I was diagnosed with ATAXIA (SCA) in January. I am facing many limitations, like miobility and loss of balance, falling down and hitting my head. Furthertmore, I am looking for a job and when they see my disability, they just saY: "You hear from us." and this is the end becausde I never hear from them again. But the informatrion I am seeking iis what are ypu doing to relief the pain , lack of balance, etc. Any tips are appreciated.
What I have found to help me is my cycling. I ride an adult trike, and even if I'm not improving I'm not deteriorating.
Well I just lost my job because of the disability. I am going to receive disability by it wont pay the bills. I understand about people not hiring us. Even thou we know we can do the work! Yes it is very frustrating. We can only keep tiring! Sorry I cant help you because I'm in the same boat!
Dear John,
I was diagnosed with SCA2 in 2002. I swim because 3 hours a week know one knows I struggle to walk! Excercise seems to be the only "cure" for now. Swimming is easy on the body, but plenty of exercise. I am sorry getting work has been difficult and people do not understand. Amy
I can hardly walk or keep my balance,let along work.I've been medically retired since Oct. 2005.Have you thought about finding some kind of work that you could do from home?
Hi FC,
You're not alone. People here are having different situation - different symptoms.
When you are losing balance, be careful when walking because hitting head could happen again and it is harmful.
Once get hurt, it requires longer time to recover.
You have mentioned "pain", do you mean muscle cramps?
Keep a positive mind, be prepared that this is a long term fight.
Charmaine
I have sporadic cerebellar ataxia (non-hereditary/unknown cause). I was diagnosed 8 years ago and about a year ago I started using a cane as I started falling more frequently and started to hurt myself. I look at my cane as a "security blanket" as I feel much safer with it...ha! You didn't say if you use any assistance devices so think about at least using a cane. Also, exercise and keeping your muscles strong is very important. Doing some exercises for balance is very helpful for ataxia. I recently bought a book online called"The Balance Manuel" which is extremely helpful. Ofcourse make sure you hold on when doing exercises. I hold on to the kitchen counter and do alot of exercises sitting down or on the carpeted floor. I'm sorry about your job hunt and that people aren't tolerant of your disability. I retired from my job 6 years ago due to my ataxia. Don't give up though as someone will look beyond your disability and see how valuable your skills are! Keep moving as best you can even though it's much easier not too! In terms of pain I'm not sure what type of pain you have? If it's muscle spasms, stretching and exercising will help that...
My Cerebellar Ataxia was triggered in my late 50's. Apparently I had it from birth but being relatively mild, it wasnt a problem until I got older. Most people trip but dont fall over and young people dont get injured so easily but.. late onset CA is a real cause for concern. I have to 'take care' whenever I am on my feet or suffer the consequences.
There is no cure so 'managing' your ataxia is critical. This means, healthy diet, exercise and feeding the mind.
If you cant use regular exercise equipment, try passive exercisers such as pedal machine.
Some vitamins and drugs can help such as Co-Q10 to fight exhaustion, Baclofen for muscle relax/pain etc.
Hypnotherapy CD's for all sorts of things.. I use them for anxiety attacks.
Most important of all, remember to smile and laugh in the face of adversity.
I shall be 70 in November and have acquired this advice from forums.. it works for me.. I hope it does for you.
Take care, Patsy x
I was working my entire life. I had a wonderful job, for about 3 1/2 years. I had a few falls at work. Everyone saw how much trouble I was having just to get around. Last year, they "let me go". I think they basically fired me, they thought I was a liability. I was very upset. I thought being fired, that I could not even file for disability or unemployment. Before I left the office, they told me to file for unemployment, and collect the unemployment I could, then file for disability. I live in Pennsylvania, and any way, I got all my doctor records, and test from when I was diagnosed. I made an appointment with the Social Security office, and took all my records into the office to file. I can't believe it, but they gave it to me. It only took about 2-3 months. They scare you though, they tell you it will take 6 months. But I think since I had all my records there, it went through quicker. Good Luck with what ever you choose.
Dear John,
That was a very dark part of my life. No one understood my disorder and after 20+ years I was deemed a bad teacher, when in reality I was a liability. That was the only difference, my disabilty. When I needed support, I got bullying to the point of quitting. It is sad to be treated thzat way.
thank you for your advise.
