It is very scarey to think about myself, and what I can do or not do. I can tell I am slowly progressing. About five years ago I could walk with no assistance, then, about 2 years ago I needed to start using a cane. Now, I have to use a walker. When will I get to the point when I need a wheelchair? I try not to think “what if” but it is very, very scarey. No one understands, but other ataxians. I love this site. I can always vent my concerns, or just see what others have going on.
Hi Butterflyflyaway, I'm so glad to hear that your just venting about future triping. I think we as ataxian's tend to go through depression if we let ourselves go there. When I start to do that I actually have to say "STOP" outloud and change my persepective and or where I'm at physically. I have to adjust my thinking about what I can do for someone else so I get out of thinking about myself. Because it's not productive in any way that I can see. I won't alow myself that luxury because then the ataxia wins and somehow I get more defeated and the ataxia gets worse. It's a downward spiral for me so I can't alow myself to go there so I stop it before it goes anywhere and I find that helps me.
I choose (I think it's a decission while I'm in a good space that I make so when any time comes up I get low my decission is already made) to focus on what I can do and do it as well as I can and push myself to go beyond a little.
I have to remind myself that there is always someone out there worse off in some way. I think "What would they need even just a phone call, or an email or a hand written letter or a smile etc. I can usually find something. Then I usually forget about my nasty thoughts.
I think when I get laxed and don't push myself to exercise even a little bit I get more lazy and my symtoms start to get worse. But the good news is even doing a little after 3 day's everything seems to get a little better. Exspecially my mood.
It's a double edge sord for me about admitting (venting bad thoughts). Because I don't want the thoughts to grow any.
I also have programed in my IPhone another saying that pops up throught my day as a reminder that I can do anything for 12 hours that if I thought about doing it forever I couldn't. So just for today I can. Then tomorrow it pops up again to remind me. It helps me stay in today! :0)
Tomorrow is another day! :0) I hope that you choose to think more about what you can do for that day! :0) I may need this reminder to at some point. <3 :0)
Hi butterfly you never know what lies ahead and I cant really know what you go through. In my life many things have happened that I wish just didn't, but what I do know is that you've just got to keep going and look after yourself as much as you can. Eat well and exercise and just keep going. I don't know if they are your little girls but that's your inspiration right there. Who knows about the wheelchair, its something I don't even want to think about for Cassie so I don't. AS long as she is walking that's what I will concentrate on. I hope you start feeling better Butterfly and you just never know, they may or may not find treatment in the next few years, who knows? Just keep the faith
Dear Butterflyflyaway, Jeannie and Punk said it all! Yes, ataxia is scary, as we don't know what the future holds. All I can say is, due to the fact that we have no control over that ( except exercise and eating healthy), we DO have control over our attitude. I try to think as positively as possible, as this helps me push bad thoughts out of my head. Also, like Jeannie said, thinking about and doing for others gives one something else to think about, rather then ourself and our ataxia. Like you, I use to walk unaided, but now use a cane when I leave my home. I don't use it inside my home, although I've taken some pretty nasty falls that...,duh...,I should...ha! Do the best you can each day and try not to worry! I know it's easier said than done! I repeat this to myself at times, "I may have ataxia, but ataxia doesn't have me"! You are not alone in your journey! My best to you..., ;o)
Wow Butterflfyaway!
Your post could so have been made by me!
My ataxia is something that, according to one of the consultants I see, I have had all my live. The ataxia hit me hard in 2008 after a bad fall at work and injury. After looking through my records, both electronic and old paper based stuff, my doctor(s) sent me for MRIs and other tests and to a specialist neurologist. Long story short - 'undiagnosed' ataxia!
I also had it confirmed recently that I have fibromyalgia after I asked my doctor if my childhood fibrositis could have some link to my ataxia. She, the doctor, looked at my records again and then told me on my next visit that I should have known about the fibromyalgia!
Any way, I too worry about the future and what it may hold. The trick is to not let our imaginations or fears get the better of us. This, I fully appreciate, is not always an easy thing to do. :(
I worried when I was told about my ataxia, I worried when it became obvious that I needed one walking stick to help with walking, I worried when the ataxia progressed (mine is progressive and degenerative) and I needed two walking sticks, I worried when I had to start using a mobility scooter to get around locally as I could no longer walk even the short distance to the local shops without such aid and I worry that in the future I am likely to need a wheelchair.
