I got my passive trainer pedals last April and at the time I was:
- struggling to sit longer than an hour
- getting high levels of back pain
- struggling with control over arms due to increase in involuntary movement
- struggling with balance, standing transfers and using crutches for a few steps
After a year doing an intensive exercise routine (voluntary.. ie wii fit arms and legs moving at their own speed) and Forced (moving faster than I would be able to move them) I have had the following improvements
- I can sit most of day in manual chair and now switching back to manual with powered drive wheels for better portability and to access buses/town etc.
- significantly reduced back pain and core muscles are stronger for sitting/standing with no support behind me
- a slight improvement in balance - enough to make using crutches for a few steps easier when transferring with human assistance into families houses from cars etc.
- reduced muscle spasms from the dystonia element in arms
- better gross motor control of arms (self propelling, putting arms/legs into clothes, wii tennis etc)
- an improvement in fine motor control (fastening buttons, zips, not quite got laces but getting there)
- improved control for handwriting with both hands using Dexteria app for iPad (for improving Fine Motor Control).
- improved function in grip, working up to holding pen, stylus better for drawing with uDraw and pencils, brushes again.
- using right hand to write with again! (had bad writers cramp in it and had to re-learn to do signature with left hand)
- using rollator more around house than powerchair, either walking with it (still do better with it as a reverse walker - behind me) or sitting on seat and pushing myself from room to room with feet.
Although the study was aimed at people with Parkinsons (many have Dystonia as part of it) it did show an improvement in tremor for some people so maybe worth investigating if you have tremor as part of the Ataxia? .. just cos scientist haven't had opportunity to see if it works for Ataxia too, or certain types doesn't mean it couldn't.
It may have worked for me cos I never developed the tremor and my involuntary movements were dystonia based? .. They haven't vanished completely, (and probably never will) but they have improved enough for me to now think I may be able to stay living independant with the help of a Canine Partner, instead of needing human PA's to come in and dress me.
I'm applying for a Dual Skilled Dog trained jointly by Hearing Dogs for the Deaf and Canine Partners to alert me to household sounds, public fire alarms and help me with daily living skills and jobs around the house. Hopefully he/she will arrive before my current dog (age 11) is unable to manage helping me or goes deaf herself and can't alert me to smoke alarm, doorbell etc.
I'm glad I gave it a go, I will be returning my bulky NHS chair once I get the powerdrive wheels on manual chair and keeping a scooter for dog walking.
I've moved onto using the Passive trainer pedals directly on arms too and my next goals are:
- to improve control over arms further
- to improve gripping further
- to improve balance further
- with end result been to improve walking with crutches further by the time I have my next dog.
Well done Kati .Good luck with the new doggy when you get it.
Hi, I have Ataxia, treatable with Diamox - it's caused by a Chiari. However, prior to being treated, just walking from the car to the front door was a great feat...and the forests that I once hiked became a scarey place, due to the uneven surfaces. I knew I had to exercise, because my core muscles were fading. I started swimming. It was a sore, painful process. I had lost a lot of coordination skills (touching finger to nose, clapping hands, etc) so it was a slow process. I was determined to try and regain the muscle mass I needed. So my first swim was only 3 laps. A year later I now swim 22 laps (1/2 mile) 4-5 times per week. The exercise helps battles the depression/the blues that you get when you have ataxia. Again, this is to build core muscles, not for cardio training...that is a secondary benefit. If you can get yourself into water, do it. It was a major turning point in me taking control of my body again.
Used to go Swimming but don't like getting dressed and undressed.Don't like uneven surfaces at all now.
Hi Marie, I use to dread changing too, I would put my suit on at home, then wear a sun dress, or sweat pants over it to the gym. My husband use to have to help me with the socks, etc. so I know it is frustrating. Even though I have almost all my balance back, I am still scared of uneven surfaces. I have something called Ehlers Danlos, which causes me to sprain my ankles every easily...this is also what caused my Chiari to form (my cerebellum changes position and blocks the spinal fluid to the brain). Last time I fell just walking across the yard..and ended up in the ER. My ankle swoll to the size of a tangerine. The swimming is good. A secondary exercising machine is the eliptical, but depending on your coordination skills/problems this may not be a good idea. All I know is I was tired of sitting on my butt and putting weight on, and my arms getting weaker...I do not like depending on people to do things for me, like opening jars.
