Ataxia Support Network

I'll be honest


Although I’ve had this Ataxia crap for a long time, there are times when it gets to me more than I like. No! I’m not gonna do anything stupid! But there are times when I just want to cry because I’m sick of being sick. I just got back from a week’s vacation in Florida with my healthy friends. I have to admit that I’m jealous of their healthy state. When I see them getting around with no problems and I have to be 100% aware of my surroundings, it gets to me. There are times when I wish that I could temporarily transfer my health to them for about an hour each so they could experience what I cope with and then they would really understand. Don’t get me wrong, they are good friends but they can only know what they know. Is this bad thinking?



No, it’s not ‘bad’ thinking per se. The thing is, I wouldn’t wish this ataxia crap on my worst enemy, let alone on a friend (albeit temporarily) so they could understand better. I have a genetic form, so I’ve been dealing with it all my life. I’ve found there to be no gain in envy, jealousy or bitterness…they change nothing and add negativity and stress to my life, both of which can make matters worse for me.



not at all. I get it. People can’t really know unless they experience it themselves and yes, it’s frustrating to say the least. So no, youre not wrong at all.



I say the same thing. Usually when friends are complaining about how hard times are, how tough they have it, working sucks, etc. I tell them to walk a mile in my shoes (if they can). If working sucks, just imagine you can’t anymore. Sometimes I can’t help but think folks take for granted some things in life that should come naturally. I don’t have a mean bone in my body, but don’t tell me how tough life is.:slightly_smiling_face:
The feelings you share are common for us all Chas.



Chas, I don’t have Ataxia (I’ve been gifted with another condition, similarly entertaining … NOT). I get it completely as well. Been there, felt that. And that’s the beauty of livingwithataxia.org, and the other Ben’s Friends communities. Here, we all get it!

Seenie from Moderator Support



I’m sure most people would agree, anybody who copes with challenging symptoms probably has had similar thoughts at one time or another, it’s only human nature :smirk:xB



No John, I wouldn’t wish this on anyone either. I hope there’s a real cure on the horizon. It’s just that my friends “think” they know what I’m going through but in reality they don’t. I have never blamed them or anyone but I’ve had this thing since I was 21 [now almost 72] and I do get tired of it and coping. Like I said above, tired, yes, but not going to do something stupid because it is what it is.

Short story. When I was growing up I was gifted with talent at sports. Playing sports helped me through some difficult family issues. In fact, I was looking forward to a possible professional career in baseball. But that ability was taken from me just as I reached adult life.

I was misdiagnosed with MS by a barbaric test called a pneumoencepholgram [spelling?] before the MRI came into existence. Then after the MRI, it was seen that my cerebellum was shrinking. And that brings me to today. So to reply to your post, I do not want anyone to get health problems at all. Plain life is tough enough as it is.



I really believe their are no “bad” thoughts because we feel what we feel. All of our feelings are O.K. I know what you mean about others not understanding. When we are judged or judge ourselves against standards of people without our physical problems we will almost always be the losers because it is just plain harder for us to do things. It just makes us human to wish that everything is not so hard. People without out physical problems could not relate to that, though we do wish that friends understood. I know I didn’t before. Also, I never appreciated adequately what I had. But we understand how special we are now and how special each other is, too.



I feel exactly like you. I want to be “normal” again. It’s doing my head in, surely there must be something they can do for us sufferers. I was so fit, but now i cannot even write my name. When people tell me what they are going to do or go I pretend I am happy for them but inside I am not, just jealous I guess. It’s a living hell, and I wonder why I am here at times. Just venting my anger! I am sorry. x

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One of the problems is terminology, which affects your mood and attitude. YOU ARE NOT SICK. You have a broken part which right now can not be fixed. You can be healthy despite ataxia. A healthy ataxian lives much better than a sick one…

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I’m going to agree with you
My own family has too me to stop feeling sorry for myself and playing the victim
I’d like them to experience just one hour



