I have problems with my left side right now from ataxia. My left foot just doesn't seem stable at times and I am concerned that I am going to fall. It is very painful at times also. I keep asking therapy people if there is some type of Velcro wrap or something I can do to stabilized my foot a little better but they are no help. Anyone else had issues with foot ankle issue? Did you find anything to stabilize ankle/foot to help to be able to walk better? Therapist don't seem to get it that I have a problem with this. I've been telling them for weeks I am limping on the left side and it is getting painful in my foot. They don't know what SCA is. Sometimes I think they think I am just nuts or something. I have made an appointment next week with neurologist and Primary Care Dr. and maybe between the two of them someone can help me with this issue. I don't know if I need to go to an orthopedic person or what I need to do. I am kinda on my own with this illness and no one has really given me any information much on what to expect with this. I have read a lot of information on here and glad this website is here. At least I don't feel like I am on an island by myself now.
I had similar problem with right foot.. I had major surgery so straighten foot and now have more pain than before. It doesnt help with lifting it either!!
I did used to attend paediatrics [I think that's what it was called] and they had orthotic supports made. These were difficult to find shoes for and physio said I was 'safer' walking without them.. I use memory foam insoles now and baclofen helps with the nerve pain [sural nerve] which shoots up back of leg from heel to bottom.
You have my sympathy with 'attitude' of neurologist. where do you live? Maybe someone on here could recommend a neurologist who specialises in ataxia.
x
I'm glad you have doctors appointments.
Push them till you get what you need. Even if you don't know what it is that's going on, they should be able to figure out something and help you. Perhaps writing down what your experiencing will help the doctors to understand. Write down symptoms and days you're experiencing the symptoms, how long it's been happening etc. They need facts. Describe how it feels in terms doctors can understand. Then ask them, "What is causing this and what can you do to help me?"
I glad you have found this group. We are here for you!
PG, try to get on ataxia.org. Under “Resources” you will find a list of neurologists who works either in Ataxia clinics or what they call movement disorders clinics near you. They should be able to recommend a knowledgeable therapsist to help you and find out if your foot/ankle problem is related with ataxia.
If there isn’t any close enough to you, contact them by email and ask them how you could find one. They are very nice and will respond very quickly.
Gook luck to you
Thanks for the advice everyone. Went to physical therapist today and he said I am not walking correctly on my foot. Something about heel first, outside of foot next and ball of foot next ??? He suggested I go to one of the athletic shoe stores and have them do an evaluation and help me find a shoe that will "support my foot" the correct way so I can walk better. Not sure about this....
Hello PG, if I didn't know better I would think you lived in the same town as me. It is awful when Drs etc don't know anything about our illness. Can you print out about this illness and show it to your therapist? It must be awful for you being on your own through this. I am sick of these Drs here. I am waiting for my cousin to ring me tonight. She is making me an appointment to see one of the Drs where she lives. That is 300 kilometre's from here. It is going to cost me heaps, petrol. motel.(she only lives in a 1 bedroom flat) pay the Dr..I just hope it will be worth it. Before I found this site (and the CIDP site) I felt I was on my own in the middle of the ocean. I have learnt a lot due to these 2 sites.I have had depression since my teens. I thought I was mad until I read that it is part of our illness. I wish you all the best with your Neuro next week.Shirl
It's amazing to me that we live in a time when people can go into outer space but there is little known about this illness. I took therapist some info today but he didn't seem to be too interested but I didn't give up. I think he is trying but this is something he hasn't seen either. I actually live in the US in Texas. I guess it doesn't matter where we live seems like we all are running into some of the same issues trying to find answers and help. I still feel like I'm on an island here in Texas but at least this group helps me. I have had depression for years also. It was quite frustrating because I felt like something was wrong but the doctor I use to go to just passed everything off and basically humored me and did not take me serious. He is no longer my doctor. I have a physician's assistant that has taken care of me and tried to help me more than he ever did.
If you have found some sites that have good information could you pass them on to me? Thanks
bron said:
Hello PG, if I didn't know better I would think you lived in the same town as me. It is awful when Drs etc don't know anything about our illness. Can you print out about this illness and show it to your therapist? It must be awful for you being on your own through this. I am sick of these Drs here. I am waiting for my cousin to ring me tonight. She is making me an appointment to see one of the Drs where she lives. That is 300 kilometre's from here. It is going to cost me heaps, petrol. motel.(she only lives in a 1 bedroom flat) pay the Dr..I just hope it will be worth it. Before I found this site (and the CIDP site) I felt I was on my own in the middle of the ocean. I have learnt a lot due to these 2 sites.I have had depression since my teens. I thought I was mad until I read that it is part of our illness. I wish you all the best with your Neuro next week.Shirl
I have trouble with my right leg and foot not lifting. I constantly drag that foot when walking. The problem, as I understand it, is in my brain and not my leg or foot. This is because of the Ataxia. I constantly walk with a limp on my right side. I am in no pain yet so I can't comment on that. Good luck.
Ben went to a athletic shoe place per therapy instructions. Called Fleet Feet. Told them my left foot collapsing on arch side of foot. She had me get on treadmill on very slow n walk. She confirmed issue n brought out three different shoes that had support for arch area. I tried all three on walked around store n tried on treadmill so she could see if foot going correctly. Found one that worked for me. Helped with balance too. I agree with brain foot connection I have to look at feet to make sure left one is going correctly I practice walking in my narrow kitchen so I can hang on if necessary. Therapist has me walking forward n backward. I watched my feet a lot at first but am practicing looking forward n am getting better at it. Can’t wait to try this with shoes that support my foot. I hope u can find something that helps u too.
Hi,
I have a similar problem with my ankles, my right ankle is due to an old injury which also aches (like toothache). My physio gave me AFOs to try and the do provide some stability. The AFOs are not huge they are actually quite thin, made of plastic and neoprene with Velcro fastenings. I have also been given a AirCast brace/wrap which is slightly thicker than the AFOs, this too helps a lot. The compression helps with the ache and they help stability too. I dealt with my Neuro Physio, a Podiatrist and an appliances person. Any of these should be-able to help. Good luck
http://www.runningnuts.com/shop/running-accessories/all-supports/aircast-airsport-ankle-brace-1095687.html?gclid=CMeE2Inh0LoCFWbMtAodtXsAvQ - this is very like the AirCast I have. It a little bulky for some shoes but works ok, you can drive etc with it.
http://bocamedicalsupply.com/online-store/product.php?catId=149&prodId=656 - very similar to the AFOs I have. Again you can do anything you normally do while wearing them.
Also, google search:
*New Balance, their balance trainers can help.
*Motion Theraputics. Do a balance vest which have been proven to help Ataxia patients and others.
Thank you very much. I am open to all suggestions.
Taryn Cotton said:
http://www.runningnuts.com/shop/running-accessories/all-supports/ai... - this is very like the AirCast I have. It a little bulky for some shoes but works ok, you can drive etc with it.
http://bocamedicalsupply.com/online-store/product.php?catId=149&... - very similar to the AFOs I have. Again you can do anything you normally do while wearing them.
Also, google search:
*New Balance, their balance trainers can help.
*Motion Theraputics. Do a balance vest which have been proven to help Ataxia patients and others.