I have SCA type 2 and have had it for almost 10 years. I have a walking stick which I need to use when walking alone. This last year my ataxia has progressed quite fast although up until then quite slowly. I know every case is different but how have other peoples ataxia progressed over time? I also have problems with coughing, speech and coordination. Can anyone recommend any supplements they take and work? My main fear is not knowing how this disease will progres and its speed.
Thanks
Louise
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weegiz12345
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I was medically retired early from my job in Security, because my legs let me down in my annual medical..... arthritis in both knees, wide gait when walking, bad balance..... I started walking with a walking stick, which progressed to two walking sticks, then a manual wheelchair, and my wife would push me when I got tired.
I was diagnosed as disabled by my GP, I applied and was awarded Disabled Living Allowance(now pip) but I’m still on DLA because of my age.
I have a motability car paid for by DLA which my wife drives as my carer, and because my wife has difficulty pushing me in my wheelchair, the Royal Air Force Benevolent Fund have given me an electric powerchair, so in answer to your question Luoise, for me, fifteen years from early medical retirement to life in a wheelchair with my wife as my carer.
But all of my medical problems will not beat me, I will remain as upbeat and cheerful as I can until my time is up.
Hi Don, Many thanks for your reply. You're an inspiration you don't let your ataxia get you down. I try to be as positive as I can but I get so frustrated at myself when I can't do things, when you're able bodied and you can do most things being unable to do lots can get you down. I try to think there's always someone worse off than me. I'm still employed full time at the moment (I'm 57) but get very tired by the end of the day and my balance by then is appalling. Reading some of the posts makes me realise lots of people are going through exactly the same things as me, the coughing, writing and keyboard skills and it makes me feel better knowing its not just me. I also feel better knowing I can share things with folk on here.Thanks again for your comments,
I am 42 and diagnosed 2 years ago with sca2...My bro has it as well...If I 70% he 30%, but a difference is I WAS NEVER 100% since the birth. A lot masked by my allergy, eczema, asthma...Asthma gone dormant, but KNOW ABOUT IN NOW, suffere from breathlessness, easy panic attacks, influencing the breathing...all my life watched allergy, looked after the skin...I use walker everywhere....my visible aid, for balance...cannot walk long distance...
take a strong monthy dose of medic. vit d3...cropped up in the blood as insufficiency.
take vit b from B1,2,6.all do it b12, injections are the best, I only have access to over the counter vit. and doses...
IF GLUTEN ALLERGY, on on gluten free ONLY DIET.
I had extensive physio in the hospital, but do the core exercise AT HOME, plus the ones prescribed by the hospital...
can't think straight, bereaved my hubby after 19 years of marriage passed on...
technically speaking look after yourself, mental side as well, stay positive, ataxia is shyte, but NOTHING AS BAD AS A CANCER...
I suppose progression little, my grandma had it and happily lived till 72. On the English terms a spring chicken, but in Slovakia good innings...
Thanks for your reply. I suppose you're right even though ataxia is what it is it's not cancer. I suppose the best thing to do is just get on with life. Eat and live as good as you can,try not to dwell on it and get sucked under by it. I'm not as bad as you or your brother. Thanks again for the positive message and look after yourself.
I will tell you it may not be as bad as cancer but it will consume you’re mind 23hours and 58 minutes a day. I know this because I was also diagnosed with the worse type of skin cancer. Every 3 months I get something cutoff my skin. While they’re cutting me I only think about how I’m going to walk back to the car.
I also am rehabbing a torn acl and meniscus. But feeling dizzy and seeing double consumes my day.
You have to think about your sca before you order food. You have sca restrictions before you drive.
It’s all consuming. But I still walk to the beach with the help of my wife. I still surf if I can get someone to help me out of the water.
I sure miss riding the bicycle though.
Keep moving forward and stay ahead of this thing that got us all.
Saying that someone has it worse I find is an excuse for people not to have as much motivation.
Hi, I noticed my condition got worse each time I gave up something I did all the time.
8 years ago my job was relocated to the country. First year winter was fine for my motorbike but come the second year there was to much ice for me to use the bike.
For the first time ever I had to use my car to get to work over the winter.
I have never used my motorbike since.
At the same time I was injured in a boxing fight. I had to get physio and was not able to train.
Stopping the use of my motorbike and not being able to train at the boxing club caused my Ataxia to go though the roof.
I stopped work last December and have got a lot worse.
Thanks for your reply. I suppose your message is keep doing as much as you can. As they say don't let the bu**er get you down. Wishing you lots of positive thoughts,take care.
Hi my names Claire and I HAVE EPOSODIC ATAXIA Type 2 I am 42 years young, I had to give up my job as a health care assistant due to my condition and its many symptoms,.
Like you my progression was slow but I am now progressing at a much quicker rate I now use a rollater but deep down I know I will soon have to rely on the use of a wheelchair more so because of fatigue all on all the progression as been around 6 years.... But like you say everyone's journey is different just keep positive and keep smiling 😊
Thanks Claire for replying, it's good to hear I'm not alone. I think I've just got to take a day at a time. Also like you say everyone is different so make the best of each day. Take care
Hi. I am diligently following the researched suggestions posted by sunvox on this site. He has done an extroadinary amount of evidence based research and always links the scientific publications that he cites here. He includes all the supplements, nutrients, exercise routine, etc., that has kept his ataxia symptoms away. He is a very caring man who is kind enough to want to help this community with his research. Look up his posts.
My husband is the same as you. Lately his walking, speech, coughing is worsening. We see his neurologist in a few weeks and hope to get answers. What is the long term effects with ataxia and is it a disease that will take your life or you will be wheel chair bound. Anybody out there can be up front and let us know. The doctors don't say much, they just say enjoy your life. This disease is so frustrating to watch and so very little answers or cure.