I try though to keep a positive attitude and not let my occasional worries define who I am.
I know how hard it can be 'not knowing' and how deep the troughs can seem compared to the perceived lowness of the peeks. I know just how much truth there is in the sentiments that 'they don't know' or 'they cannot understand' also. I know how active my imagination can be as well - I try to keep it in check. I know (to my own disappointment and, somewhat, shame) that some of my fears are based on my own preconceptions or misunderstandings. I'm by no means prejudiced against anyone but I have seen what illness and such can do to people so I try to not let myself be a victim to my worries or fears.
I do not know what anyone can do to 'turn that frown upside down' for you - it will be a different thing for each of us that brings about a positive. I do know though that LWA is a wonderful place that is full of wonderful people that will 'listen', understand, offer help or advice if possible and tolerate our venting in a caring way.
I hope that any reading this that need to can find something to help ease the worries and fears associated with ataxia.
Take care, keep strong and try not to worry too much.
Thank you! I know, it is just very hard sometimes.
Jeannie Ball said:
Hi Butterflyflyaway, I’m so glad to hear that your just venting about future triping. I think we as ataxian’s tend to go through depression if we let ourselves go there. When I start to do that I actually have to say “STOP” outloud and change my persepective and or where I’m at physically. I have to adjust my thinking about what I can do for someone else so I get out of thinking about myself. Because it’s not productive in any way that I can see. I won’t alow myself that luxury because then the ataxia wins and somehow I get more defeated and the ataxia gets worse. It’s a downward spiral for me so I can’t alow myself to go there so I stop it before it goes anywhere and I find that helps me.
I choose (I think it’s a decission while I’m in a good space that I make so when any time comes up I get low my decission is already made) to focus on what I can do and do it as well as I can and push myself to go beyond a little.
I have to remind myself that there is always someone out there worse off in some way. I think "What would they need even just a phone call, or an email or a hand written letter or a smile etc. I can usually find something. Then I usually forget about my nasty thoughts.
I think when I get laxed and don’t push myself to exercise even a little bit I get more lazy and my symtoms start to get worse. But the good news is even doing a little after 3 day’s everything seems to get a little better. Exspecially my mood.
It’s a double edge sord for me about admitting (venting bad thoughts). Because I don’t want the thoughts to grow any.
I also have programed in my IPhone another saying that pops up throught my day as a reminder that I can do anything for 12 hours that if I thought about doing it forever I couldn’t. So just for today I can. Then tomorrow it pops up again to remind me. It helps me stay in today! :0)
Tomorrow is another day! :0) I hope that you choose to think more about what you can do for that day! :0) I may need this reminder to at some point. <3 :0)
Thanks, I am, just sometimes it gets to you.
Punk said:
Hi butterfly you never know what lies ahead and I cant really know what you go through. In my life many things have happened that I wish just didn’t, but what I do know is that you’ve just got to keep going and look after yourself as much as you can. Eat well and exercise and just keep going. I don’t know if they are your little girls but that’s your inspiration right there. Who knows about the wheelchair, its something I don’t even want to think about for Cassie so I don’t. AS long as she is walking that’s what I will concentrate on. I hope you start feeling better Butterfly and you just never know, they may or may not find treatment in the next few years, who knows? Just keep the faith
Oh man, I agree with you all! Greetings on this beautiful sun filled day.
The only certain thing about the future is that it is uncertain. LOL!
After I was diagnosed I seemed to go very quickly from unstable walking to a cane and then to a walker. One of my biggest fears is that I would soon be in a wheelchair. The more I thought about it, the deeper the depression got. I spent hours & hours lamenting over what I can't do anymore without a walker. I had cut back shopping & going places because I depend on my walker. I felt ashamed to be labeled disabled.
Little by little I discovered that I was "doing it all wrong". Instead of concentrating on what I couldn't do--I started giving thanks for all the things I CAN still do for myself.
With the help of my fellow ataxians & their advice I've drasically changed my eating habits and faithfully take my vitamin supplements and exercise. Most places these days are handicap accessable. Some people are very nice and open doors for me. My new motto is: "As long as it's not snowing---I'm going". Yes I still hate being labeled as disabled but I'm still working, shopping and taking care of myself in my own home. And yes I gives thanks because it could be worse. And I THANK ALL OF YOU for your discussions, your stories that you share, recipes, support and inspiration.
