I think I've told you before Jeannie, but I like your attitude about this being a new chapter in your life! I try to remember that when I'm having a mini-pity party...,ha! I also remind myself of what I can still do, and try not to concentrate on what I can no longer do! ;o)
hi Bob, I can understand how angry you feel, my son experiences the same attitudes when he goes out, he also has ataxia, my brothers and sister thought he was drug damaged, and avoided him now that they know what it is he has they now avoid him as it seems to be too hard to stand still and talk to him or take the time to listen to him. My heart goes out to you, people can be so cruel, my son has stopped taking his medication says it makes him sick, is having falls, but wont use a cane, I can understand at 38yrs old it isnt the best image, but I wish he would just so he doesnt fall. Hang in there Bob, hopefully as time goes on this condition will be know by people in society,I feel grateful that I found this site, my son at last says he will have a look at it. Its not the same as having real one on one contact in a support group setting, we dont have any support meetings for this condition in sydney australia. But atleast people can express themselves here, and get some postive information.
Rose, I know that these things are so challenging, they are for me too! But when I can focus on them it really seems to help me. My Dad always told me "You either do it or you don't, there is no trying. If your trying your 1/2 way there, so why not go all the way." So I hear his voice egging me on. So when I try something still I feel I have to find someway to make it happen, even if it's doing it just a little bit when I get there and do it for a little while just to see if it works for me or not. If it helps me I work harder to get more if not I'll try something else but I feel good because I didn't give up and let the ataxia win. For some reason I just can't give into it.
I'm glad my exspeance an attitude that I have to work on daily helps you! It actually helps me too by putting this down because I am talking to myself at the time too. It helps remind me and bring things to the front of my mind because sometimes I forget until something comes up here. So actually I need to thank Bob and everyone for sharing thoughts they have because I can relate and lived allot of moments a 1000 times myself. :0)
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rose said:
I think I've told you before Jeannie, but I like your attitude about this being a new chapter in your life! I try to remember that when I'm having a mini-pity party...,ha! I also remind myself of what I can still do, and try not to concentrate on what I can no longer do! ;o)
Bob, I know what you mean. There are days I feel so lost and helpless. I find, the more we lock ourselves away, the worse it gets. It is important for you to connect with people once in a while. Yes, the issues are still there. But we have to be our own bff...Do you have the chance to see a psychiatrist who specialises in neuromuscular diseases? I saw one who helped me get through the day to day issues and suggested some approaches such as cognitive behavioral therapy to help me deal with my own feelings and phobias. Are there disability groups near you? Take advantage of those....you have more to offer than you realise.
hey you all,
ive been going outside !!!!!!!!!!!!!!!!!!!!!! thanks to you everebody on this site im stilled scaread it is a scam. my problem is i dont trust people i did my taxes at hr block today was a big stersser for me its done now and the lady was great . she took my hand and walked me to my truck. i have to remember theres good people out there !!!!. i am my wost enimy going to get that soon. my motoo is move on with you got . easyer said than done. thank you gurys Bob
Yeah! Great Bob. Thanks for sharing your thoughts with us! :0) I'm so happy for you that your taking the bull by the horns (so to speak) and pushing yourself to go out and do things! :0) Yeah! :0)
bob said:
hey you all,
ive been going outside !!!!!!!!!!!!!!!!!!!!!! thanks to you everebody on this site im stilled scaread it is a scam. my problem is i dont trust people i did my taxes at hr block today was a big stersser for me its done now and the lady was great . she took my hand and walked me to my truck. i have to remember theres good people out there !!!!. i am my wost enimy going to get that soon. my motoo is move on with you got . easyer said than done. thank you gurys Bob
hi jean,
