from last week. I speak with Dragon software, so there is a grammatical error, please ignore.
I just want to throw at question out there
send someone in South Africa just posted this morning regarding a wheelchair.
Does everyone who is had ataxia a while end up in a wheelchair ?
I was diagnosed with spino cerebellar ataxia about 2 1/2 years ago . my walking is terrible unless I have my husband's arm or the shopping cart at the store .. My one fear is that I will eventually need a wheelchair .. Our two-story house is for sale because of the stairs. when I asked my doctor this same question , she said she didn't know. Also, I have another question. has anyone had leg pain for like 40 years for no explainable reason ?
Have you tried a walker or rollator? It will give you the support you need to walk. I am just having leg pain. It really helps to stretch your legs particulary, feet, ankles, and calf muscles. Avoid the chair as long as you can.Here is the link for rollator
Hi Michelle, I had leg pain for about 8 years before my other symptoms showed up. I now have leg pain that keeps me awake at night. If anyone can suggest medications for this I would appreciate the information as my doctors have not found anything that works. Have you tried a cane Michelle? I find it very helpful. Good Luck.
I dont know if everyone ends up in the wheelchair but even if you dont need it all the time it does give you some rest and it lets you move faster when you need to go to the bathroom right now or if your answering the door or if your at the store shopping and you need to get to the opposite corner of the store to use their bathroom. You dont need to use all the time unless you get to that part of your ataxia. Jerry Linda have you thought about or tried cannabis for sleep. An edible just an hour before bed lets me get a good nites sleep.
My dr. said my cerebellar ataxia was progressive. I learned people end up in wheelchairs online. I am praying that is not my fate. I can still "wall walk" around the house. Thank God for shopping carts! I have a Rollator and highly recommend your getting one. I don't use it consistently, just when I feel it might be a good help that day. Pitching it in and out of my car is not too bad. It was a good help getting around the Mall. Yes, I still drive, and still feel I am driving safely despite my altered perceptions.'
Glad you are seeking a house where you don't need to navigate stairs. I can live on one floor of my house when I absolutely need to do that.
Leg pain happens about every two weeks. Sometimes I can't sleep more than an hour or so before waking up with it. I get up and walk around, apply hot compresses, take Motrin or Advil, and hope for the best. I think it is neuropathic nerve pain. Do you have some neuropathy?
We didn't deserve this, but we can cope with it. Good luck!
The husband's arm, the shopping cart..it all sounds pretty familiar to long(er) time ataxians. My neurologist told me when diagnozed in 2004, we 'eventually' all end up in a wheelchair. So I knew it was coming, but just hushed it away at the time. No sense worrying about what 'could be' at 'whatever' time in the future. NOW, indoors I don't need one yet. I use a 4-legged crutch or walls, furniture etc. which I can hold on to. I cope with the stairs by holding on to the bannister and which I try to see as a muscle trainer. I mostly always go to the toilet upstairs, just to keep my legs strong.
Outdoors it's the wheelchair since some 5 years now. But I also broke my hip at the time, which is not the greatest combination with ataxia. So who knows..maybe I would have started off later. I had trouble with it at first, but now I see it as a good aid to not be locked up in the house all the time. It's funny to feel small again though and always looking at bums and bellies:) Well anyway, it is what it is. So don't waste any energy on sad thoughts. Focus on the CAN DO's and stay strong. You are your own boss, right. Hugs from Holland, Elle.
thank you for the reply. Some of it made me even laugh. Don't worry, I'm not thinking bad thoughts, only good ones.
Michelle
Elle Strik said:
Hello Michelle
The husband's arm, the shopping cart..it all sounds very familiar to long(er) time ataxians. My neurologist told me when diagnozed in 2004, we 'eventually' all end up in a wheelchair. So I knew it was coming, but just hushed it away at the time. No sense worrying about what 'could be' at 'whatever' time in the future. NOW, indoors I don't need one yet. I use a 4-legged crutch or walls, furniture etc. which I can hold on to. I cope with the stairs by holding on to the bannister and which I try to see as a muscle trainer. I mostly always go to the toilet upstairs, just to keep my legs strong.
Outdoors it's the wheelchair since some 5 years now. But I also broke my hip at the time, which is not the greatest combination with ataxia. So who knows..maybe I would have started off later. I had trouble with it at first, but now I see it as a good aid to not be locked up in the house all the time. It's funny to feel small again though and always looking at bums and bellies:) Well anyway, it is what it is. So don't waste any energy on bad thoughts. Focus on the CAN DO's and stay strong. You are your own boss, right. Hugs from Holland, Elle.
thank you for responding. Frankly, I think my doctor said she didn't know because I looked fragile. On the contrary, I am not fragile and all. I just want to know what to expect.
No, no Neuropathy.
