geneticist who had worked on similar problems with cystic fibrosis, he was closely involved with starting Friedreich’s ataxia research at St Mary's Hospital Medical School, University of London. With Sue Chamberlain, he set up the first group hunting for the Friedreich’s ataxia gene in London in 1987, and located the gene to chromosome 9. In 1995 he moved to Melbourne, Australia to take charge of the Murdoch Institute, a research centre with over 600 staff devoted to studies of genetic disorders and child health. He continues to work on Friedreich’s ataxia.
2006-09-14 01:45:59 · answer #2 · answered by finalmoksha 3 · 1⤊ 0⤋
I am sorry to hear about your husband. Mine was injured in a freak accident some years ago, and left confined to a wheelchair and pretty much bedridden. It is a tough job to keep financially afloat, as well as emotionally, especially hearing that this may be permanent.
I am not expereinced with this disease, but would like to offer some advise, if I may.
If you have not already, I would definately begin applying for Social Security disability. ( I am asuming you are in the US- if not, my apologies here) It may be a while before it begins ( they have regulations on how long you must be disabled, etc. ) but getting it prepared takes time, and it would be good to everything ready to file when you can. You do not need a lawyer for the first application. When applying for SSD, you can also apply for SSi, which helpes low income people when disabled. Its worth applying for- you never know.
Look online for any support groups you can find for his disease. There are many support groups on sites such as Yahoo, but also MSN, topica, etc. There may also be a national group you can join as well. It is important to connect with others in your position- not only can it give you treatment options, by seeing what other people have tried and what doctors they have seen, but also provide some support for you.
If you belong to a church, let them know upfront what kind of situation you are facing. They can often be of support- sometimes they can help financially if you are in crisis.
You could also try contacting the United Way, to see if there are any programs in your area that could offer assistance as well.
If you are in the US, also see if your state offers any caregiver grant. Va. is one that does- its not much, but every bit counts. If they dont, ask your local representative to push for one in your state. Too many of us care for relatives or spouses and we get no compensation or tax break or financial recognition, and we should.
Please try to find a group for support for yourself. Being a caregiver can be tough- you may need some emotional supoprt, and there are many others like you out there, you are not alone. I wish the best for you and your husband.
2006-09-14 02:41:06 · answer #3 · answered by Anonymous · 1⤊ 0⤋
really v v sorry ,i agree with this ans.
I highly recommend a movement disorder specialist...this disorder is poorly understood...even by neurologists. I do have a patient who has this and her doctor just moved to California and she is at such a loss. I have inlucded a link to the national ataxia website which includes links to various ataxia clinics. I imagine they all have movement disorder specialists as part of their team.
http://www.ataxia.org/links/ataxia-clini
2006-09-14 22:43:05 · answer #4 · answered by doctor asho 5 · 0⤊ 0⤋
I highly recommend a movement disorder specialist...this disorder is poorly understood...even by neurologists. I do have a patient who has this and her doctor just moved to California and she is at such a loss. I have inlucded a link to the national ataxia website which includes links to various ataxia clinics. I imagine they all have movement disorder specialists as part of their team.
http://www.ataxia.org/links/ataxia-clinics.aspx
2006-09-14 02:40:55 · answer #5 · answered by mistify 7 · 0⤊ 0⤋
poor guy. theres no cure and the condition will only progress and get worse.
2006-09-14 03:29:42 · answer #6 · answered by shigatoxin 2 · 0⤊ 0⤋
Is he a jon?
2006-09-14 02:33:26 · answer #7 · answered by Linda J 1 · 0⤊ 0⤋