Anyone else go through this?

General
1

hello, hope all are doing best as possible.

does any go through times when it feels like nothing is hgoing right? my health has caused a mud slide with family, friends, and feel unheard by my doctors. docs unwilling to test me or change anything until my movement disorder specialist sees me, appointment won't even get set until april, on waiting list.

sorting out whether over emotional from the stress and wear nd tear, or is this part of brain chemistry stuff. want to crawl into the bed covers and not come out.

input appreciated.

2

Hi go through bad times every day then I think there are worse than me and if I don’t get doing then my legs will stop working altogether and I will not get fed then I get up of my large arse and potter around the house doing thing it makes me feel good . My kids help f I am having a really bad day then I just sit and play on my pad . What I can do I do what I can’t I don’t stress over any more used to

3

I know how you feel, having had ataxia for a few years. All I can say is that it is not bad as it feels now. If you focus your mind, you can still do a lot of fun things. The brain cells not being used for controlling movement will be used for something else.

Best wishes,

Vasant

4

You sound a little depressed. Talk this over with your doctor, as there are medications that will help with these feelings.I take the anti-anxiety drug, Citalopram, at night and I think it helps. Definitely don't stay in bed so much. There are many things you can do to get your interest in life with ataxia somewhat more tolerable. Read a new book, feed the birds,, get a cat,, start following a new tv series, call old school friends,, ask a couple of friends in and tell them it is "potluck night", and to bring something. Find something that counts as exercise even if it is just stretching. Don't stress about the tests. If you have it, you have it. Knowing which type is not going to make much difference.

5

Im going through the exact same thing but my wife left. At a time I need someone to talk to it seems like there is noone that is why I joined this site to talk to someone. I dont have a choice but to go through this, I hope this helps.

6

Be positive, there are a lot of people worse than us, remember is the mind that we have problems with, be strong

7

Perplexed, it's like Umigal says what type of Ataxia you have is not important at this point, nor is the cause unless it is something that can be fixed--which I haven't heard of as of this time. Focus on arranging things so you can function day by day and find things to occupy your time that you can do. Exercise whatever way you can and try to think of ways you can help others. It is normal to grieve over the things we can't do anymore but try to be positive and do what you can. If it becomes necessary don't hesitate to take anti-depressants (under dr.care, of course) So far I have avoided this but the gray winter here has not helped. Did find that St. John's Wort is a natural supplement that enhances mood. (If you are into supplements, or not adverse to them.) When I realized that I would be home a lot and not be able to function to do a lot, I tried to find things I could do. Since then, I have found some simple tasks take longer than before and I don't have enough time most days to rest as needed, exercise, and get to all of my projects. Crazy!! True, most doctors and health care people have no experience with ataxia, but maybe you have a neurologist who specializes in ataxia. So far, I don't but my PCP is understanding and latest PT has some experience and different view of ataxia and balance exercises. I hate that today is end of his sessions.

Hope you feel better soon.

Sorry to hear of your situation,Marty!

8

Big hugs to all, sorry you are going through so much. One of the things I have done to combat my frustration with the doctors lackadaisical attitude is to let the doctors hear it not my husband. I am quite sure they (docs) hate it, but I have found the squeaky wheel does get oiled more (more appointments, more concern, more tests, added doctors). I am communicating by email and at first I got brushed off a lot, but that has improved. If you don’t have email write snail mail, it is less about what the doctor will or won’t do regarding your communication and more about directing your frustration to the correct person and not your spouse. Hope things improve…

9

Dear Perplexed, Some great advice has already been given by others! Ataxia is extremely frustrating and challenging for sure! I have ups and downs, as we all do, but try to focus on one day at a time. I also try to have a positive attitude, as even though I can't control having ataxia, I can control my attitude! It's not easy at times, but nothing worthwhile is easy..,ha! Also, if possible, find a good therapist to talk to. I did (early on, as I was diagnosed with ataxia 11 years ago), and they really helped me sort things out! Be as active as possible, just keep moving (safely, of course). And, find some things that you can do and enjoy! My best to you... ;o)

10

I think we all go through periods like this. I'm not belittling it, I'm just saying you can get through it. You have to force yourself to get up or out and do things, because nothing is going to change by itself.

11

Dear Perplexed, as others have said try not to worry to much about which type of ataxia you have. I was diagnosed in 2007 and for about 3 years beleived my neuro when she told me as far as she was concenerned I had sca 3. But in the latest round of blood tests sca 3 has comne up as negative but I obviousley have some form of ataxia, not knowing which type really makes no difference.

I take Citalopram to deal with anxiety/depression and find it really helps, it's very subtle but you do feel better for it. Just try to stay positive and as active as you can be.