i dont spell good must be the schools in neb. in the 50ths . they thought you how to work the farm instead HA HA love to hear from all im going to get out more and staying out of my messed up head there is great people out there that dont care how messed up i walk the good people will help me walk into the store . thanks for your support BOB
Hi Bob, I totally get the spelling thing! I wasn't good to start out with and now having the ataxia I think it's helped make it worse! Hahahah I don't know but that's a good excuse anyway for me. ;:0)
See we all seem to have this in comon. You just brought up a great subject so we could talk about our issolation and exsperiances too! :0)
Keep on keeping on! We're all here with you in spirit!!!!!! :0)
bob said:
hi jean,
i dont spell good must be the schools in neb. in the 50ths . they thought you how to work the farm instead HA HA love to hear from all im going to get out more and staying out of my messed up head there is great people out there that dont care how messed up i walk the good people will help me walk into the store . thanks for your support BOB
What you all have said is great advice, not only for Bob, but for me! We may have ataxia, but ataxia doesn't have us...,ha! I repeat this saying to myself several times a day! I won't give up or give in! Ataxia is frustrating and challenging, but with the support and advice of all the wonderful people on this site, we will endure! That's my opinion and I'm sticking to it...,ha! ;o)
Hi Bob,
The first thing I can tell you is DO NOT BELIEVE TRADITIONAL DOCTORS! I would seek out Dr's who treat outside the box. Research electromagnetic pulse therapy. Research energy medicine. Go to advancedcelltraining.com Dr. David Cohen of Brooklyn, NY is an amazing healer. Also Dr. Russ Bianchi. www.russbianchi.com Remember the body is ALWAYS in a state of repair. I would also get tested for gluten sensitivity. I would also study how to clean out your gut. There is a direct correlation between the gut and the brain. Have a goal to get off pharmaceutical drugs and NEVER get the vaccines they are trying to brainwash the public with. www.vactruth.org is a very informative website that will give you all the ingredients of the vaccines you have had. Clean up your diet. Only eat whole foods. Dr. Russell Blaylock is another amazing healer. Most importantly study the Bible. The Truth will set you free. I just lost my Father of sporadic cerebellular ataxia. It was too late for my Dad but maybe it isn't for you. Take control of your own health!!!
Way to go Bob!!! Glad you had a good experience, even though you were getting your taxes done...,ha! Seriously, that's wonderful you got them done, as it's one thing off your mind! And you got out of the house...,good for you! There really are kind, helpful people out there. I use a cane and people are always opening/holding doors open for me, which I so appreciate! I've told this story on this site before, but will tell it again for you. A man who was talking on his cell phone asked if he could open my car door for me. I had my cane in one hand and a package in the other. Of course, I said yes and GREATLY appreciated his help! So keep on keeping on Bob!!! ;o)
hi Bob,
i'm lorraine. i have cerebellar ataxia type 2. i'm aware how isolating this disease is. i know this sounds kooky but your body is only a vehicle. there is much more. science claims we use about one tenth of our brain. let's discover what else is in there. i started eastern philosophy about 25 years ago. i can be very lazy. but i'm hoping to discover more about what's inside. i belong to an ataxia support group. i feel most comfortable around them. we're all here, we understand.
lorraine
thanks
Lorraine Lerner said:
hi Bob,
i'm lorraine. i have cerebellar ataxia type 2. i'm aware how isolating this disease is. i know this sounds kooky but your body is only a vehicle. there is much more. science claims we use about one tenth of our brain. let's discover what else is in there. i started eastern philosophy about 25 years ago. i can be very lazy. but i'm hoping to discover more about what's inside. i belong to an ataxia support group. i feel most comfortable around them. we're all here, we understand.
lorraine
Hi Bob. Sorry you feel this way. No! Dealing with an alcoholic is not easier. I did that with my ex for 10 years. Im a lot easier to handle then he was.lol. You need to talk to your sister. This is a sad thing were going threw. And we need all the help we can get. Im sorry. If it was me. I would say to my sister. "You know sis. I wasn't as luck as you!" Ill keep my mouth shut. Your not alone. A lot of us feel the same as you.