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Ataxia Support Network

I'm not doing so good


#22

Dolo – you have a new normal and your normal isn’t like “normal-normal” but that doesn’t mean it won’t work for you. You simply need to start building a life around yourself and what you can do. In the end it doesn’t matter what anyone else thinks or believes, you know what’s going on in your life.

I don’t have ataxia as a nuerological condition, I have had chronic, neuroligically complicated migraines that were officially diagnoised at 18 (I’m 48) now. Some of the side effects during a migraine include ataxia and some of the daily meds I take have caused mild ataxia in general. As an example, all of my dishes are Corelle (shatter proof) and all of my drinking glasses are plastic. Why? Because I drop everything. I had to ruin a full set of nice place settings by dropped them or misjudging where the shelf was before I gave it up and bought things that work with what’s actually happening in my life.

My big goal as a teen was to graduate from high school and go to England, to live and work illegally basically, try to get into university over there and so on and so forth. I had been there on an art history junket in high school and wanted to go back more than anything. By the time I graduated I was on daily migraine meds and having 10-15 migraine days a month. There was no way I could go without access to immediate doctor care or medication so no European advernture for me. No living out of a backpack for a year and all that. So be it.

There’s an old saying that you have to play the hand you’re dealt. This is where you are right now, you’ve been dealt a less than ideal hand and now you have to play the game so you win on your terms.

It can be done! Don’t worry about what others think or feel or say about you and your condition. In fact, if you have friends who make you feel badly maybe it’s time to get rid of those friends. Harsh sounding, I know, but a true friend doesn’t make you feel badly. A true friend says “What do you need from me? How can I help you?” Those are the people you want in your life.

You can do this. You simply have to do everything you can to stop comparing yourself to others, stop concerning yourself with expectations of others, work on yourself, for yourself.

azurelle


#23

I think this is a natural reaction. I feel perfectly normal so why am I disabled? If I ignore the lack of balance and agility surely it will go away. What brings me back to reality are the accompanying features of Ataxia which vary widely. I know when I flex my feet when my shoes are off the soles of my feet feel somewhat stiff. I also have hammer toes. Neither of these things would be remarkable in themselves if they were not associated with ataxia so I have to accept the verdict. On the plus side I have found that regular exercise helps to mitigate the effect and the progression of Ataxia


#24

I have a pretty lonely existence that friend I had became a text only friend we haven’t seen each other going on 3 years now. That was the last friend. And I have macular degeneration on top of the ataxia. So I know what it’s like to drop things and to be on medication and having to rely heavy on doctors. Life has given me a horrible hand. Looks like I have a pair of 2s maybe a joker. I’m just tired of playing the game.


#25

I am sorry to hear about the macular degeneration in addition to the ataxia.

Socialization is important. I have been lucky in that my ataxia to all outwards purposes is a balance problem. And, yes, people don’t understand this illness. My friends cannot completely comprehend it. Because I am not otherwise restricted (except that I cannot walk any distance without using a rollator) which I find really frustrating. My friends make allowances which have enabled me to continue playing golf because they help me up and down hills where my balance becomes really bad.

If you are able to join the “Y” you will find that they will be able to tailor an exercise programme that will most likely slow your ataxia and lessen the symptoms. You will also meet new friends some of whom will have similar challenges. I work out at the “Y” regularly and there are many people attending with varying degrees of medical and mobility issues. I am not keen on support groups (excepting this one) but that’s just me; you might find one in your area that will help you meet other individuals with challenges, exchange ideas and make friends.

You have been dealt a lousy hand; we both have. There is no history of this problem on either side of my family so I suppose my ataxia is recessive and perhaps just a bad combination of genes.

I wish you well and hope that your life will improve.


#26

dolo23, don’t despair, just be honest with yourself and others…They CANNOT UNDERSTAND, never went through anything similar, but IF TRUE FRIENDS, will feel NOT PUSHED AWAY and will UNDERSTAND…I was NOT 100% SINCE BEING BORN, so in a way used to…dealing and climbing the mountain had to readjust my eating habits, allergies, skin probs, but really hidden, masking ataxia…used to it. mORE DIFFICULT for those relatively healthy and only NOT OK AS ADULTS. Just look for coping mechanism…If it is religion, follow it…I am NOT personally religious, but ANYTHING GOES, mainly avoid PEOPLE WHO STARE or are being a burden…


#27

This condition is indeed hard to live with, regardless of the type of Ataxia diagnosis you have. If I am depressed, I go to the beach to hangout with 3 legged dogs. Yeah they are slower and clumsy too,
but so joyful. So I arrive at the beach depressed and then 3 legged dogs teach me invaluable lessons. Your friends advice is BS (my opinion) but your emotional response to your condition can be improved.


#28

Critical theory says that there is nothing wrong with us and the problem is just society’s response to us. That makes a lot of sense. After all, things like buffets,which I have a problem with, are social responses to the walking ability that many people have, I find it helps to look at it that way.


#29

Dolo,

I read this thread again and took note of your comments about being constantly sad, and being tired of all this. It sounded like you may be suicidal. If you are, please remember the old adage about suicide being a permanent solution to a temporary problem. I am not saying that the physical problems are temporary, but feeling so miserable is. If you are considering that, please call a hot line or go to an ER. In any case, be sure to tell your doctor how you are feeling. It should not be necessary to feel so miserable.


#30

Maybe i am. I just havent gotten used to my situation yet. I need help with that. I had my life pretty much mapped out. This dosease was random. But looking back at my life I always knew something was wrong…im just frustrated. I haven’t had a win in a long time.


