Hi I hope everybody is doing well...
I am fairly new to sca 1 and not as experienced. I am only 18 years of age and I have her ataxia since I was 12. I am afraid of what might happen next... I already can't walk or talk properly. I feel sleepy throughout the day, I feel week all the time what's next? I'm ready but how much harder is it actually going to get? I am thinking a about alot and I'm hoping it would make things easier.
here's the problem: no one can predict how your ataxia will progress. i'm sorry to say that. I have always been a very orderly person reliant on routines. I do not like change and I definitely don't like being out of control. I love red wine, but I never drank much more than a glass at a time because I don't like to lose control. so not knowing how i'm going to be in five years is maddening. i'm (relatively, lol) young & I have no idea what i'll be able to physically do in five years! it's terrifying.
I know it's not much, but here's what I do. I take care of my health. I quit smoking, I figured out which foods i'm allergic to and cut them out, I get my five a day, I do physio, I rest, I take my medication as prescribed. I also make sure I have fun even though i'm mostly homebound. I read when I can, I binge watch good shows, I jam to music, I spend time with my pets, I call people I like 
I also check in here because the support and wisdom I receive help me fight.
I do my best not to focus on the uncertainty because if I do, I panic. periodically I allow myself to freak out, cry & rage because that's healthy, too. then I get back to my life.
stay strong.
Thank you for your advice and your time I really appreciate it! I will definetely try your route of living life but I'm just not prepared for things to get worser. I feel like just ending my life and not dealing with the pain but I think about my loved ones alot when I do try. I do all I can to improve my situation but it constantly changes.
A few months, I could somewhat run but now I can't. My progress is getting worse everyday my bones are getting weaker I can't go around places... They come to my house when I need them.
Hey, I'm Lucy... I've recently been diagnosed with SCA2 I'm a mother to a wild 7 year old, I'm a social worker to trade. I completey empathise with what stage you're at... It's one thing for other people including sufferers to say there's plenty worse off and just do this.. Do that. The advice from fellow sufferers is so comforting but you'll need to come to terms with your fear and your reality in your own time. If you ever need to talk I'm here.
Lucy
Hi,
It is fantastic news that you have a diagnosis! It is impossible to find a cure for “ataxia “, but now that you know which type you have research it, research who is working on new treatments and get yourself onto clinical trials!
There are quite a few trials in the pipeline if not already happening for SCA1.
Get yourself onto any of those you or your neurologist think would suit you.
Make sure you have a very good neuro physio and speech and language therapists working with you.
Also, a good carer will help you get out and about and have a great social life so you don’t feel isolated or left out as well.
We are lucky that we are alive in this era as the genetic science progresses at a rapid pace.
They will be able to stop your illness (like they have done with Huntington’s) and once it is stopped from progressing you can then work on recovery of all your lost skills!
With stem cell treatment some neuron recovery can already be achieved as well, just imagine what they will be able to do in say 3-5 years!
For now make sure you do what you can for yourself!
Exercise, eat well, take supplements (sunvox has a brilliant post on this), FIGHT!
And in 10 years time you could be a healthy, able bodied young man!
Also, try to attend any ataxia/rare disease conferences or workshops available, they are a fountain of information!
Also, there are various drugs available to help with ataxic symptom management (this is an American list, however most of these drugs are widely available):
secureservercdn.net/166.62....
Good luck!
Thank you for your help! I am hoping someday I do feel better i don't just have ataxia but alot of other mental illness such as: Anxiety, Depression and OCD. So if I do get a cure what about all my other illnesses. They have cures but for those illnesses and I still have them. For 5 years now but no doctor said shit.
You poor thing. It's a lot to cope with when you're so young but try to stay positive. Do you do any exercise or take any supplements? I try to exercise lots and it actually gives me energy. Have you seen a physio or a speech therapist? They might be able to help you a lot.
You have no idea how it is for me. I'm not as confident as most of you guys. You lived your lives already but I didn't i don't know why i should do all these things. I'm trying my hardest but I don't find motivation because my life is finished now. Thanks for your advise and support! I wish you the best.
There is a huge range of age groups here so I don’t think it’s fair to say everyone has lived their love. I’m only 30 and I have so much more to do. There are lots of things you can do to improve your ataxia, some of which are mentioned here. I was your age when I was diagnosed with cone dystrophy so I understand.
