I am Judy, Kenyan and 36 years. My father got SCA from his mother. He died 10 years ago. My elder sister died from SCA a year ago. My kid sis 28, who used to live in the USA just came back to Kenya and she has visible signs of the disease. I have not been tested. My elder sister saw a neuro in Kenya who had never seen an actual case of SCA in Kenya...so you can imagine treatment options are limited in Kenya. Anyway, I am moving to Sweden in a week or so but want my sister to start a daily regimen that will arrest the development of the disease. What medications are available to stop her from shaking and slurring her words? What should she eat and not eat? What vitamins should she take? I need to start her on this asap...I plan to take her to Europe for further treatment but that should be in a year or so, when i can afford it. Any help, suggestions and advice will be appreciated. Myemail is ■■■■■■■■■■■■■■■■■■■ SCA is very rare in Africa and in most cases, having it is a definite death sentence while i know that is not the case abroad. Please help!!
Thanks alot Marty. That is helpful information. I had heard about the gluten free diet but did not know gluten in the diet affects brain cells.
Marty said:
Hi Nima33,i have episodic ataxia type 2.which means i get the ataxia symptoms(balance,co-ordination,speech)etc at regular intervals.there are so many different kinds of ataxia,all of which affect someone differently.As regarding the vitamins to take,i find the best vitamin for me is B complex.it is the best vitamin i find that helps the brain function better.Also it will be very beneficial to go gluten free.or in my case,gluten reduced.i love my breakfast cerials too much,to go totally gluten free.gluten in the diet affects brain cells,so certainly keep gluten to a minimum.there are many people on this site who are much more informative than me.so before long all the replies will start......marty
I have CA and have no slurring.I manage.I am happy.You can get by with our disabilities.
My father died 23 years ago from Parkinsons but there is so much more they can do now.There is a lot of research so don't give up as a family.
Hi Nima33, I'm using my foods as medicine right now and find it's been helping me with all my symtoms because it's making me healther to handel what I need to do having ataxia.
I take vitimin suppliments also. I make sure to have D3, CQ10 200 x 3day,B complex mostly.
I eat protein and 2-4 vegtables in every meal. I make sure to have 2-4 fruits daily.
I make sure to eat at the same time each day, and sleep 9 hours at night. I also take a nap if my body reqires it (I have to listen to what my body wants).
I make sure to do focused movements throught my day when I feel stiff in one area. Streching is very helpful to keep my joint more fluid so I can funtion easier. If you have access to youtube try some Yoga and Pilaties along with meditation. I think that everything that I do adds up helping if I focus on it helping, no matter how small.
Good luck with everything. Please feel free to message me when ever. :0)
Jambo / Hello
have a look at http://www.facebook.com/pages/Ataxia-South-Africa-ataxiafriendsagmailcom/165483150143163?v=wall
Ataxia South Africa
moderator is visiting UK for the AtaxiaUK conference
Alan
Thanks alot Jeannie, Your answer covered alot. Do you not take any carbs? I will get her yoga and pilates videos and she can do that at home. I want to buy her the WII fitness machine. She was not in Kenya and just came back home so we just wanna start on something now bbefore I settle in Sweden and arrange for her to travel to South Africa, India or Europe. Where do you live?
Jeannie Ball said:
Hi Nima33, I'm using my foods as medicine right now and find it's been helping me with all my symtoms because it's making me healther to handel what I need to do having ataxia.
I take vitimin suppliments also. I make sure to have D3, CQ10 200 x 3day,B complex mostly.
I eat protein and 2-4 vegtables in every meal. I make sure to have 2-4 fruits daily.
I make sure to eat at the same time each day, and sleep 9 hours at night. I also take a nap if my body reqires it (I have to listen to what my body wants).
I make sure to do focused movements throught my day when I feel stiff in one area. Streching is very helpful to keep my joint more fluid so I can funtion easier. If you have access to youtube try some Yoga and Pilaties along with meditation. I think that everything that I do adds up helping if I focus on it helping, no matter how small.
