Ive had undiagnosed progressive cerebeller ataxia for six years now. I’ve be to therapy six different places,or,pt,st,also did a lot of blood and genetic testing and tried about 30 differ medal and seen every kind of specialist. Still no results, ivetryed cane,walkers and no improvements. I’m just tired and don’t know what to do. Almost at the give up point.
Ataxia is incurable, progresses at whatever rate it wants and has whatever symptoms it wants to give you. All around just frustrating. We are here for support, but ataxia is not going to go away and it might improve with PT, OT and exercise.
The PT's you've gone to, do they specialize in neuro conditions or orthopedic. I would make sure it is neuro. They have definitely helped me with walking, how I should stand and move (balance myself). I also go to occupational therapy and they have helped with my hands and eyes.
Kay is right about Ataxia. Going to PT for exercises may make you feel better that you are doing something, but there is no cure. I kept hoping my symptoms would not progress, but they are. Life is getting more difficult. I can use a cane or a rolling walker, but it is still hard to walk or do anything. Sadly,everything I do takes so much energy and caution! But don't give up though. Try to recognize what you can still do and enjoy. Do PT for whatever it can do to help. Hopefully you have a friend or a family member who functions as a good listener because we all need to say what's in our minds.
Where do you live? I go to Mass. General in Boston, MA and see a Movement Specialist. I have Cerebellum Ataxia caused by MSA. I can relate to your story. I went to many, many different doctors before I got a diagnosis and have had symptoms for 10 years. Now I finally have answers. I am hoping for clinical trials or a healing miracle. Don't give up! There is so much new research, especially with stem cells.
Hi there,
When you are at the "give up" point, or even before that, just sit or lie down and rest. ( I mean you did write this...) You will feel better. Admittedly, I have no neck or head tremors or pain but plenty of imbalance and stiffness. No exercise has changed this. But resting is impt too. Neither dr.s nor PT''s can really help much. Sadly,, this is the truth.
Really, there is??
Debora Warner said:
Where do you live? I go to Mass. General in Boston, MA and see a Movement Specialist. I have Cerebellum Ataxia caused by MSA. I can relate to your story. I went to many, many different doctors before I got a diagnosis and have had symptoms for 10 years. Now I finally have answers. I am hoping for clinical trials or a healing miracle. Don't give up! There is so much new research, especially with stem cells.
I have progressive C/A and it is a hard slog.. We as a group must remain strong and positive, we all know the negative side but look for the positive. I use a motivational speech by Reg Vardy, its on the net. .We can still enjoy life, however we feel. A hobby of any kind whatever you are able to do is a positive step. I think I am right in saying that we can still use our brains and must use our bodies as much as we are able. .You seem to be able to use a compute, not everyone has the ability to do that, the web opens all sorts of doors.. We are a global community here to support each other. .WE MUST REMAIN POSITIVE. Peter Derbyshire England.
I was diagnosed with SCA almost 3 years ago. My Neurologist is a Parkinson's Specialist who has been a life saver. Although there is no cure, the PT that I receive is specific to my issues (balance, walking with a gait, stiffness). My husband and I had already talked with a contractor about "handicapping" one of our bathrooms because I was so unbalanced in the shower with only one small bar installed. The therapist said 80% of balance is based on your sight. I now do a series of balance exercises with my eyes closed (standing in place, within reach of a wall or counter). I replaced our shower curtain with a clear one which lets in more light and I put a washcloth on the floor of the shower, to stand on, that provides a "center of gravity" to ground me. These little changes have given me so much confidence that, even though there is no pill or operation that is going to make me better, I feel almost normal and safer living with Ataxia!
Give up on WHAT Carlous? Life..well you can't. It's a GIFT. And about cane, walkers giving no improvements, well how can they. They are ONLY aids. I am an ataxian for 13 years now, in the mean time having a sitting-down life as we speak and there's still lots out there to enjoy. It also took me some years to get there where I am now. Donot focus on hope for a cure, a waste of time and energy. Focus on the things you still CAN DO and not on the ones you can't, which will only sadden you. Feeling depressed, yes I also had my share. But I'm up till a point now where I am grateful. Grateful for the strength in my mind. Grateful for me having this and not my loved ones. Now that would have been an ordeal for me. The body is the house that you live in Carlous, it's not WHO you are. So try to find things you enjoy. Not a reader, then discover how much joy books can bring you. I love reading, writing (on the pc keyboard that is, manual writing not an option anymore), doing the crypto puzzles, playing bridge on line. Your computer offers you a whole world on its own. So keep your head up high. Don't let this thing get to you. You are your own boss, right. Stay that way!