Hi Doodlebug, I already responded to Butterflyflyaways question, but I will respond to yours also. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 10 years ago. I was 49 at the time, and am 59 years young now. No one in my family has/had this as far back as we know, except me. Guess I'm special...,ha! Seriously, I've gone through all the stages of grief and am finally at the acceptance stage, which is refreshing. That doesn't mean I'll give up or give in to my ataxia. It just means I've accepted there's no cure at this time and I'll do the best I can. I exercise for strength and balance (as a rule, I use a cane now), as my neurologist said there's been studies that show one hour of daily exercise is helpful for ataxia. He said the secret is to keep challenging myself. I do a balance exercise where I stand on one foot for as many seconds as I can, and then the other one. I keep upping the seconds. I stand at the ledge between my kitchen and family room (I do these exercises without holding on) in case I lose my balance, then I have something to grab onto. I also do an exercise where I place three small items in a triangle on the floor. I then tap each item with one foot and then the other. I do this several times. Google "The Balance Manuel" online, as you can by a balance exercise book for $19.99, written by a physical therapist. I also do floor exercises and stretches, as well as use hand weights and resistance bands. Google exercises for strength and balance to find some helpful sites. Livestrong has a good site. Even though difficult, keep moving (safely).
I take a multi-vitamin, vitamin B-12, vitamin D (1000 mg), CoQ10 (300 mg am, 300 mg pm), 2 caps fish oil, 1 cap flax oil. Of course, always check with your doctor before taking anything. Remember, ataxia doesn't define who you are as a person! My ataxia is slowly progressing, but it's different for each person how it affects them. Try to keep a positive attitude, even though it's difficult. I plan to start physical therapy again soon, as I find that helpful. Also eat as healthy as you can, lots of fresh veggies and fruit. Sorry to go on and on, just trying to be helpful. One more thing...,I live by the saying, "I may have ataxia, but ataxia doesn't have me...,ha! My best to you...,;o)
Hi Butterfly
I was diagnosed in 2010 March with C.A. In 2013 January, I was re diagnosed with Progressive Muscular Atrophy, a variant of ALS. I am now wheel chair bound outdoors and use a walker indoors. As I live in India it is not user friendly for people like me and I cannot go out as I wish. I can only go for a ride in a car. I go to,the hospital for my PT and this is only outing! I always remain cheerful,and positive and never think of the future. If you do it is painful and scary. Enjoy the TODAY and tackle events as they come and the ailment will be at bay as long as we are blessed. God will give us all the strength in times of need. Good luck and always enjoy TODAY.
Hi Nan, Kuddos for you remaining cheerful and positive, as you are so right, God does give us strength in times of need! Hugs to you..., ;o)
Hi Butterflyflyaway,
I’m new to this site and am delighted I found it. I’d love to be able to tell you not to worry about the future but concentrate on the now…but I can’t, and won’t. Myself, my brother and two sisters all have SCA 14. All at different stages along the way so I’m only too aware what my future holds. It’s scary to say the least, so I do sympathise with you. I’m going to face mine head on. For me there is no other way.
I hope you find the answers your looking for to help ease your thoughts. You can have all the help in the world but it’s only us will understand what your going through really. And we’ll be here! 
Hi Again Butterflyflyaway, Everyone is just trying to help you feel better, but, you're so right, ataxia and the future are scary! Although I tend to have a positive attitude (glass 1/2 full rather than 1/2 empty), at times I have mini-pity parties. I feel sad I have this, as well as sympathize with anyone that must deal with a neurological disorder or any devastating condition/illness (for lack of better words). Just remember, you have support and understanding of everyone on this site. You are not alone in your journey! Hugs to you..., ;o)
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Hi Butterflyaway
I too feel depressed and cannot walk unaided at all.I have gone from walking unaided to not walking in a space of two years.
I keep looking back to things I used to be able to do just months ago. I think that is the nature of progressive illnesses.
We have got worse quickly.I suppose it's difficult to understand.
I am hovering between the use it or lose it brigade,being positive and thinking that others may find me easier to transport me in a wheelchair.
I am stuck in limbo land with all these decisions flying around but I don't know what to do for the best.
I want to be an osrtich, stick my head in the sand and hope it all goes away but I can't.I get months and months of feeling like this.I have found the best thing to do is fill my mind with nice things and not negative.As someone once said on this site thing of what we can do and not what we cannot do any longer.I know all the theories but sometimes putting things into practice is hard.It is human to feel down sometimes.