Michelle
Umigal said:
My dr. said my cerebellar ataxia was progressive. I learned people end up in wheelchairs online. I am praying that is not my fate. I can still "wall walk" around the house. Thank God for shopping carts! I have a Rollator and highly recommend your getting one. I don't use it consistently, just when I feel it might be a good help that day. Pitching it in and out of my car is not too bad. It was a good help getting around the Mall. Yes, I still drive, and still feel I am driving safely despite my altered perceptions.'
Glad you are seeking a house where you don't need to navigate stairs. I can live on one floor of my house when I absolutely need to do that.
Leg pain happens about every two weeks. Sometimes I can't sleep more than an hour or so before waking up with it. I get up and walk around, apply hot compresses, take Motrin or Advil, and hope for the best. I think it is neuropathic nerve pain. Do you have some neuropathy?
We didn't deserve this, but we can cope with it. Good luck!
Deaer Michelle, First of all WELCOME!!! I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause/symptoms 24/7) eleven years ago, although looking back, I had extremely small symptoms starting about eight years before diagnosis. I'm now 61 years young. I started using a cane when I leave my home about five years ago (after a bad fall) and went to a quad-cane about two years ago (to give me more stability). My ataxia is progressing, although I'm still able to walk, very carefully, in my home without my cane. If need be, I just bounce off the walls and furnature...,ha! I bought (on-line thru Amazon) an Access Active Rollator (I LOVE it!) to use for pleasure walking out doors. At this rate, I and my neurologist fiqure I won't need a wheelchair until I'm 80 years young, but who really knows? I exercise for strenth and balance, as I'm trying to keep my muscles as strong as possible. I also do stretches daily. My balance is so compromised, I must hold onto the back of a sturdy chair or the ledge between my kitchen and family room. Of course, doing exercises on the floor is ideal, as no chance of falling...,ha! As a rule, I don't suffer from any long term pain, although I have some neuropathy and arthritis in my hands/fingers, as well as arthritis in my joints elsewhere. My best to you..., ;o)
Do not fear a wheelchair! Obvioulsy you need access, wide doors; flat sills, no steps or stairs. You can get different wheelchairs, manual self propelled, transfer, shower etc I use mine without leg rests or arms & "walk" about, sort of pulling with my feet. I also use scooters, you will learn wich one you need, I have a super site in UK,they will post worldwise & are half the price! I have bought 4 over the years so can recommend them.
All ataxias are different, just do what you can & don't struggle;
Thank you for the good wishes Fiona. The cheap prices for the wheelchairs in the UK are probably made up for by shipping. Thank you for the welcome. Have a good weekend! We have a holiday weekend.
Michelle Fiona Elizabeth Bunce said:
Wellcome Michelle
welcome Michelle
Do not fear a wheelchair! Obvioulsy you need access, wide doors; flat sills, no steps or stairs. You can get different wheelchairs, manual self propelled, transfer, shower etc I use mine without leg rests or arms & "walk" about, sort of pulling with my feet. I also use scooters, you will learn wich one you need, I have a super site in UK,they will post worldwise & are half the price! I have bought 4 over the years so can recommend them.
All ataxias are different, just do what you can & don't struggle;
Thank you for the good wishes Fiona. The cheap prices for the wheelchairs in the UK are probably made up for by shipping. Thank you for the welcome. Have a good weekend! We have a holiday weekend.
Michelle Fiona Elizabeth Bunce said:
Wellcome Michelle
welcome Michelle
Do not fear a wheelchair! Obvioulsy you need access, wide doors; flat sills, no steps or stairs. You can get different wheelchairs, manual self propelled, transfer, shower etc I use mine without leg rests or arms & "walk" about, sort of pulling with my feet. I also use scooters, you will learn wich one you need, I have a super site in UK,they will post worldwise & are half the price! I have bought 4 over the years so can recommend them.
All ataxias are different, just do what you can & don't struggle;
Thank you for the welcome. Thank you for the encouraging words! I am 58 years young. I think I had some symptoms six or eight years before I was diagnosed. But feeling strange in the morning was not a strong enough symptom to go complaining to my PCP. He would have thought I was crazy. I actually thought I had cancer when I was diagnosed with ataxia. I have three opinions.
Anyway, I am an optimist. I am fighting this every step of the way. From nutrition, to exercise, to acupuncture and more....
