anybody out there im sick of being locked in my own prison my house ! dont answer the phone or the door because people think im drunk they have no clue . been to many doctores and nuraligests the answer is deal with it aint nothing we can do . friend avoid me because ??? i dont have kids never maired and my sister doesnt want to deal with me denial i guese easyer for her to deal with if i was a alcohic and did this to my self. her two daughters liz and jess ages 21 and 19 come see me regulary they know this is something else im not f___d up
Bob
I think you need to find things that you can do to make you feel happy. This is a good place to find support, you can also try to find some sort of support group in your area. I belong to one where I live. I to was told that there is nothing that could be done also. I found a great Dr. in Boston that I love. I don't really care what other people think, I think you need to find people that will be supportive and care for you. If you're able to try to do some physical activity, find things and devices that will help you in your everyday life, stay strong.
Jack
I understand what you mean. My circumstances are different in some ways - I have grown children and grandchildren - but I hate asking them for things, it feels like I've lost my identity completely. I used to be able to help them out-now I feel like a burden to everyone. They don't make me feel this way - they try to help, but they are all at the very, very busy part of their lives with little kids and jobs and when I ask them for help it feels like not only am I not helpign them the way I used to, but I'm adding to their stress. I hate that. I hate everything about this. I just turned 50 and feel like I might as well be 100. my parents are 70 and are worried about me and helping me .. this just isnt' how my life was supposed to be. I can't even begin to talk about the personal life losses without breaking down.
Hello Bob-
Please know that you have a large “family” here and we are all experiencing similar situations in one way or another. Ataxia can cause a person to feel horrible isolation, particularly if you are not able to get out on your own very much. Personally, I am so very thankful I found this site and feel such a relief to know that I am “not alone”. I hope you are able to connect with others on here and feel less isolated.
I have found that putting my energy into “the positive” and things I can do has greatly lifted my spirits. I also lost friends and family’s over this (go figure???), but I concentrate on those that do support me. Makes for a much more pleasant outlook.
Always remember that we are here if you need to vent, chat, connect, etc! Blessings to you!
Lorraine
Bob,
Yes, isolation is common for all of us here.
While this site can give us a place to connect it's important for all of us to have face to face contact with people regularly. I'm glad you have your nieces coming to see you!
Most of my family doesn't get it either. My sons and husband do, but the rest act like they believe it's all in my head or I'm making it up. My symptoms come and go, which probably makes no sense to them either.
I've found using a cane helps strangers understand I'm not drunk.
Stay connected here. The people here DO care about you. You're not alone.
hi,
thank you for your resonce a cane is not a option i have to use a walker or i lose my ballance i bought my condo 8 yrs ago getting ready for the time i couldnt work anymore it is great i live in Denver co. i was the boss at work all the young guys loved me the older people resentid it the owners told me that it was time i leave for the better of the company . dont get me wrong they have been good to me since i left last july . they still pay for my insurace work was my life and family now im alone and im haveing a hard time alone. i need a suport group or somebody to talk to i was hopeing i had ALS it would work its corse and i wouldnt have to deal with this shit anymore . being 1/2 messed up is worse than dieing with respect. i got to deal with this my nieces love me and told me dont give up . i love them but it is hard bob thanks
Julie Hahn said:
Bob,
Yes, isolation is common for all of us here.
While this site can give us a place to connect it's important for all of us to have face to face contact with people regularly. I'm glad you have your nieces coming to see you!
Most of my family doesn't get it either. My sons and husband do, but the rest act like they believe it's all in my head or I'm making it up. My symptoms come and go, which probably makes no sense to them either.
I've found using a cane helps strangers understand I'm not drunk.
Stay connected here. The people here DO care about you. You're not alone.
Feel for you dude, I have a loving wife and still work (how, I don't know), I get very depressed quite often now, don't venture far from a toilet, bleak is the word, use a stick and feel useless, DWP don't get it, get great support from Retford hospital, they are brilliant. Chat to others on here Bob, we're all in a similar cart ! Pecker up buddy !
Hi Bob, thanks for writing. I know that it’s not easy to reach out and I’m glad you did. We also live in Denver, our 20 year old son was diagnosed with SCA 7 four years ago. I won’t lie, the journey is hard but we have found several groups here that are very helpful. First, there is a neurologist who specializes in Ataxia and has an ataxia clinic that I can give you the numbers for if you like. She is great and will keep you up to date on all the clinical trials and news on Ataxia. RTD has an access a ride program for a reasonable cost that can take you anywhere you need to go. Craig rehab on Hampton and Clarkson has a gym specially for spinal cord and brain injury people, not only a great place to work out but lots of younger and middle aged folks so you may meet some new friends. And last we have a great support group, www.ataxia.org look for Denver area support. I really hope one of these will work to help you get out among people who understand and I hope to see you at PEAK someday!
