This won't be unique to you. Although I was never as adventurous as you, I am slightly slower at what I used to be able to do. I do understand a lot more about my cerebral palsy now so maybe I am more aware. I am sure you will do what you can to work through what you have to. We can only move forward.

I think I should have put my post in here! I definitely have diminishing abilities.

I read about program called vestibular rehabilitation and I incorporate that into jobs around the house and wii fit (makes it more fun and gets my housework done at same time!) I still have enough movement to manage independently for getting myself out of bed, standing, managing a few steps holding onto something or someone. I do think the exercises have helped the ataxia part of my condition as they are all about balance and co-ordination.

I wrote a blog about it for further details

http://katilea.wordpress.com/2010/05/06/vestibular-rehabilitation/ (just click on title bar after reading to get back to latest post and see other pages)

Kati

I've been Klutzy my whole life; from 1st Grade through Law School; called Spastic, Spaz, Retarded; and, really believed I was. I kept falling down, sometimes couldn't run/walk like other people; but was very active as a child and adult.

Then, as I got older [I'm 72 years old] my gait worsenedâDoc called it 'gait abnormality' but did not know what caused it. I hid my gait abnormality as best I could, wanting to be 'normal'. Finally, X-Rays showed I have an avascular left hip and a lower spine scoliosis with L4 subluxed over L5 causing a levoscoliosis. He said that he thinks that I have a left hip dysplasia compounded by the levoscoliosis which throws my body out of alignment. I no longer can hide the gait abnormality and use the custom-made forearm crutches he prescribed for me. I go walking and running outside with the crutches and have done 3 eventsâthe 2009 Bisbee Great Stair Climb with 1034 steps outside, a 500 foot incline with subsequent decline and along the roads for 4.2 miles. Came in 5th in my aga group, getting 5th place award; with 3 men and 6 women coming in after me; all younger than me; and spent 5 hours on a high school track in Sierra Vista Relay For Life as member of Team Borderline Mensa; and, am planning to the the Relay For Life in Bisbee as member of Frightening Fighters: Say Boo! to Cancer Friday 21 Mayâto help raise money for the American Cancer Society. I'm aiming to do another 5 hours on the track. Hope to do the Bisbee 2010 Great Race.

I did my training at Warren Ball Park at the Copper Kings Baseball games; running up, down stairs, round about the walkways and grounds, getting things for folks at the concession stand, etc. Also train doing steps on my Alpine Climber.

All this makes me feel better; and, I hope I can spend the rest of my life in the vertical plane on the crutches. Just got custom underarm crutches so I can stand, resting on the underarm pads to steady meself whilst taking photos and videos. Also plan to use them so that I might not fall whilst squatting and resting on the grips with me armpits to cut the grass and weeds with hand tools [don't trust meself with power tools any more because of my legs and arms and hand spasms]. Besides, I find it good physical therapy for me. I also plan to use these crutches for bathing me dogs and; p'raps, to do some gardening and minor repairs.

So, although I'm an 'old people'; I believe in using what I have to the fullest, adapting to my ever-changing disabilities [I'm 'differently abled' I like to say], using as much of me as I can without having to depend upon a lot of gadgets.

So, I hesitated joining this group as I have not been diagnosed with CP. But since a lot of my symptoms from early on are so similar to many of yours; may I also joing this group, please?

It's great to hear that someone can still manage so much despite disabilities at such an age. I can't manage crutches that much but I'm just happy to be able to manage them at all for even a few steps and been able to transfer independently allows me to keep my independence.

I struggle with fatigue as my body is not used to having involuntary movements so something as simple as typing gets exhausting if not done in a way that reduces the movements so I can hit most keys first time.

I am looking for advice how to cope with these movements whilst still been able to do jobs around the house myself, as its so rare to get as an adult its difficult to find advice other than within groups for people with CP who were bron with Athetoid CP, but many seem severely affected and have never been able to type so its difficult to find advice with how to compensate for this issue.