#31

Dolo,

I totally understand what you are feeling. I have done the same thing. I have drifted from my old friends because I’m embarrassed for them to see me now and I don’t want pity. It’s hard to make new friends if you can’t speak well. I too have vision problems. I can’t go anywhere alone. I can’t drive and I have no balance. Fortunately I have a great husband. He does what he can for me, but sometimes has to leave me alone.

I got lonely so I got a small dog. About 6 pounds. I can’t get outside with her so she uses pee pads. She doesn’t judge me. If she can’t understand she twists her head and keeps trying. If I fall she stays with me until I get up. She has helped a lot.

When I first started having symptoms I thought I was imagining it. My older brother also has ataxia. I thought it was like when someone vomits and you get sick too. I can look back and see problems my whole life. I was diagnosed at 52. I’m 59 now.

My point is to not let anyone tell you what to feel or how to do things. You have to do what works for you. I highly recommend a pet for companionship. Sometimes animals are more intuned than people. Check into a service animal.

Knowing there are some worse than than me doesn’t help. That’s
Like saying that because it’s below 0 up north that 40 degrees in Florida isn’t cold. It is.

Hang in and if you aren’t on antidepressants consider them. They helped me a lot.

Dee


#32

Please read the thread ‘Things that make you laugh’ in General…


#33

While friends can sympathize they can never truly understand anything that they cannot experience. I am lucky enough, except for my gait and balance, to have none of the other outward signs of ataxia. You are right about the emotional response to ataxia and while I occasionally get pissed off that I have this damned thing I don’t dwell on it and certainly when I see other people with handicaps, many worse than mine, I can only feel grateful.


#34

Of course you are right; fortunately I have never given a damn about anyone’s opinion (except in matters where I realize I am wrong). I am quite happy to explain to anyone who asks about my problem to use it as an opportunity to educate them.


#35

Hey Dolo,
Coming to terms with any ‘invisible illness’ is a must. You say you “…havent gotten used to my situation yet…” when you do please tell me how. I have days of such clarity, nothing is an obstacle, but then I have days when I simply want the world to go away and leave me the hell alone. We have to go through a grieving process. For me, I had plans, life plans. I had a career path. I’ve now lost all of that. So what’s left? ahhh What a mess. Coming to terms with the loss has been one of the biggest battles. I’ve had numerous surgeries and although (according to the dr’s) that has ‘fixed’ the issue, it has only ‘fixed’ the physical issue. I say ‘fixed’ but I can think of another word starting with ‘F’.
The psychological issue is a different story altogether and as for frustration… …ohh don’t go there… …the frustration is monolithic. Frustration with self, frustration with the medical fraternity, frustration with family/friends, frustration with… I could go on but you get the idea.
Just know that you are not alone with your battles as many/most of the members here have had those same battles and those who haven’t are so very lucky. I personally wouldn’t wish this on my worst enemy, well, ok so maybe I would, but they never seem to have such battles. Damn it. lol

Merl from the Moderator Support Team


#36

Couldn’t have put it better, my mood can be up and down like a yo-yo :wink: The amount of time I waste trying to make sense of my situation…you’d think after almost 25yrs I’d give it a rest :wink: I go with the flow, do what it takes and hope I can ‘bite my tongue’ when appropriate :wink:xB


#37

:thinking: Do you have access to a local Ataxia Support Group? I know there’s a contact in Port St Lucie, just up the turnpike from you. It might help considerably just to be able to relax and open up to others, face to face. I was at my local group last Friday, some members were really frustrated with pent up feelings, and really let it rip. You need to let go of some tension, and try to focus on something outside yourself. I can sense you rolling your eyes :wink: I know from my own experience how difficult motivation can be when you have eye problems. Eye problems have challenged me virtually since the onset. Combined with worsening balance, poor perception of depth, on and off slurring, choking, poor mental focus etc etc … life is just peachy :wink: Maybe someone could drive you to a Support Group meeting, you say you have siblings :thinking: Failing that, why not ring the contact, I’ve often had people contact me if they can’t actually get to the group :slightly_smiling_face: And, there are other groups in Florida :slightly_smiling_face: xB


#38

“…hope I can ‘bite my tongue’ when appropriate…” LOL LOL LOL
Beryl, I have another (self diagnosed) disorder. I call it my ‘Foot ‘IN’ Mouth’ disease. Some times I open my mouth and shove my foot so far in I could kick myself in the backside. I tend NOT to bite my tongue, when I should. Then say the wrong thing at the wrong time, offend people without even trying. I often think “Jeez, can you imagine how bad it would be if I’d tried to be offensive”. I actually need to take the time to think of what I’m going to say because if I say the first thing that comes to mind it’s usually full of expletives or is interpreted as offensive. I have a tendency to “call a spade a spade and a shovel a shovel”, to be more inclusive some people would rather I call them digging implements, but rewording my words takes to much energy for me. If someone’s being an idiot I tend to tell them, but some would say ‘they need to alter their behaviour’ not me. I tell them straight “You’re an idiot” then have to deal with the consequences of it, usually blowback and I end up getting covered in excrement.
Merl


#39

Dolo,

I know what you mean. I have been struggling with this for 8 years now. I think I should have some insight into something, but I really don’t. I like the suggestion about finding a local ataxia support group. Even if you have trouble getting to meetings, having someone who understands to talk to on the phone is helpful. I also found antidepressants helpful. The good news is that often depression goes away on its own. That and coming up with a new life plan given your different set of abilities. I know it took me a long time to mourn the loss of my previous life plan. I have a new plan, but I have not done anything to implement it. I let all sorts of really little things be barriers.

I am rambling badly here, but I wish you well.


#40

Support groups are a good idea i have a couple I use online. I dont do too good with people though. I should probably work on that. But I still get embarrassed when my speech gait and vision get worse in public places.


#41

Well I hope so it feels like I have been depressed for a long time. Years and years. It almost feels like its part of my character now.