Hi,
We are a family here going through tough times and the day is never the same. I live in India and it is not at all user friendly for the handicapped. I manage to go,to the hospital and this is my outing. I am confined home but see my relatives as they visit me twice in a month. It is depressing but I do not give in. My friend,try to stay strong. You will see some light in the dark tunnel and it will help cheer your dried spirits. Good luck. Always hope for something positive. We may not achieve big but small gains will take us a long way!
I am pleased for you that you found this group Bob. I hope the responses give you encouragement and that you will keep us posted.
Take care, Patsy
UK
Bob,
One thing you can try to help with the loneliness is to get a pet. I suggest a cat, minimum upkeep with maximum affection. And they never judge. I have 2, and no matter how much I wobble around they just couldn't give a rats butt.
hi
nice to now im not alone in Denver, been going to Spalding hospital in Aurora since sept. great for the body but not solveing my macho man image in my thinking . i am imbarest useing the walker thats for old guys im only 54 yrs old asking for help to take a pee is imbarsing wold love you to give me support phone numbers in denver i have accept this and now is time to move on with what i have poor me aint working anymore i am strong willed , im going to point my head hi and move on thanks again BOB
nanette Redman said:
Hi Bob, thanks for writing. I know that it's not easy to reach out and I'm glad you did. We also live in Denver, our 20 year old son was diagnosed with SCA 7 four years ago. I won't lie, the journey is hard but we have found several groups here that are very helpful. First, there is a neurologist who specializes in Ataxia and has an ataxia clinic that I can give you the numbers for if you like. She is great and will keep you up to date on all the clinical trials and news on Ataxia. RTD has an access a ride program for a reasonable cost that can take you anywhere you need to go. Craig rehab on Hampton and Clarkson has a gym specially for spinal cord and brain injury people, not only a great place to work out but lots of younger and middle aged folks so you may meet some new friends. And last we have a great support group, www.ataxia.org look for Denver area support. I really hope one of these will work to help you get out among people who understand and I hope to see you at PEAK someday!
Hi Bob, Welcome to this site! You've definitely come to the right place for support for your ataxia. I was diagnosed 10 years ago. I felt as though I was the only person in the world that had ataxia. Before I was diagnosed, I had never even heard of it and didn't know anyone with it. I finally found this site and can't say enough about it! Hope you feel the same way and don't feel so alone with your ataxia! Yes, ataxia is very frustrating and challenging to say the least. I find that exercising (I have to hold onto something, unless I'm doing floor exercises) for strength and balance helps me feel better physically and emotionally. I walk on a treadmill, as I can hold on. I also try to eat as healthy (lots of fresh fruit and veggies) as possible. Is it easy, NO, but worth it, as I'll never give up or give in!!! Best to you...,;o)
Your story is sad to read.....I hope you join the support groups in Denver. I find that focusing on anything positive ...no matter how small makes your world better.....the more you find a million things that are genuinely depressing and you focus on them, the worse your daily life is. What you are going through is not easy for sure and I understand that. Maybe you can think of ten positive things in your life...focus on these and eventually you get more things to be positive about...sounds silly but it works. You can't change the hand you were dealt with....and you are still young....you however can choose if you will get depressed and stay that way for the next 20 years or more...or deal with ataxia positively. it is not easy but it needs you to jjust take small steps that can change your life. I also know stress makes ataxia worse..........you may find focusiing on what is depressing will cost you finding a really good neuro or having good therapy. I wish you all the best.........from Sweden with Hugs......
Great thoughts Nima33, and so true...., ;o)
Bob, hang in there. It’s great you have kids around you. They will keep you young if you let them. I found that my grand kids instinctively understood what I was going through and the dogs that were around! Suddenly I became a dog person (wasn’t before I was sick). They had a sense of my balance problem and calmed down around me as if to say they understood. Haven’t met a dog yet that doesn’t like me. This part of my experience is a bit weird. I’ve fired a few docs who were unsympathetic to what I was going through. I now have good docs who really are able to help me make my life better. It sounds like you know what you have to do-- call people, get out, do things no matter how hard it is. Love yourself first, and help someone else–it really will help you more than you can imagine. Take it one day at a time-- looking too far ahead isn’t useful. I’ve had ataxia for 12 years and never predicted I’d still be as well as I am. Be sure you don’t have sleep APNEA. I slept for the first couple of years far too much due to this–tired all the time. It’s a common problem with ataxia and causes sleep deprivation and depression. It’s easy to fix and gives you a new life and more hopeful outlook once fixed. Good luck.
Hugs to you Bob. Stay strong. Acceptence is the first step. Then everything else comes together. Support is very important. Friends, family and online support groups. Whatever is there for you, use it. Life is way to short. Do what you can and what makes you happy.
Hi Bob, Lorinn here.