I'm talking more about my environment my family and relatives they are older than me. I am not referring to people on this site that would be wrong because I don't know anyone's story or life. I'm sorry if i offended you it was not my intention... I thank you for your response.
Not at all! Do look into exercise though (if you're not already doing it), it makes such a big difference!
your age is partially why I responded so quickly. I became ill when I was 14. looking back, I believe it was undiagnosed coeliac. it can wreak absolute havoc on the body. I had the general digestive issues, but I also had balance issues, extreme joint pain, paralysing cramps in my legs, irregular heartbeat with chest pain. I even went blind for a few hours twice! I went to so many doctors and no one could figure it out.
i'm tempted to believe living with undiagnosed coeliac is related to the illnesses I have today. at 25 I had to cut back my working hours when I developed what I now know to be dystonia that affects my face, neck, and torso. boy is it painful; apparently it is freaky to see. at the same time, my right leg began going numb and I started using a cane. I became completely disabled at 28 with transverse myelitis. since then I've developed ataxia.
my sister is a bit older than I. she travels, has a family, has a job. my friends have gone through and completed their degrees while I lay in my bed trying to breathe through the pain.
I can gimp walk into a room and my relatives start crying. it's incredibly lonely.
my mother had a coworker who was diagnosed with ms in her 50's and you know what I said? "at least she got to have a life first." my family members try to be supportive, but no one understands it. god, how enraged and brokenhearted I can feel just going to the grocery store. i'm in my motorised wheelchair and people nearly twice my age walk past me.
I mentioned my pets. I nearly didn't get my kitten because i'm disabled. was I being fair to him adopting him when I may be completely bed bound in his lifetime? I brought him home and you know what? he's a black cat who won't be euthanised. he knows where all of his meals are coming from and gives the best cuddles. I've also found toys he can play with on his own. if you're not allergic and don't have one already, I recommend getting a pet. there are studies proving that pets lower our blood pressure and help disabled people live a better quality of life than those without pets. since many of us spend most of our time at home, it's nice to have a companion who offers unconditional love. do you ever feel like you have to put a brave face on being ill and disabled? it's nice not to need to do that with our pets.
this is a very long reply, but I wanted to share more with you. yes, it feels as if your life is over. sometimes I think i'm just existing for no reason, then one of my cats will come curl up on me. (seriously, pets are amazing !) there's nothing wrong with mourning, it's healthy, but try to do something that makes you happy every day. it could be as simple as listening to your favourite song. I don't believe we're all here for a reason and I would never judge a suicide, but I would hope they would try to stick around. if you can get someone to come to your house for psychological therapy, that would be good. if not, some insurance companies cover online therapy. if nothing else, there are toll free lines you can call when you're feeling at your lowest.
I hope you keep us posted on your progress. stay strong.
Hey c2a2o2,
What SCA do you have? I totally agree with you. I'm 30, i have SCA2. I'm Lucy
Hey Lucycord123!
I have Sca7 which is similar to other types but it also affects my eyesight. But I still work full time and live a full life. Your job sounds really cool, so worthwhile!
Hi, your life is not finished. You have to adapt. I know it isn't easy but if you have a positive outlook on the situation you will be able to adjust. I've been to a couple of Ataxia conferences and seen children as young as 9 years old in wheelchairs. Don't give up.
I totally agree with you and understand your statement, but it is hard for me to adapt after living a normal life for more then 10 years. I'm slowly understanding this is my life.
Unfortunately we are all getting worse but try to focus on what you can still do and hope for a treatment soon - at least we are still here- sorry I cannot help more xx
I really wish having a good life. I know I won't live the same but I believe in myself that's why I'm not ending I believe there is a way we can all relieve our pain. Thanks for the feedback and constant support you have shown me!
Thank you for posting. Every time each one of us posts we all feel a little less alone. I'm so sorry you are experiencing symptoms so young but other users are correct: the difficulty with ataxia is unpredictability... Just try to live your best life 💕
Lucy
Thanks for your reply and your time and sorry for the late response. I try to live my life but things are never the same the progression of the disease is rapid I cant keep up 👌👏❤️🙏🙏💯.
What next when your consultant hasn't really got a clue what's going on?
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