Also can you imagine being diagnosed with ataxia before the internet and being left in limbo until your yearly 10min appointment, it must have been horrendous for some people. I think the internet is amazing, I mean look at us just at this moment, you are in Israel and I am in Scotland talking about the same concerns.
I believe the key to all this is having a positive attitude. Works for me, as even though I can't control having ataxia, I can control my attitude about it! Don't get me wrong though, I do have mini-pity parties, as I'm only human, but they're short lived, as than I remember to count my blessings, and also be thankful for all I can still do, rather than what I can no longer do. Yes, ataxia is challenging and frustrating, but it is what it is. I try to concentrate on living my life one day at a time, not thinking too much about the future, as none of us know what the future will bring. I will never give up or give in though. I will continue to exercise for strength and balance, eat as healthy as possible, and trust that God has a plan for me. I will embrace life, in spite of ataxia, as that doesn't define who I am as a person. I will continue to vent on this site, and to family and friends that are supportive and understanding, if need be. My best to all..., ;o)
Well said Rose! Choose to make it a great day no matter what comes with it! :0)
rose said:
I believe the key to all this is having a positive attitude. Works for me, as even though I can't control having ataxia, I can control my attitude about it! Don't get me wrong though, I do have mini-pity parties, as I'm only human, but they're short lived, as than I remember to count my blessings, and also be thankful for all I can still do, rather than what I can no longer do. Yes, ataxia is challenging and frustrating, but it is what it is. I try to concentrate on living my life one day at a time, not thinking too much about the future, as none of us know what the future will bring. I will never give up or give in though. I will continue to exercise for strength and balance, eat as healthy as possible, and trust that God has a plan for me. I will embrace life, in spite of ataxia, as that doesn't define who I am as a person. I will continue to vent on this site, and to family and friends that are supportive and understanding, if need be. My best to all..., ;o)
Thanks Jeannie, I always get so much out of what you have to say also! ;o)
And I am in Australia....we would be handling ataxia "in the dark" but for websites such as this one. You are so right.
Punk said:
Also can you imagine being diagnosed with ataxia before the internet and being left in limbo until your yearly 10min appointment, it must have been horrendous for some people. I think the internet is amazing, I mean look at us just at this moment, you are in Israel and I am in Scotland talking about the same concerns.
You have said it in a nutshell,,,, I like,,,, worth embracing your thoughts Rose,,,, thank you.
rose said:
I believe the key to all this is having a positive attitude. Works for me, as even though I can't control having ataxia, I can control my attitude about it! Don't get me wrong though, I do have mini-pity parties, as I'm only human, but they're short lived, as than I remember to count my blessings, and also be thankful for all I can still do, rather than what I can no longer do. Yes, ataxia is challenging and frustrating, but it is what it is. I try to concentrate on living my life one day at a time, not thinking too much about the future, as none of us know what the future will bring. I will never give up or give in though. I will continue to exercise for strength and balance, eat as healthy as possible, and trust that God has a plan for me. I will embrace life, in spite of ataxia, as that doesn't define who I am as a person. I will continue to vent on this site, and to family and friends that are supportive and understanding, if need be. My best to all..., ;o)
Thank you Storm! This site has helped me feel "less alone" with ataxia! My best to you..., ;o)
Hi there Punk,
Yes, I agree, the Internet can be amazing, the greatest invention of the end of the 20th century. I am back after a weekend (in another city) with my daughter (#2) and her young family (husband, 51/2 year old daughter, 2 month hold son.) My daughter is the typical new mother, tired, nursing, trying to do it all... I wish I can help her more. It's frustrating (and annoying) that the older other grandma can do more than me! Yet me and my granddaughter are good pals; we have our secrets and I can(still) read to her; and she is full of smiles and is so cute!!!!. My daughter and I went to the park in the afternoon near her home. We took the baby and one guy,a young dad, thought I was my daughter's sister! I (He should only know!) In the morning, I went to the park on my own steam (where I read a book)
instead of going to the far-off synagogue.
Scotland, now that is a beautiful country (from what I hear). Never been. Only saw the movie, The Last King of Scotland.
I also feel in limbo. I don't even know what my diagnosis really means. Now, I think, my main neurologist, is checking for a future tumor. It turns out cancer makes its appearance with CA sometimes, in rare cases. Great. What else is new?I cant believe I fell into this hole. Its too awful to contemplate this, so (like the fictional Scarlett OHara of GWTW fame), I won't think about it now. N
Punk said:
Also can you imagine being diagnosed with ataxia before the internet and being left in limbo until your yearly 10min appointment, it must have been horrendous for some people. I think the internet is amazing, I mean look at us just at this moment, you are in Israel and I am in Scotland talking about the same concerns.