Patsy said:
My Cerebellar Ataxia was triggered in my late 50's. Apparently I had it from birth but being relatively mild, it wasnt a problem until I got older. Most people trip but dont fall over and young people dont get injured so easily but.. late onset CA is a real cause for concern. I have to 'take care' whenever I am on my feet or suffer the consequences.
There is no cure so 'managing' your ataxia is critical. This means, healthy diet, exercise and feeding the mind.
If you cant use regular exercise equipment, try passive exercisers such as pedal machine.
Some vitamins and drugs can help such as Co-Q10 to fight exhaustion, Baclofen for muscle relax/pain etc.
Hypnotherapy CD's for all sorts of things.. I use them for anxiety attacks.
Most important of all, remember to smile and laugh in the face of adversity.
I shall be 70 in November and have acquired this advice from forums.. it works for me.. I hope it does for you.
Take care, Patsy x
Depending on what line of work you were in before have you thought about contacting a recruter or a head hunter to help you find employment? Or maybe taking a class to exspand something you can do at home on the computer everyday?
As far as your pain I can only tell you what seems to work for me. What I have to do for my health is similar to Patsy's but there are some diffrences (everyone that has ataxia is a bit diffrent so trial and error I find works).
I'm real resistant in taking any drugs myself because I just don't like the way my body response to them. I need to be more clear minded. That said my Dr. gave me Baclofin to take for relaxing my muscles so I could exercise short term to get me over that hump so I could do it on my own. So I was on them only before I had to exercise. I am taking Yoga/Balancing class, and another Piliaties class to stregthen my core and legs. It didn't take me long to get over that hump to be able to do it on my own. I'm very thankful for that! :0) Just a tidbit I found: acording to a study in Personality and Social Psychology just walking for 10 mins you feel the effects for 2 hrs afterwards. So after the 2 hrs are up I start to ache, I eather walk another 5-10 or use Anica gell for the pain and stiffness.
Inbetween I use the Wii fit Nintendo system (PT for my form and encurrages me to do more than I would alone). I also follow Dr. Tom Clouse's thoughts as much as possible for guidance. He's a Dr that has ataxia himself so he understands and give lot's of suggestions on movements (check out his website: http://walkingwithataxia.com/INHERENT%20PROBLEMS%20AND%20ISSUES.htm also watch this video he has: http://www.youtube.com/watch? )v=Br72k-LLXsc
I eat mostly raw foods (I found they give me more energy because they are alive and have more enzimes to head off my fatigue and give me energy to funtion as well as I can). I don't have any Gluten, Alcohol, refined sugars (man made Frienkenstine foods) in a box or preservites. I eat 4-6 hours for my energy. My last MRI's show that the degeneration of my cerebellum have stopped for now. I figue that I have to keep everything up because I think the combination of everything I'm doing is making that happen!
I meditate (pray) each am. It helps keep my head clear to funtion well. So I believe that everyone needs to have someone or something outside themselves no matter really what it is (mine is God) to help guide them through their journey having ataxia!
That's what is working for me. I find it really a full time job, an investment! :0) Good luck with your journey and challenges. It's way too easy just to give in to this ataxia, I find acceptance is good but exspecting more than yesterday keeps me moving though. :0)
P.S. I almost forgot something very important that helps me. I have to read daily positive things to help me stay more positive! Everything is just habbits now. :0)
I was classified as having late onset of Sporatic SCA and will be 52 soon.
I am in a worse situation my friend. I am a university graduate and a professional clinical hypnotherapist. I was working for National Phobic Society, now Anxiety UK. I feel my career is gone because of my condition. I can't practice anymore because of my mobility and speech. Self-Hypnosis is helping me to cope in some way.
For me after I accepted my life just looked diffrent than I planed and that I just got used to trying to accomplish something the same way I used to and had to be more creative in that process I began to get better, because I started working with my body and not trying to make it do something it couldn't.
Actucally your career as you may have known it to be before might be just going into a diffrent chaperter, and that's ok. All you have to do now is try to envission what you and your body can do in this new chapter not what you can't do anymore.Find new ways! :0)
Once you get over the greiving process of having ataxia (the way your understanding of life should be) you can start to re-envent yourself it's not that bad, we just go much deeper, we just have more challenges but life seems to mean much more. So you can use it to open up new worlds for you. Your just entering a new way of understanding life so you can help others even more now if you choose. Actually if you look at it it's more excighting. So it really will come down how you look at it. Right?
I was classified in 2004 with Sporatic SCA. Last chapter I ran and had my own Hair Salon business. I now have a power greater than myself which I call God. I'm living his will not mine anymore and I'm actually finding it's much better than I thought it would be.
