Quantcast

Ataxia Support Network

Not an invalid

#1

I am 49 and recently diagnosed CSA after blood test, MRI and some reactionary test. Like most I began losing my balance and my speech began to sound as if I was drunk and it was very slow. I have stopped driving due to concentration and judgement. The problem I have now is that I am very secluded and “protected” from doing any projects @ home or chores. My idea of relaxation is to see something accomplished and know that I did it. I like to garden and work in the yard. To do things now, and when I’m more able helps me feel more useful and needed and not just a paycheck. I of course have days and times when I do not have the energy or want to do anything, and I know this when I feel it and I stop. I still work fulltime I do use a cane to help w/ balance and walking. I become depressed when I want to do these “projects” and I do ask for help and nothing happens and I am left to sit in my chair.

3 Likes

#2

If I could give any advice, it would be to do what you can safely do and just get out there. I think that dwelling and depression occur most frequently because the individual “hides out.” I realize that this is simplistic but the other choice is not really a choice. Believe me, all of us here do sympathize with your life. It sounds like you’re really trying so that’s a good thing. All you can do is ask for help when you need it. You’re definitely an important person so just do it. Best of luck.

3 Likes

#3

I’m 45, and was diagnosed with CSA back in 1997. I haven’t worked since 2003, and my progression started earlier and has been slow and gradual in comparison. However, I can understand where you’re coming from. Unfortunately, that’s a feeling I’ve gotten used to and come to accept. Luckily, my life is surrounded by people (especially my wife) who constantly remind me of how unimportant, in the long run, stuff like that actually is. A good physical and emotional support network becomes more imperative as we progress.

2 Likes

#4

:slightly_smiling_face: It must give a great feeling of selfworth still being able to hold down a job fulltime, and that is so important. I can understand your resentment of being ‘mollycoddled’ at home. I still want (and expect) to be able to attack the garden like I used to, but I’ve come realise what is safe to do, and what causes fatique to set in. My Husband understands this, and he will comment when I tend to press on regardless. On the one hand, I don’t want to be regarded as an invalid, but I do appreciate someone caring enough to look after my best interests. :slightly_smiling_face: xB

3 Likes

#5

I TOTALLY get where you are coming from! I have completely identified with my capacity as who I am. It has been very hard to shift into some other value for my existence. I always enjoyed hard work like moving the lawn, raking, building a rock wall, building bins for driveway sand, shoveling the driveway, etc. I have always loved it and my husband doesn’t love it so it was originally a great arrangement! Now, he has to do more and I feel upset because I can’t be out there with him and my son, sweating right along side them.

I don’t have any advice. I just try to do as much as I’m able to do and I’m working on letting go when I can’t. Sometimes it helps just to be outside lying down nearby those who are working.

0 Likes

#6

I’ve had SCA for about 19 years and have lived alone (with roommates) the whole time. I fall. I’ve only seriously fallen once. Lots of sprains and bruses. At one point I knew I would spend the rest of my life watching TV if I didn’t force myself to get up and do stuff. I travel alone, still drive safely, patio garden, grow orchids, and now oil paint. I do as much as I can. Physical therapy has helped with many things. I use all the latest technology (apple watch is the best fall button), and when I couldn’t drive (broken arm), used Uber. Right now swimming and treadmill are helping my stamina a lot. I feel like I’m fighting aging more than SCA. I started at age 50. Things have gotten better as I’ve become determined to keep moving. 10-15 minutes, then rest, then up again. This seems to work for me. If I need a nap I take it, but most days no longer need one. Swimming for me is number One. Good luck, you aren’t alone.

1 Like

#7

I dont have any advice either unfortunately, just wanted to say I know how you feel. I find it is different from day to day … sometimes I need to blame someone and sometimes I just shake it off. It’s good to talk. x

0 Likes