I know there are typing sticks for typing with mouth or with hand with little mobility but I have never seen any. What I use are chopsticks for eating and for cooking as they are easier for me to handle than a fork; and, should I drop one, no big deal. It doesn't hurt me, me doggies or kittie. A fork or knife hurts when it falls onto a naked foot.

I find one useful for typing on me iPods as no way can I hit a letter I aim for; even with me little finger. I got some little covers [like the ones one uses on over-the-door clothes hooks] and place one covering the small chopstick tip so as not to damage the iPod's screen. Also I find a pair of chopsticks easier to use than a tweezers for working on the inside a computer's case, for picking up dropped screws, etc., as they are 'ESD' safe. You can get such tips from a hardware store, made out of rubber or a soft pliable plastic. For the large end, I think you might be able to find something at the hardware store to cover that, too; so, that you could put that into the hand wrap's pocket as well as your knife, fork or spoon.

Reason I go this route is because I am severely visually impaired [ophthalmologist considers me blind] and have extreme difficulty figuring out a word or a letter. Born with no peripheral vision and losing macular vision on 7th & 8th grades, with only perimacular vision remaining, which allows me to see movement and some colour but no detail nor reading except for a wee spot remaining in the perimacular vision of me left eye. It, too, is worsening with age; but since I have been adapting to it since childhood, I consider meself most fortunate to have what I still have. Additionally I am a high myope [shortsighted] and glasses no longer help.

Will write later with some of the results of the research I've done for you and me as soon as I can locate it.

I didn't think chopstick will work with iPod has it relies on skin touch. I have Blackberry storm for texting and got a iPod stylus i used foam on top to grip it but some of my skin has to be touching it or it won't work at all.

I struggle with a fork I couldn't grip and use chopsticks. I have found technology and gadgets a big help as it means I can do some things my self safely that I would have to get someone else to do otherwise.

I can just about manage Blackberry for texting with the largest keys and the word prediction but it takes me a while. It allows you to create abbreviations so I got a friend to put some in to make texting quicker but thats only thing I use it for. I am hoping to get an iPad soon with proloquo2go on as I have difficulty speaking and people who dont know me cant understand me easily.

My sight is ok luckily as I was deaf since age 16 I rely on it alot, but my coordination difficulties means I can type easier with a bigger target to aim for

I checked out Proloquo2Go and was impressed. It will be ideal for me as later in the day [like early afternoon on--I get up round 0600 hours--as I find it more difficult to talk as clearly as first thing in the morning. I say what I don't mean, mean what I don't say, stutter, stammer; &, hate to use the phone at this time.

Also, in iTunes I found a free large-button calculator by Weems which will be extremely useful to me. Was thinking that you might use 4 or more of the buttons for a remote for your telly if you can find a 3rd party programme to which work. I believe that you can use an iPod Touch for a remote [read it in one of my Mac Journals but can't locate the article now]. You might also find a programme for remote in iTunes.

I believe Apple has a regular-sized Mac type keyboard with an iPad dock you can use for imputting text. There might also be a 3rd party keyboard with such dock you can use. I would check out Macally as, for years, I have had no problem at all with any of their peripherals.

My research:
Which operating system are you running?(MacOS 10.5.8)
What version of iTunes are you using?(iTunes 9.0)
What is your age? (Over 65)
Request Type(Request an Application)
Description(required)
Large typing keys on iPad & iTouch. Using iPod Touch & iPad as TV Remote with large buttons.
Comments
This will vastly improve the life & functionality of severely visionally impaired folks and those folks with mobility abnormalities due to Cerebral Palsy & other physical disabilities causing hand tremours, hand & arm spasms, etc. Thank you.
Thank you for your feedback on iTunes.
We cannot respond to you personally, but please know that your message has been received and will be reviewed by the iTunes Team. If we need to follow up with you on your ideas for improving iTunes, we will contact you directly.
We appreciate your assistance in making iTunes better.
iTunes Teamâ¨Apple