Thanks again,
Michelle
rose said:
Deaer Michelle, First of all WELCOME!!! I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause/symptoms 24/7) eleven years ago, although looking back, I had extremely small symptoms starting about eight years before diagnosis. I'm now 61 years young. I started using a cane when I leave my home about five years ago (after a bad fall) and went to a quad-cane about two years ago (to give me more stability). My ataxia is progressing, although I'm still able to walk, very carefully, in my home without my cane. If need be, I just bounce off the walls and furnature...,ha! I bought (on-line thru Amazon) an Access Active Rollator (I LOVE it!) to use for pleasure walking out doors. At this rate, I and my neurologist fiqure I won't need a wheelchair until I'm 80 years young, but who really knows? I exercise for strenth and balance, as I'm trying to keep my muscles as strong as possible. I also do stretches daily. My balance is so compromised, I must hold onto the back of a sturdy chair or the ledge between my kitchen and family room. Of course, doing exercises on the floor is ideal, as no chance of falling...,ha! As a rule, I don't suffer from any long term pain, although I have some neuropathy and arthritis in my hands/fingers, as well as arthritis in my joints elsewhere. My best to you..., ;o)
I was talking about scooters, but they do wheelchairs too, the price includes delivery. I think I pay about £200 for delivery to europe, you can contact them for a quote,considering a scooter weighs up to 150 kilos and we live on an island halfway down France it is very reasonable! They have a huge choice, you can pay by paypal, all details ie weight, dimensions are on the site & they come quick. Now I have a light one for the boot of the car (hubbie has shoulder problems, a medium 1 for n the garden & shopping, and a powerful one for the road & long trips.
best wishes Fiona
Michelle said:
Thank you for the good wishes Fiona. The cheap prices for the wheelchairs in the UK are probably made up for by shipping. Thank you for the welcome. Have a good weekend! We have a holiday weekend.
Michelle Fiona Elizabeth Bunce said:
Wellcome Michelle
welcome Michelle
Do not fear a wheelchair! Obvioulsy you need access, wide doors; flat sills, no steps or stairs. You can get different wheelchairs, manual self propelled, transfer, shower etc I use mine without leg rests or arms & "walk" about, sort of pulling with my feet. I also use scooters, you will learn wich one you need, I have a super site in UK,they will post worldwise & are half the price! I have bought 4 over the years so can recommend them.
All ataxias are different, just do what you can & don't struggle;
I have had ataxia since high school and I'm now 49 and I'm still walking independently without any assistance. I just started PT and OT in January and I'm actually walking better.
Ataxia is incurable, progresses at whatever rate it wants to and gives you whatever symptoms it wants. Exercise seems to help but there is no "standard of treatment or standard of progression for ataxia".
thank you for your response. I realize ataxia is incurable of whatever rate it goes. You do what you feel what you have to do. I started therapy later in the year. It takes quite a while to get an appointment. I hope I have as good luck as you did.
I am 58 and was diagnosed about 2 1/2 years ago. As I think back on it. I think the ataxia started six or 8 years ago .
Michelle Kay said:
I have had ataxia since high school and I'm now 49 and I'm still walking independently without any assistance. I just started PT and OT in January and I'm actually walking better.
Ataxia is incurable, progresses at whatever rate it wants to and gives you whatever symptoms it wants. Exercise seems to help but there is no "standard of treatment or standard of progression for ataxia".
thank you for your reply and thank you for the link. I'm going to get a Walker. That way I'll have it when I need it.
Michelle
Ran said:
Have you tried a walker or rollator? It will give you the support you need to walk. I am just having leg pain. It really helps to stretch your legs particulary, feet, ankles, and calf muscles. Avoid the chair as long as you can.Here is the link for rollator
thank you for your reply and thank you for the link. I'm going to get a Walker. That way I'll have it when I need it.
Michelle
Ran said:
Have you tried a walker or rollator? It will give you the support you need to walk. I am just having leg pain. It really helps to stretch your legs particulary, feet, ankles, and calf muscles. Avoid the chair as long as you can.Here is the link for rollator
Michelle, I was diagnosed 5 years ago. I ignored the rololator for the first few months until theraphy folks sent one home with me and told me to use if for the weekend. Although I dont use it every day there are some times i take it with me. Excursions to a mall, church function, or exercise. I helps you in getting around and givers you a seat to rest on. So, dont leave it in the closet use it. Exercise is easier and falls are few. Use the one with 5 inch wheels as it gives you more flexibility. Don't buy the small aluminum one with small wheels on the front and no wheels on the rear. That is a broken hip waiting to happen. Hope I helped
I haven't tried either yet. I have a personal trainer twice a week. I only have a cane that I use when travel. I am too embarrassed use a walker or a wheelchair, although I know it would help me.
Michelle
Ran said:
Michelle said:
Hi Ran,
thank you for your reply and thank you for the link. I'm going to get a Walker. That way I'll have it when I need it.
Michelle
Ran said:
Have you tried a walker or rollator? It will give you the support you need to walk. I am just having leg pain. It really helps to stretch your legs particulary, feet, ankles, and calf muscles. Avoid the chair as long as you can.Here is the link for rollator
Michelle, I was diagnosed 5 years ago. I ignored the rololator for the first few months until theraphy folks sent one home with me and told me to use if for the weekend. Although I dont use it every day there are some times i take it with me. Excursions to a mall, church function, or exercise. I helps you in getting around and givers you a seat to rest on. So, dont leave it in the closet use it. Exercise is easier and falls are few. Use the one with 5 inch wheels as it gives you more flexibility. Don't buy the small aluminum one with small wheels on the front and no wheels on the rear. That is a broken hip waiting to happen. Hope I helped