Good luck with everything. Please feel free to message me when ever. :0)
Hi Alan, I just liked their page on FB and will find out what kind of help is available in South Africa.
Alan Thomas said:
Jambo / Hello
have a look at http://www.facebook.com/pages/Ataxia-South-Africa-ataxiafriendsagma...
Ataxia South Africa
moderator is visiting UK for the AtaxiaUK conference
Alan
What about refined foods and sugar? Should she cut that out?
Jeannie Ball said:
Hi Nima33, I'm using my foods as medicine right now and find it's been helping me with all my symtoms because it's making me healther to handel what I need to do having ataxia.
I take vitimin suppliments also. I make sure to have D3, CQ10 200 x 3day,B complex mostly.
I eat protein and 2-4 vegtables in every meal. I make sure to have 2-4 fruits daily.
I make sure to eat at the same time each day, and sleep 9 hours at night. I also take a nap if my body reqires it (I have to listen to what my body wants).
I make sure to do focused movements throught my day when I feel stiff in one area. Streching is very helpful to keep my joint more fluid so I can funtion easier. If you have access to youtube try some Yoga and Pilaties along with meditation. I think that everything that I do adds up helping if I focus on it helping, no matter how small.
Good luck with everything. Please feel free to message me when ever. :0)
Yes, I forgot to include that. Sorry! For breakfast I have Yogurt berries and "Migthy tasty cereal" by Redmill which is a cooked grain.
I have a grain at each meal also. Potato's-sweet potato, Gluten free pasta (very, very limited since I don't do much flour at all but occationally), lots of beans, brown rice or Quinia. Gluten free. :0)
Adding Good Carbohydrates
For optimal health, get your grains intact from foods such as whole wheat bread, brown rice, whole grain pasta, and other possibly unfamiliar grains like quinoa, whole oats, and bulgur. Not only will these foods help protect you against a range of chronic diseases, they can also please your palate and your eyes.
Until recently, you could only get whole-grain products in organic or non-traditional stores. Today they are popping up in more and more mainstream grocery stores. Here are some suggestions for adding more good carbohydrates to your diet:
Try brown rice with a twist: Check out this recipe for Spicy Coconut Rice with Limes, courtesy of Harvard University Dining Services.
- Start the day with whole grains. If you're partial to hot cereals, try steel-cut oats. If you're a cold cereal person, look for one that lists whole wheat, whole oats, or other whole grain first on the ingredient list.
- Use whole grain breads for lunch or snacks. Check the label to make sure that whole wheat or another whole grain is the first ingredient listed.
- Bag the potatoes. Instead, try brown rice or even "newer" grains like bulgur, wheat berries, millet, or hulled barley with your dinner.
- Pick up some whole wheat pasta. If the whole grain products are too chewy for you, look for those that are made with half whole-wheat flour and half white flour.
- Bring on the beans. Beans are an excellent source of slowly digested carbohydrates as well as a great source of protein.
As far as the Nintendo system The wii fit Plus is truly great!It has yoga, strength training, ballancing along with fun games for cognitive thinking. It even has meditation of it! Ithelps with the balancing issues and cognitive thinking! Great choice. I also believe that having to use the remote to point and click is exersice in itself for cognitive thinking and helps with moter skills too!
For food intake I've been experimenting with diffrent foods and elimination of diffrent foods. I give them 4-6 weeks to see if they will work for me. Since everyone is really diffrent trial and error is huge.
Also, When you get a chance check out Dr. Tom Clouse's site. He has lot's of great tips http://walkingwithataxia.com/INHERENT%20PROBLEMS%20AND%20ISSUES.htm .
Thanks alot Jeannie. I checked out Tom Clouse site. It is hard to find gluten free pasta, quinia, bulur, wheat berries in Kenya. But there is some stuff available. Anyway, I now have a general overview of what I really need for my sister. Will keep in touch, thanks again. where do you live?
Jeannie Ball said:
Yes, I forgot to include that. Sorry! For breakfast I have Yogurt berries and "Migthy tasty cereal" by Redmill which is a cooked grain.