Not only do I have leg and foot spasms--leg going off on a frolic of its own; I never know when it happens but discover that suddenly I haven't a leg to stand on-- at least not that one--but also hand and arm spasms--suddenly both hands go up at the same time to do something; and, suddenly, the only thing I accomplish is total chaos--and my inanimate objects suddenly become animated flying and tubling through the air, every which way, very noisily [which always startles me]; and, I have to go about finding the ruddy things, picking them up and putting them back into their respective places. When this happens, I find that I have gone too long without eating, worked too long on the computer, or anything else; and, the prudent thing for me to do, is to take a break 't'il I've calmed again. Especially when I almost reach the 'screaming meemies' stage and things start hurting me a lot more.

Actually, were someone to viodeo me in one of these episodes, it probably would make 'America's Funniest Videos'!

Great to hear that I'm not alone with my achy bones and sore joints Chipper.... We all seem to find another ache as we all get a little older but I think that we could possibly do something to help ourselves more. Booky is wonderful at diet and homeopathic supplements and I believe she is right with her findings, she has certainly helped me heaps... Kati is another very clever cookie with her way of finding ways of making technology work for her benefit and for time to come, as I believe that we all need to ideas for our future. ArmExtenders truly amazes me and how I could live like her at 72years, but like everyone else we are all in this together! If we can take a page from her book, we are never too old to find an easier way of doing something that challenges us. My findings with brain fatigue is an issue that I like to work on as I believe that if we can understand what causes our brain to CRASH, we may learn more strategies of coping with stress. But like everyone, we all age no matter who we are or if disabled or not and we can all help each other with our findings of ways in coping, especially with our CP.

Like we all find it a little difficult to do the things we all used to as CP is a very complex disability, and not always similar, but like most other people we seem to just carry-on, as we have too! If we can all learn from our friends in this support group I believe that we have accomplished its goal....

I have done my review and some screenshots of Proloquo2go with iPad on my blog. You can read it here:
http://katilea.wordpress.com/

Mike I agree with you wholeheartedly, but the answers to your research particularly on brain fatigue aren't out there. Maybe in ten years time we will be in a different place as far as CP knowledge is concerned and how the brain functions. For now we just have to know it happens and accept that. The difficulty is convincing others it happens! To the world we are as normal as the next person, we just look physically different.

suffer more aches and pains now than ever before, have a pelvic tilt, which causes sciatica, have tightness in my right hip. Do get more fatigue. was not told any of this would happen. just have to deal with each thing as it happens, is very much a case of being left to your devices.

Hi, don't know if this has any relevance but along with the aches and pains I'm getting a lot colder, especially in the winter.... berrrrrr..... Dose this fit a pattern? If so please let me know...! Mike: )

I think we tend to feel the cold more with age whether you have a disability or not. I have always felt but been Hypothyroid since birth, even though I was always on a high dose cos my thyroid doesnt work at all.

You also mentioned having a bad cold in your journal which won't be helping things, try and get rid of that first and see if the other things persist.

Mike!

Have always felt miserable in cold weather ever since I was a wee one. However, now that I am older and we have horrendously cold and long Winters, I have about 10% body fat [abput 105 pounds], my ecsema is always worse in Winter; I feel more and more cold each winter subse quent to the previous one. Also, my leg and hand spasms are worse and my avascular necrotic and dysplasic hips are more painful as are everything else. I expect all this to worsen as I age.

But I always am optimistic that the next Winter will be mild and short?!

Kati

Just read your post.

Yes, colds really escalate my sensitivity to the cold. But, since I have had so many pneumonias starting when I was two that I cannot even begin to count them, each one I get now last longer, hurt more and I am sicker than the time before; getting rid of them take ever so long with frequent relapses. So, I try to eat healthy , take supplements, drink more fluids and try to get enough sleep; because, I always fear that the next one will end my life; and, I really do enjoy life.