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Ataxia Support Network

Daily Living with SCA ... Coping Skills


#1

Hi all. Well, this is my first post. I was diagnosed a year ago and all my neuro said was "just embrace it". What? That told me zero. Since then Ive learned to use a walker, rollater, power scooter and some basics but had little to no help on how or what I needed to do in order to live! I had to discover things on my own. So heres hoping we can share our experiences of what we go thru and help each other with coping skills weve learned. Especially for those of us who may be single or living alone.

Cheers.


#2

I am 72 now and still coping although I do have a very helpful husband.

My most unexpectedly useful item is my typist chair which I use at my dressing table.

I also use it to do my ironing. I resisted doing ironing from a sitting position for many years but now find it very comfortable. I gave up ironing for a while but now actually find is quite relaxing.


#3

You'll need support sooner or later! Home became too dangerous 4 ME,so I put myself into a nursing home and life is,shall I say,improved..A supportive family would be nice but sometimes Ataxia symptoms bemuse them, so I find solace at the nursing home.

Regards, Ozzy


#4

I was diagnosed in my 30's and now at 49 I'm still not using any assistive devices. I did just complete physical therapy. I would recommend this for all of us but make sure they work with neuro patients, not orthopedic. I went from January to June and I am walking better, I haven't fallen in about 2 months. I still trip but I haven't fallen. They have taught me what to do when I get off balance. Also I discovered that some of the things I was doing to protect myself was actually making the ataxia worse.

I also worked with an occupational therapist and while being evaluated we found out my eyes were being affected. I have been doing eye exercises and my eyes are almost back to normal. My eye doctor never picked this up.

You might want to check out: http://http://walkingwithataxia.com/index.html

Dr. Clouse was told to sit back and let this do whatever it wants also. He said no and has been working on how to walk. He has people that were in wheelchairs that are walking.

I would recommend the PT, to work on your core and OT to help with eyes, fine motor skills. Speech therapy if you're speech is affected and I would do whatever exercise overall that you can do (swimming, walking, yoga, pilates, weights, hiking). I found out that some of the trails are handicap accessible.

Lastly, I would say stay on this website. It's a great resource if you have a question, or just need to vent. More than likely someone has gone through what you are or they can advise you about what they do.

I'm a single mom of a 14 year old so being self-sufficient is very important. I don't have a significant other to depend on. I found the PT, OT were the most similar of what Dr. Clouse feels. The PT that works with neuro patients are there to make you as independent as possible. The PT's that work with orthopedic patients just want to give you walkers. canes, wheelchairs, etc without trying to improve your situation.


#5



Ozzy said:

You'll need support sooner or later! Home became too dangerous 4 ME,so I put myself into a nursing home and life is,shall I say,improved..A supportive family would be nice but sometimes Ataxia symptoms bemuse them, so I find solace at the nursing home.

Regards, Ozzy

Its sad to see that it had to come to that but good that it works for you. For me, it scares me to think of giving up my independance. I am on VA and medicare...what would that provide for as far as nursing homes go?


#6

I know that this is an old topic but I can’t tell you how important it is to exercise and to do as much as you can safely do. Seriously, please do it.


#7

The most important thing I had to learn is to always be aware of the risk of falling. Walk consciously and keep your mind on what you’re doing. For the rest, I like being close to the ground (no fall risk) and I do a lot of stuff sitting on the floor, like hoovering and mopping…


#8

I was given some advice by a doctor when walking. Look down as you walk so there are no surprises.