I appreciate your openness and honesty. You mention feeling like "1/2 a man"; although I'm a woman, I can so relate to feeling like 1/2 a person since I've lost the ability to work. I was always very good at whatever job I undertook, until I started to become symptomatic. I lost energy first, then mild cognitive symptoms, balance problems, etc. I didn't have any idea that the falls, memory problems, coordination, etc were due to ataxia. I have FXTAS, which happens as a result of the Fragile X gene. I was able to work until 2008, and then tried to learn a new profession but couldn't manage the courses any more. Without work I have had to find other things about myself to develop and learn to value. It's hard! I tend to isolate, too, and like you have had some family members distance themselves; and that hurts. But do your best to hold tight to those that still want to be with you. Love can do amazing things.
It's all a process, and I think we grieve the lives we had for a long time. Maybe that grief never entirely leaves us. But it helps so much to have people like yourself put our feelings into words. It helps all of us connect with each other, and that is just so healing.
Try to remember that you are more than your job, so very much more. Learn to enjoy the slower pace of life. Look for things that make you happy. Try on all of the advice that you hear here; if it fits, great! If not, don't sweat it.
We are here for you... keep touching base, ok? Hang in there!
Lorinn
bob said:
hi,
thank you for your resonce a cane is not a option i have to use a walker or i lose my ballance i bought my condo 8 yrs ago getting ready for the time i couldnt work anymore it is great i live in Denver co. i was the boss at work all the young guys loved me the older people resentid it the owners told me that it was time i leave for the better of the company . dont get me wrong they have been good to me since i left last july . they still pay for my insurace work was my life and family now im alone and im haveing a hard time alone. i need a suport group or somebody to talk to i was hopeing i had ALS it would work its corse and i wouldnt have to deal with this shit anymore . being 1/2 messed up is worse than dieing with respect. i got to deal with this my nieces love me and told me dont give up . i love them but it is hard bob thanks
Julie Hahn said:Bob,
Yes, isolation is common for all of us here.
While this site can give us a place to connect it's important for all of us to have face to face contact with people regularly. I'm glad you have your nieces coming to see you!
Most of my family doesn't get it either. My sons and husband do, but the rest act like they believe it's all in my head or I'm making it up. My symptoms come and go, which probably makes no sense to them either.
I've found using a cane helps strangers understand I'm not drunk.
Stay connected here. The people here DO care about you. You're not alone.
You are so right Maryseas! I was diagnosed with ataxia 10 years ago, although I think my symptoms started before that time. I recall several incidences when things were "off", although at the time, I had no idea why. Anyway, around the same time of my ataxia diagnosis, I was also diagnosed with sleep apnea. I had suffered with depression for several years, so putting it all together finally made sense. There is a common thread between ataxia, sleep apnea and depression. Fortunately, there is help for sleep apnea and depression! Now, if only there was a "cure" for ataxia...,ha! In a perfect world..., ;o)
Hi Bob, I think we all go through the greiving process of our old self. But, once we do and we finally get tired of it (sounds like your there) I think it was a good motivator for me. I found that my world became very small because I didn't push myself to meet new people. So I signed up for a Yoga 50+ class to make me get out of the house on a regular basis and interact with other's even if I didn't feel like doing it. I read somewhere that when you smile at another person they can't help but smile back at you and they want to engage with you in some other way too!
Remember this is just a new chapter. Since the last chapter was just diffrent you can try on new things to see what works now in your new life.
I found that focused movements on a regular basis (even though I couldn't do everything everyone elce was doing in the class at first) it not only motivated me to push myself much more than I would have on my own but I found that the teacher really took more of an interest to help me more one on one in the class (my thinking is her teaching ability was taped into to helping me move a bit better). I am glad I pushed through my fear of mostly what other people thought because going to the class I got allot of little tips that help me funtion a little better doing everyday things.
My experiance to is it seems funny that when I have more interests others find me more interesting, and so can I now.
Our depression will keep us down if we choose to let it. I find getting my thoughts on others really helps bring me out of that funk. You can't think or feel sorry for yourself when your helping someone else and there is always someone else worse off.
Also what I started doing was writing 3 Gratfuls per day even when I didn't feel like doing that. I couldn't come up with more so I setteled on 3 and gradualy have moved up. I really felt that I didn't have anything to be greatful for and had to dig deep. There is always something even if it's a roof over your head, water, food to eat etc. I found that I started looking for things to write down during the day because I was having a hard time finding even 1 let alone 3. Try it just for a week and if it works continue. I found it really helped me and after one month I just automaticly added 2 more then 3 more etc. I find it fun now and hated it in the beging! :0)
Also I found that writing about diffrent thoughts about hobbies that wantyed to try on to see if they would fit or I could do them. :0) Keep us posted here how your doing and what your doing if something helps or it down't help too. :0)
I remind myself daily to try to focus on what I can do now and forget the things I can't. :0)