What also helps me is my nutrition so I can maintain funtions as well as possible. No Gluten, or any additives, No refined sugars, exercising my core and maintaining my strength in my legs as much as possible, it's thought my days now.
I have to read positive thoughts daily also! I Please feel free to contact me any time with any concerns. Good luck on your new journey! It's not the end just a new begining! :0)
I have (I guess) later-onset SCA - I was diagnosed several years ago at 37. It hasn't been severe yet - I try to keep active as much as I can to try to hold off any worsening of its' symptoms. I try to get out to go for a walk or run every 2nd day or so - I'm sure people who don't know me must think that I am crazy to be running when drunk since I am all over the path! I think it does help, I'm sure it helps me mentally.
As for work, I do consulting work. My headhunter knows about my Ataxia - whether he tells prospective contracts or not is up to him. I don't try to hide it - I figure it will come out sooner or later, and if there is a fire alarm or other emergency where we have to get out fast, its better that those around me know!
Brian
WOW...such positive thoughts Jeannie! I just opened up my pc, went to this site and read what you wrote. Actually you helped immensely, as the past few days have been very challenging for me with my ataxia and I was having a mini-pity party. After reading your comments I am going to try to look at my ataxia in a different light. I'm usually a positive person and truly know I'm blessed! Thank you for making helping me remember that, even with all the challenges of ataxia!
Hi Rose,
Your not alone on that one about having pity parties! :0) I think we all need a bit of a pity party once in a while. I think we are alowed that every so often for what we have to deal with don't you? Leting go of something isn't always that easy. But that's why I really embrase change and challenges now. I guess I started thinking things were always going to change on me anyway I might as well create a lot so I could get used to having some. Then when something comes up I didn't exspect it doesn't throw me now because I'm used to going with the punches!
I think, having a bad day gives me a gage of what a great day feels like (and I choose to have make more when I can and ride out the bad ones because I know they will end, I schedualed it! :0) ). I like to just give myself just one hour or one 1/2 day or even one whole day to really get into it sometimes and really feel what it feels like and know that's ok, the trick I play with myself is not to stay there long or too many day's. I just don't think it's worth my time or my energy. You see I litterly have to weigh and messure what I spend my energy on these days having so much fatigue I don't want to wast valuable energy. :0)
I'd rather do so many other things with my time (since it's limited now) I'd rather like to have fun or some add something to add joy. Infact I have a list of fun things I want to do that are little things. So when I have time I don't have to think, just do! :0) Glad my exsperiance could help. See, that's what I'm talking about! :0) Thank you!!! :0)
rose said:
WOW...such positive thoughts Jeannie! I just opened up my pc, went to this site and read what you wrote. Actually you helped immensely, as the past few days have been very challenging for me with my ataxia and I was having a mini-pity party. After reading your comments I am going to try to look at my ataxia in a different light. I'm usually a positive person and truly know I'm blessed! Thank you for making helping me remember that, even with all the challenges of ataxia!
Pilaties sure has helped me out a lot more than I thought it even could! The teacher even has remarked how much more balanced I've gotten frp, where I started just a few months ago. I really didn't think it could help, but tried it anyway (modified). Strengthing, strengthing my core and streching my legs. I also do some every few hours throught my day (not as streniuous (sp?). I am finding it has helped me along with eating as much raw foods as I can for energy. Eliminating refined sugars, alcohol, additives preservitives (Organic's) anything in a box or bag etc. Making sure I have the proper amount of sleep is critical.
Physicially, Mentally & Spirtuallly balanced helps over all. They all work together for me. For days when I have more stiffness I use Arnica Gel and strech out the pain/ache (it sounds funny to strech but over a few time it really works/helps me).
For me mentally is huge. When I found out that I could choose to feel a certain way or stop feeling a certain way, just having that permission helped me start my journey to health! Good luck on your journey too! We are all in this togeteher! :0)
My Balance has gotten so much better over time I bet thinking about yours and working at it even a little at a time will help. Youtube is helpful too! :0) .www.walkingwithataxia.com
I enjoy reading the advise. You all help me.
Yes we are all here to help each other. This is a good place to come when you are having a bad day or need to vent. This site is full of all kinds of people who know and understand what we are going threw, and how we feel. Some people have excepted they have Ataxia, and some people have not! Take care!
Were all here! Lori