I have a grain at each meal also. Potato's-sweet potato, Gluten free pasta (very, very limited since I don't do much flour at all but occationally), lots of beans, brown rice or Quinia. Gluten free. :0)
Adding Good Carbohydrates
For optimal health, get your grains intact from foods such as whole wheat bread, brown rice, whole grain pasta, and other possibly unfamiliar grains like quinoa, whole oats, and bulgur. Not only will these foods help protect you against a range of chronic diseases, they can also please your palate and your eyes.
Until recently, you could only get whole-grain products in organic or non-traditional stores. Today they are popping up in more and more mainstream grocery stores. Here are some suggestions for adding more good carbohydrates to your diet:
Try brown rice with a twist: Check out this recipe for Spicy Coconut Rice with Limes, courtesy of Harvard University Dining Services.
- Start the day with whole grains. If you're partial to hot cereals, try steel-cut oats. If you're a cold cereal person, look for one that lists whole wheat, whole oats, or other whole grain first on the ingredient list.
- Use whole grain breads for lunch or snacks. Check the label to make sure that whole wheat or another whole grain is the first ingredient listed.
- Bag the potatoes. Instead, try brown rice or even "newer" grains like bulgur, wheat berries, millet, or hulled barley with your dinner.
- Pick up some whole wheat pasta. If the whole grain products are too chewy for you, look for those that are made with half whole-wheat flour and half white flour.
- Bring on the beans. Beans are an excellent source of slowly digested carbohydrates as well as a great source of protein.
As far as the Nintendo system The wii fit Plus is truly great!It has yoga, strength training, ballancing along with fun games for cognitive thinking. It even has meditation of it! Ithelps with the balancing issues and cognitive thinking! Great choice. I also believe that having to use the remote to point and click is exersice in itself for cognitive thinking and helps with moter skills too!
For food intake I've been experimenting with diffrent foods and elimination of diffrent foods. I give them 4-6 weeks to see if they will work for me. Since everyone is really diffrent trial and error is huge.
Also, When you get a chance check out Dr. Tom Clouse's site. He has lot's of great tips http://walkingwithataxia.com/INHERENT%20PROBLEMS%20AND%20ISSUES.htm .
Hi Judy,
do you know the specific mutation? Which SCA is in your family? This could make a difference. When you know ths SCA, it s easier to find reviews and studies who deal with this special SCA. There are actually 26 (or 28) sorts of SCA which have been described..And already a lot of info. Has anybody in your family done a testing?
Kind regards , Akita/Margarete
Na33, I live in Ca and we tend to have more access to Gliten Free foods. But actuallh what I find that’s much easier to for me to do is just avoid all flours and just do things without sauces so it’s a guarantee I don’t eat any by mistake.
Usually Gluten is in 2 or more spices in one jar. Its the binder, like glue that holds things together. So to be safe what I do is use them separately.
Following GF diet usually isn’t a cure, but it can help make Simone stronger to deal with physical problem, at least I think it’s been making an improvement and has for me! ;0).
Hi Akita,
We do not know what type of sca it is ...no one has been tested yet. My sister Elizabeth who passed on a year ago had an MRI done which showed significant shrinkage in the cells in the cerebellum but genetic testing is unavailable in Kenya, no blood tests were done. The neuro who saw her actually confirmed it as SCA....despite Elizabeth being his first actual SCA patient in Kenya. I will be tested in Sweden and so will Becky in a few months time or in a year. My sister also has a 14 year old daughter and I want to organise for her testing in Sweden as well.