I have to agree with Jonas, mood and attitude can play a big part in how anyone copes with any challenging situation. Although, this must be hard to bear in mind if someone is also coping with the knock on effect that ataxia has on their body. We know that generally speaking everyone experiences most symptoms slightly differently, to a lesser or greater degree. Some are fairly mildly affected but it’s all relative. The basic similarities bond us together but it has to be said that not everyone is emotionally equipped to handle what is happening. It can be very hard😏xB

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I feel the same as that I’m 50 now and got ataxia cerebellar about 15 years ago found I couldn’t do the most simply things I got very depressed and still do.i go to the gym 3 times a week which does help. It also helps meeting other people some with other disabilities. Like you I sometimes wish certain people could experience this condition if only for a few hours just so they can understand the frustration.



That is correct Jonas. And a reminder that we have a “condition” vs. a disease or sickness. Different things. Although many illnesses may arise from having this condition.
It is however, often hard to overcome the “fog” and negative thinking that is sometimes associated with certain types of these conditions. That’s why it’s important to maintain as good physical health as possible. It has been proven that proper diet and exercise helps to maintain brain, and more specifically thought function.
I know first hand how hard and taxing this condition can be.I have suffered depression on several occasions. It is very difficult to watch others lead normal lives, and move about normally for sure.
Hang in there.



This was my introduction post:

I’m new here but I have been a regular contributor at the old NAF forum BB. Nevertheless, please let me introduce myself with a history of sorts. I am now 71 years old and I first noticed that something was wrong when I was 21. So, I have been dealing with this Ataxia [SCA] for over 50 years. I have never been interested in what type that I have so never did any genetic tests but did have MRIs. I’m always interested regarding therapies and of course, cures as is everyone else here.

My symptoms include but not limited to are balance problems, gait, nystagmus, coordination, dysarthia, urinary frequency as if I had BPH [I don’t have BPH] and dry skin. I am still ambulatory with full use of my arms and legs. I attribute that last part to the fact that I exercise almost every day and I have been doing that for years. Being as active as you can is imperative for our illness. Not only does it help with your body but it also helps keep depression at bay.

I belong to LA Fitness which is a gym for those who don’t know. In my gym are some members who come in with walkers and even wheelchairs. There is equipment for all people. Plus all the “healthy” members are very willing to help those who need help so you have NO excuses for being sedentary. Plus, there are exercises online for folks in wheelchairs,

I was given great advice years ago from another patient. Either you can let the illness overwhelm you or you can continually try to overwhelm it. I chose the latter and so should you.

As NIKE used to say “Just do it!”

FYI, I go to my gym 3-4 times a week and spend about 2 hours each time. I have ALWAYS been an active person because that’s the way I grew up. My association with athletics just made me that way. That’s why this Ataxia thing has hurt me so much. Whether you choose the word sickness or condition doesn’t mean that much to me. Again, it is what it is! I could think of other 4-letter words to call it but this is a family place. LOL.



Very well said Chas!



I totally understand how you feel. I am 75 years old and still able to walk with aids. I live healthily as reasonably possible and dont think I would still be mobile if I hadnt taken care of my health. I didnt know I had cerebellar ataxia [of no known cause] until my diagnosis in my late 50’s. Now that I am older, people expect me to be less mobile but when I look at my friends of similar age, I know that I would be very active and able to dance and run. Yes, I wish friends and family could walk in my shoes for just an hour.



Well put. I’m 65 stuck in wheelchair and know what you mean. Even ‘Able’ people in the caring industry don’t know



:smirk: A couple of weeks ago I wrenched my ankle, and had a taste of what it must be like to completely lose mobility. It’s like inhabiting a different world :smirk: xB



It’s normal to think that. I wished my friends knew and felt how I feel. But I also thought “they’re not mind readers.” I wouldn’t know what they’re going through unless they told me. So i told them. I struggle with going up and down stairs. I don’t do well on bleachers. I can’t go up hills. Now they know, so they are helpful, accommodating and willing to work with me when vacationing or just hanging out. One friend remembers I don’t do well sitting on bar stools. She asked the host if they had other seats. So long story short. Just tell them.

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