Thanks for replying. Like you say there’s not much known about ataxia. None of us know what the future entails. You must live a day at a time, try not to look into the future too much. Take care and I hope your visit to the hospital goes ok.
Hi Louise. I have late onset cerebella ataxia. I’ve probably had symptoms for 3 years, but was diagnosed 2 years ago via an MRI. I know I am luckier than many. I am 71. I have found my symptoms (balance, speech and writing) have worsened lately. I live alone and don’t like the impact on my independence and spontaneity. I do use a stick sometimes but don’t find it helps much with my walking/balance. Adapting to the changes, not knowing what’s coming, is hardest, especially on my own. I do find an arm to lean on is great!
I take Phosphatidyl Serine supplements, but don’t really notice any difference! I try to eat a healthy diet but lately have a sweeter tooth. I am lazy about physio at home but do go to Pilates once a week. I love walking but it’s getting more difficult. Judy
Thanks for your reply Judy. I live with my partner and don't know how I'd manage on my own. I find honestly my stick at times just gets in the way but always good to have it waiting in a queue for something. I try and eat healthy if possible but like to have a treat once a week. I think from reading posts on here I should really consider myself quite lucky too, there are people a lot worse than me even though the last year my symptoms have got a lot worse. Take care of yourself.
Well Weegiz .... your situation seems to be relatively normal for the length of time you've carried this awful condition. I was diagnosed about eight years ago although I suspect that ataxia had affected me for a year or two before I sought medical advice and an eventual diagnosis. Reading your post I was struck by the similarity of the symptoms we experience. My balance is terrible, I use a walking stick,(as yet my speech is not affected,) I find difficulty clearing my chest ... hence a cough. Fatigue is an ever-present limitation to activity, that's double-edged because not only does it discourage activities or occasionally totally prevent them but it also in me produces feelings of guilt because I'm not doing more.
I don't take supplements but I do believe that I eat what would be regarded as a relatively healthy diet. That sounds smug but I don't really want to overload my failing body with an excess of tablets. I do however exercise and in particular I exercise my legs. I walk a mile every day. I know its that distance because our local parks dept has obligingly recorded the distance around the circumference of a local park lake. I also visit the gym' twice a week where I cycle and use the treadmill. I do believe this helps in that strengthening my leg muscles helps me to deal more successfully with my balance problems.
Good luck . We're all sailing in the same direction but nevertheless we can wherever possible through this site mitigate isolation, bewilderment and sometimes downright fear in our fellow sufferers.
Hi Piero I can't believe how much your symtoms mirror mine. The walking with the stick, the cough. My speech is not affected but occasionly I can hear some of my words are a bit sqiff. My coughing seems to be getting slightly worse especially when I eat certain foods. One of colleagues mentioned the other day i was coughing more than normal. Do you have problems with typing and handwriting. Everything I type must be read as i type so many mistakes and my handwriting is worse than the worse doctors :-). I don't take supplements and hope I eat an ok diet. Like you I use an exercise bike. I was told by my consultant it was not safe to use a treadmill. I just want to keep my legs as strong as i can.I like your idea of walking a mile a day, not sure if I can manage that. Up till about 3 years ago I was doing over 10,000 steps a day, no longer though.
Wishing you all the best and I must say i feel tons better knowing I'm not alone.
It seems you are doing ok on the time scale of Ataxia. I'm 4 or 5 years into it and have the symptoms you decribe now for a lmost a year, I find it difficult to speak on the phone, this I delegate.
I have a low tolerance to stress or anxiety which affects me adversely in speech, vision, and mobility causing me to seek security of a safe place to sit.
For a cough I take a small amount of Colemans English Mustard, the mixiit type but just enough to do the job, just a taster, you will feel it pass over the cough spot, it's effect are instant. High quality B12 tablets, and coconut oil on yer toast or in yer fairy cakes.
Hi Stedman Thanks for your reply. I realise now from posting I'm not as bad as lots of folk which I'm really grateful for.I'll try the B12 tablets but I can't think about the mustard. It's one of the foods I can stomach Take care of yourself.
Hi Louise, I am 43 with CA with 4 years already (Genetic). We have this lovely forum with lovely people where we feel like family and always hoping positive
For meds, a month ago my doc started new meds levodopa/caribidopa and it helped to stayed up my balance and fatigue improved 40-50%. if you haven't tried this before i would suggest to try this once. Concern your doc.
I must say ldopa is has some special features with cdopa mechanism and its it come is worthy.
Louise, these meds are normal and available all over the globe incl. UK as well. Talk to your doc. for this. I wish things gets better for you. I live in Pak.
Hi, Louise,I'm 44 and they say at present I have progressive Ataxia cellabella ,I was told last August ,my top gait is very wobbly,I've had a persistent cough for 2yrs ,speech I sound like Bonnie Tyler lol, always have sore throat,, fatigue,can not talk on the phone at all,I'm also blind in the right eye Not through Ataxia, fibromyalgia and hypjiont mobility ,wall and door frames love me,haha,I now have to use a wheelchair out,and have a powered chair indoors ,cry scream, then try and carry on ,we are all strong people hugs ,Margie x
Thanks for your post. I understand wall and door frames they love me too. So many of the things people say affect them affect me, I thought I was the only one. Take care
I'm taking high doses of thiamine, cod liver oil and lions mane supplement I read about that was recommended to help with SCA2.
I'm 32 now, I'm still walking..or waddling I'd say ...it's really painful on my legs and wears me out. I rake pregablin and codrydomol for the pain...I wish I didn't start them so young. How are you getting on?
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The 3 main ‘types’ of ataxia (not SCA)
Newly diagnosed SCA
Spinocerebellar ataxia with oculomotor apraxia type 2
SCA type 6