Having had Depreesion myself I used to go Walking to stave it off.Now that is no longer an option I think anything which motivates us to get on and do something is good.It takes me ages to get ready for the scooter;coat,gloves dog, lead,dog biscuits ,mobile phone,key etc but its worth it when i get out.I lovelooking at Nature changing.Now I do it from a scooter instead of walking.I love going out in the afternoons whereas I used to dread it with the rollator as i got stuck once too often and got told off for going in inaccessible places.I now go exploring all over the place and I don;t dread hills anyore as the rollator used to go off without me.I think allexerciseis good.Will prob go swimming again when it gets warmer.My new pool has a non slip surface which makes all the difference.
You guys are so inspirational - the proof of the pudding etc ... lol.. seriously, I am very impressed and so encouraged to get on and do something myself. Thank you for sharing.
Take care, Patsy x
you just have to keep moving..and make ataxia live with you, not with it. Here is a short inspirational story - My husband's grandpa use to work in the coal mines of PA. He came down with black lung disease...he had to stop working in the mines, so he went and worked down the road in a saw mill, only to lose one of his arms in a saw mill accident. That man continued on working, and even built a house with one arm....only to have lightening strike the house and burn the house to the ground . But he accepted what life gave him, and just continued on with the best smile and hope anyone I ever knew had. Never lose hope in life, and faith in yourself, and what you can accomplish. Remember you are alive...live.
I got to use the passive trainer for a few weeks. Not long enough to really help. The place I was doing physical therapy I was no longer able to continuing going to, so no more for me. I would like to find out how I can get one at home! I'm guessing it's a doctors Rx?
I bought mine off the internet. There's different levels the ones that just assist for those who have movement in legs can be bought for around £200. I got mine for £138 but I can't find the site again, its not coming up.
The ones for higher level spinal injuries for those who are actually paralysed (ie no movement, feeling or control) usually cost in the region of £5,000 as you're buying a much more specialised device.
I could do a very jerky slow pedalling motion on a regular non-motorised ones, if you can do that than maybe one of the cheaper ones will help as its just helps your legs move a little faster and in a more fluid motion.
When I first got mine I had to use the leg splints in trainers that fit very tightly under the feet straps to keep them on and after first 15 mins when cycle would stop my legs would shake vigorously from muscle spams... now I do it for an hour whilst watching telly and get no shaking when pedals stop,. I do it with just socks on and can keep my feet on the pedals.
I have tried manual pedalling but it aggravates my sural nerve
That is amazing! Such an inspiration. WELL DONE! and good luck with the dog.
Love Lit X
This is link to one like mine:
This model is NOT suitable for those totally paralysed. If you can move manual pedals but are just very slow and jerky this model may work for you, as it will allow you to pedal in a more fluid motion and faster than you would be able to yourself (so making it 'forced exercise')
These are more expensive models for those who don't have enough voluntary control of legs to get them on pedals and move them at all:
Both Activcycle and Theracycles can be bought in UK and US.
Wow! This is a reasonable priced option! I think I'll get this. I'm hopeful it will help get me back on my feet during an episode.
good luck Julie, hope it works for you, please come back and let us know if it does!
I just keep moving even though I'm slow. I do the exercises my physical therapist recommended although I don't attend physical therapy at this time. I try to have a positive attitude about my ataxia because I'm stuck with this condition...ha! I control it, it doesn't control me! There are things I can't do anymore physically, so I continue to do what I can. I have pity-parties and get down sometimes but I try to move past this and count my blessings. I think each of us has special gifts and we can learn from each other! Kati you are truly an inspiration...good for you!!!
Kati inspired me to get wii fit and then wii fit plus and I am forever grateful to her for this .. I try to exercise with it every morning but have to 'share' tv with hubby!!
We are moving home Tuesday week - 8th May and I hope to have my own 'screen' in bedroom so that I have no excuse.
Dont worry if you dont see me online for a few days - we will be without broadband until at least 11th May but.. there will be wireless connection in the Orangery. Yes, ~The Orangery ! That's the name of the community lounge which used to be part of a stately home.
Check it out on this link
Keep smiling, Patsy x