Hi Nima33,
there have already conducted some studies on or with SCA - Testing in Africa in the last few years, so in Ruanda, Mali, Nigeria and South Africa. Supposedly they sent in the probes into a laboratory in Great Britain oder UK. There exists a seemingly specialized laboratory in the University Clinic of Mali. If you typ in into Google "Kenya Neurology" you will find some phone numbers of neurologists in Kenya, including the University Hospital. I am almost sure that the laboratory or the neurologic department will be able to give you information how CNA genetic testing could be managed from Kenya. Maybe they will send the probes to Mali, Ruanda, - or even the next laboratory, or they even know about an ongoing study in Kenya. There is also a corresponding adress available on www.pubmed.org in one of the recent studies from a participating specialist in Brussels, whom you can try to reach. Supposedly he has actually the best overview about the genetic testing facilities in Africa. As i actually don`t know how to copy the links to the studies into this forum, i will send them to you with the contact informations by email. Perhaps it could also be helpful to phone to the other neurolists in Kenya you will have found be the above described method. Perhaps one of them has already done genetic testing for sca, or som genetic/molecular testing, which is perhaps more common for other heridary diseases besides SCA (trisomie 21 etc.) In my experience the corresponding adresses of studies mostly don`t answer to your email, so you should try to find out the phone number and also postal adress. Not hesitating to try this depite all contrary opinions, i tried to correspond with two hospitals in Turkey in the case of a man died from cancer. And they sent back the answers! Also it could be helpful if you would find out the email of the doctor who actually is treating/ has seen your daughter, for future correspondence, which correspondence could be somehow proovread by western specialists (or even done). As far as i know from my reading in the last few days - i a good in reading, but no medical doctor - it could be possible to narrow the search for the special SCA disease which is in your family. Therefore it would be necessary for me to know more details. But i suppose, that others in this forum have already a clearer opinion of the problems your daughter has got actually and how to help. Gluten-free food could be crucial. I did not know this, but now, after having read the answers - last from Jeannie Ball - i am almost sure that this works for me, too. Yesterday and a week ago i was invited by a friend for dinner in a chinese restaurant, and was, after that, not able to walk on my feet so well, that i could have returned to my home without taking a taxi. In all the studies regarding SCA i did not read about that. So i wish you a nice day! Its now 9.43 am in Vienna Austria, -where are you!
Kind regards,
Margarete
Hi Judy,
there exists a medication Acetazolamide unter different trade names, so Diamox. Maybe it would be possible for you to contact - maybe by your daughter, bringing him infos about this - the neurologist of your daughter, if he knows the medication, if he considers to treat her with this medication. If no, - why not. Is the med not available in Kenya? In this case it could be bought by internet. In Austria it is much more cheaper than in international pharmacies i found in the internet (250 mg, the smallest tablet 20 tablets 4,60 Euros in Austria) If you would need a prescription to obtain the med, the neurologist in Kenya could write a recipe, which you could use, scanned in - after my experience with CPAPs. Hopefully, other members of the forum can give you more infos about Acetazolamide. I it said in my view, that it could help in acute cases and also to prevent future ones, not helping eveybody, but not dangerous to try. A doctor always should see your daughter and do some blood tests, i suppose. There are lot of web infos for the medicament you could send to the doctor of your daughter so that he can decide to provide her with the med or not. Kind regards, Margarete
Wanted to add: There is EMS International postage where it could be possible to send in probes to a western oder african specialized laboratory. But if you would not be able to narrow the scope of the probable mutation in your family, the testing could become expensive; perhaps there still is no genetic testing available for your family mutation, but from the CNA symptoms the doctor should be able to decide on a treatment for the actual situation. When he already knows the disease "CNA" - otherwise he would not have diagnosed her with that, he could already have treated/seen other CNA-patients and have some experience. It would be interesting to know for me: What did he tell your daughter to do now? Any medication given? Then, it could be also helpful to know the geographical area or ethnicity from where your family derives. Sometimes same SCA mutations accumulate in one area or ethnicity. E.G. high mountains area, or jewish origin of family ancestors, called founder effects. When you are informed about such details it could be moreover helpful to try to contact neurologists if they are already treating persons of this ethnicity or this - especially high mountain area. These could bring in extra expertise on how treatment could be successfull. In my impression - after searching in the study database of pubmed - SCA-patients have been treated in the past in africa under other diagnoses than SCA, because the genetic testing is young, but the mutations and ataxias are mostly old/ancient.
Kind regards, Margarete