All the best

12

Dear Perplexed,

You are right to get into bed. Rest up and try to feel more normal. Bed will help you.You are sad and grieving for your old life. Take drugs if you feel suicidal, weepy etc. I take "zoloft'" I assume that any sudden medical condition fills the receiver w anxiety and sadness and panic. My kids and spouse are not too sympathetic or interested bec. I try (work hard) to appear normal and "business as usual." I havent leaned on friends majorly. Not sure why I protect everyone, In health, N

13

When told something by someone I trust, and I mistakenly believe it/accept it as fact, I feel kind of vulnerable; and going along with what I’m told feels horrible but at least I don’t feel vulnerable and alone.

However, I’ve had a change of heart, all together regarding vulnerability; in that I’ve now shifted to believe that it’s merely about staying true to my good/positive authenticities and knowing that a ton of people are behind me to back me, such as the people on this site. Someone once said that overcoming the feeling of vulnerability has nothing to do with winning or losing, but it simply has to do with showing up.

If someone tells you that you’ll never be able to _____ again or that you are some ______ (insert something negative) thing, don’t believe that person. He or she doesn’t know for sure - there are studies and research, but every single one of us is different with outcomes, etc.; besides, what do you have to lose in trying? Strange things and/or miracles happen, and no one - no one - can predict what you will be capable of doing.

It’s easy to believe what you’re told - especially if it’s said over and over again and becomes the recording in your head and/or from someone you trust and/or perceive to be of higher stature, etc.

We can just do what we can, and who knows what can happen. We can just keep trying, stay positive, keep moving, keep imagining and feeling, and take the baby-steps to make that feeling a permanent one. As someone who I admire for having such great courage says, “don’t let your dreams get dusty”. Imagine it - so much so that you can feel it - then take baby-steps toward that which you imagine.

People are human beings and make mistakes; and what they say isn’t guaranteed, so forgiving them frees up our energy to put toward something else that’s much more important and worth it.

Whatever is meant to happen will happen, even if it’s a cliche and sometimes disturbing; just keep moving, keep believing in yourself, and be prepared if what’s meant to be turns out to be extremely awesome.

As one inspiring video noted, never underestimate what you can do when you believe in yourself.
-http://vimeo.com/41271653

Never stop believing in yourself, no matter what. Please know that plenty of people believe in you…it helps to know this when you struggle with believing in yourself.

Also, there’s a quote about daring greatly that says:

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.

The credit belongs to the man (or woman :slight_smile: who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly…"

Basically, you have to show up; you must take the risk; expect to fall and fail, and when you do, get up and try again. If you need a break, take a break; and never stop trying.

I like to think that anything is a choice - not as far as choosing to walk if you’re paralyzed, etc. - but we have a choice as far as how we think about that…whether or not our thoughts come from a place of fear or from a place of love.

The same is so for going for it; you can decide to go for it and possibly humiliate yourself and possibly succeed - or you can decide to spare yourself any humiliation and any risk and have regrets for not trying.

The most empowering thing is that you can decide which “path” to follow. It’s all up to you and what you want to do.

14

I hate to disappoint you, but Good luck with getting a therapist, or anyone else, to tell you what adjustments to make! My PCP has ordered therapy twice about a year apart with that goal. The first time both the OT & PT worked with me on exercises which was good, but I expected more. This time the OT evaluated me and decided against OT. He gave me a few obvious suggestions. I had a different PT this time that was somewhat familiar w/ Ataxia. He worked on some balance exercises, and I will continue those, but offered little else. Except to slow down and think before I act. (That is good advise really.)

I decided while cooking lunch New Year's Day that I truly want a kitchen that is adapted for my limitations and not have to re-do this one and do all the thinking about how to it. One of my daughters was here to help us out last week and she says she should follow me around one day and be my therapist to advise me how to do things and what not to do. She helped me a lot with things like use the grabber to get clothes out of the dryer and use paper towels which are close by to dry one dish instead of trying to get a cloth towel from the pantry. ( Maybe this is involved in slowing down and thinking! ) I see now that I try to stand to do too many things. Maybe these are obvious things to most people,too.

I certainly expected retirement to be different, pre-ataxia. I really expected to be 90 years old and still riding my 3 wheel bike around town, changing my own light bulbs, etc. Just goes to show that we can't count on anything from one minute to the next--Not life or quality of life. We just have to make the best of each moment God gives us.

15

What seems to help me not go there or get out of this is to truly help someone with their need. It gives me a purpose and makes me feel good when I can do that for someone elce.

I find that I have to discipline my focus. If I don't it takes over and controls me instead of me controlling it. Hope that makes since.

I started doing a gratitude list of 3 things per night just before bedtime. At first I didn't have 3 things that I was grateful for. So I began looking throughout my days and would find 3 to be thankful for. Then after a few weeks I added more and more until it started becoming natural to look for things during the day or making them happen so I'd have something to be grateful for.

I was told if everything would disappear that I wasn't grateful for what would I say then? At first it started with stuff in my house. Then I gradually added people etc. Just try it for a month to see what it will do for you! :0)