Take care, hugs from Holland, Elle.
neta said:
yes, there is a specialty for us and neurologists can now grow brain cells from skin tissue!
Really, there is??
Debora Warner said:Where do you live? I go to Mass. General in Boston, MA and see a Movement Specialist. I have Cerebellum Ataxia caused by MSA. I can relate to your story. I went to many, many different doctors before I got a diagnosis and have had symptoms for 10 years. Now I finally have answers. I am hoping for clinical trials or a healing miracle. Don't give up! There is so much new research, especially with stem cells.
I think the important part is when you are at home in an area you are comfortable in and know do all your walking and moveing around without a walker or crutches for as long as you can. I know it looks bad when out of the house if you are trying to walk right it is not going to happen so save your energy for at home and thats where you get your physical therapy. Jerry
They can? Where is this happening? Is this really happening?
Debora Warner said:
neta said:yes, there is a specialty for us and neurologists can now grow brain cells from skin tissue!
Really, there is??
Debora Warner said:Where do you live? I go to Mass. General in Boston, MA and see a Movement Specialist. I have Cerebellum Ataxia caused by MSA. I can relate to your story. I went to many, many different doctors before I got a diagnosis and have had symptoms for 10 years. Now I finally have answers. I am hoping for clinical trials or a healing miracle. Don't give up! There is so much new research, especially with stem cells.
I have been rather disgusted, but I am more relaxed now. I really feel that I have improved somewhat. But I can't be specific. I do a lot of walk/run with cane or rollator, take extra thyroid pills, many vitamins& minerals, and basically no processed wheat or sugar, virtually no red meat (almost vegan) in limited amounts. My downfall is 2-3 scotches at night. The neuro. doesn't like it. but you can't quit everything without some promise which no one will give, ----Slky
Dear Carious Bobo, I'm in the same boat as you, as I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7) eleven years ago. It has progressed. In the past, I've done physical therapy and aquatic therapy. Currently, I go to a wellness center to use weight machines, as I want to keep my muscles as strong as possible! At home, I do exercises for strength and balance, as well as different stretches (stretching daily helps my stiffnes). My neurologist has always told me to stay as active as I can (easy for him to say...,ha!). I also go for pleasure walks with my Access Actiove Rollator. I use a quad-cane when I leave my home, as it helps me with stability. I also try to eat as healthy as possible (nothing processed). I try to keep a positive attitude and relish the things I can still do, rather then focus on what I can no longer do. Do the best you can and please don't give up, as you're NOT alone in your journey..., ;o)
try to use ayurveda treatment.
I went to Thailand to make treatment with Stenio cell but unfotunately it gave wrong.I 'm a brazilian boy and I have mjd ataxia3.
Mauro
Ataxia? No cure BUT research is proving to be valuable as more and more types of ataxia are being discovered. I have accepted ataxia (along with myriad mystical maladies) as part of my life and fortunately I have a good sense of humor. Unless I'm hurt I can laugh at my falling. Let's face it. Seeing someone fall DOES look funny and old movies prove that. What I do to help my situation, well, it depends if I have a good attitude or a baditude. Baditude adjustmens become necessary and I my cry, talk to myself, see my shrink, read a good book on my Kindle, call a friend (my husband of almost 55 years is a dream come true), write...write anything and all sorts of other things. I must admit that one of the best treatments for my baditude is to GO SHOPPING! SINGcerely, Gramma Karen
You did not mention medication! I have been fortunate in tolerarating meds without side effefcts. Therapy may be helpful, but I was able to continue working for 12 years because of sinemet, gabapentin and then also azilect. Sinemet (carbo/levodopa) is the Parkinson's miracle drug. I took 1 tablet twice a dayat first and was maintaining a pretty normal life. Now, 12 years later, I take 1 and a half every 3 hours, but can still walk around home without a cane most of the time. Gabapentin helped with neuropathy ( painful twitch in my leg). Azilect kept the annoying tremors at bay for a long tme. I wanted quality of life, as much as possible, and for as long as possible! I should read your profile-I just joined today.
Dear Sharon#3sca, A HUGE welcome to this site! Sounds like you've had great luck with medications...,kudos!..., ;o)
Thank you rose! Yes,medication has kept me on my feet :-) I just gave up working Oct. 31 ; just too much for me to keep it up. So now, as expected, there is more to deal with. But I had those 12 years! :-) and I wouldn't change anything. It has been prettty darn good, all things considered
rose said:
Dear Sharon#3sca, A HUGE welcome to this site! Sounds like you've had great luck with medications...,kudos!..., ;o)