I love the way you take Ataxia, it inspires me on going on and take all the positive things of life... today Im going to a special needs center so they can make a therapy that really works on me, Ive decided to take therapy to improve my strength, balance and speech, even though I feel my husband is trying hard to accept the "new" me, it makes it harder for me to stay strong... any advice?5
rose said:
I believe the key to all this is having a positive attitude. Works for me, as even though I can't control having ataxia, I can control my attitude about it! Don't get me wrong though, I do have mini-pity parties, as I'm only human, but they're short lived, as than I remember to count my blessings, and also be thankful for all I can still do, rather than what I can no longer do. Yes, ataxia is challenging and frustrating, but it is what it is. I try to concentrate on living my life one day at a time, not thinking too much about the future, as none of us know what the future will bring. I will never give up or give in though. I will continue to exercise for strength and balance, eat as healthy as possible, and trust that God has a plan for me. I will embrace life, in spite of ataxia, as that doesn't define who I am as a person. I will continue to vent on this site, and to family and friends that are supportive and understanding, if need be. My best to all..., ;o)
Hi Cynthia, Just take it one day at a time! That's great that your husband is accepting! Support and understanding mean so much! I have a very supportive and helpful husband also, and am so thankful for him! That's great that you're going for therapy. I do that each year also, as my insurance will only pay for so many visits per year. The rest of the time I do exercises for strength and balance at home. I think it's easier ti accept ataxia when you say this is my new "normal". Don't ever give up or give in though, as ataxia doesn't define you as a person! You are special! Stay as active as you can, safely! One of my favorite sayings is (for those of you who've heard this before, please bare with me...ha!), "a woman is like a tea bag, she never knows how strong she can be until she gets into hot water"! (this can apply to a man too). ;o)
Hi Cynthia,
Ive had ataxia for years now. I really haven't accepted it yet. We have to try. I keep saying that. But something always happens to set us back. But now that I have a supporting person in my life. It makes all the difference in the world. And you do have to take one day at a time. And do not give up! Rose said it all!
Hi lori! It has been real hard for me to accept my Ataxia... Im a life lover and I was so desperate that I even thought about suicide.. I have even been afraid of having a child... even of having a dog! Its been only a year that Ive been diagnosed Ataxia... Ive been in depression after depression, but Ive learned that I have to make the best of it (my life), and reading all of the support words this group has made really helped in my decisions and my mood! Never again I will think of suicide because I learned to love my life with or without Ataxia... Ive been in this group only for days and this oeople have really changed my life and the perception I have of it! I really know what youve been through and now I know you really can stay strong!
Lori said:
Hi Cynthia,
Ive had ataxia for years now. I really haven't accepted it yet. We have to try. I keep saying that. But something always happens to set us back. But now that I have a supporting person in my life. It makes all the difference in the world. And you do have to take one day at a time. And do not give up! Rose said it all!
Hi Cynthia I guess were strong just by living everyday. Wow only a year. How old are you. If I may ask. Do you have any kids? Ataxia is hard. But please don't think suicide is the answer. Its not. Yes we do do the best we can. It might feel like nothing to us. But other people feel different. My family does not see the way I feel. They say I just walk different. I feel it is a huge chore just to walk. Im glad you found us. This site is wonderful! And it will slap you in the face when need be. lol A lot of us do not deal with this well. Some do. But we have to be positive!
Well said Lori! ;o)
Hi Cynthia
I have not dealt with having Ataxia very well as like so many I was very vocal and mobile.I was brought up to believe in Euthanasia but I don't believe in it now.I have been inspired by someone with Motor Neurone Disease.
I think acceptance comes as a final stage.What has helped me is someone on this site saying this is the new normal.
Don't beat yourself up about having such feelings.Be kind to yourself.It is nice to know others have gone before me and their coping strategies are so valid and helpful.
Strong, shmong. To those who have it hard, I think these are pretty words but obviously unhelpful. I think its actually quite normal to have suicidal thoughts at some point. Bravo that you are so open and said the s word, whoever said it. A cure is the best answer, short of that, a good therapist who deals in physical infirmaties (such as MS or cancer) is the answer. Also drugs. Hope is also a very powerful drug. Try Lourdes or hypnosis. Feel good. In health, N
If you feel like you are holding too many emotions in, by all means, talk to a professional, psychiatrist, social worker, min- ister. You need to say out loud what you are feeling. I too am angry at what has happened. I really wanted to enjoy my golden years, but it looks like I might not have many. I don't like it when people suggest I think of transferring to alternative living arrangements. Not yet!
I haven't cried, but sometimes I wish I would. Get it over with and move on!
It's not easy trying to 'stay strong'. Sometimes you're doing yourself the biggest favour
by letting it all out, venting, whichever way works for you. We all need to let off steam,
we're human!
I like to feel as though I've gone through the stages of disbelief, grief and anger and
finally reached acceptance. You have to go on, and it makes life a whole lot easier.
By acceptance, I don't mean giving up. Anger was eating away at me, I was getting
nowhere fast, it was a vicious circle. I still get frustrated by what I can't do but then
there were a lot of things I couldn't do anyway, so what.
Now I refuse to dwell on the past and try not to predict the future, just put all my
energy into the present. xB
I'll try to follow your advice on here. Hopefully it will help me too!
Beryl Park said:
It's not easy trying to 'stay strong'. Sometimes you're doing yourself the biggest favour
by letting it all out, venting, whichever way works for you. We all need to let off steam,
we're human!
I like to feel as though I've gone through the stages of disbelief, grief and anger and
finally reached acceptance. You have to go on, and it makes life a whole lot easier.
By acceptance, I don't mean giving up. Anger was eating away at me, I was getting
nowhere fast, it was a vicious circle. I still get frustrated by what I can't do but then
there were a lot of things I couldn't do anyway, so what.
Now I refuse to dwell on the past and try not to predict the future, just put all my
energy into the present. xB
As has been said Cynthia, don’t forget to be kind to yourself. Don’t beat yourself
up for having ataxia. You will overcome, try to focus on something that makes
you smile, however briefly. Don’t forget we all deal with these feelings you have,
we all belong to LWA because we care about giving support in times of particular
need. xB