I don't know exactly how to describe it but it feels like someone has a pair of pliers or a clamp on my foot in front of my heel and they are squeezing it tight on my foot. My foot looks different than it use to also. Anyone else have something like this?
No. I dont have this sensation at all. Instead, I have constant dizziness, lack of precision (like putting a key in a keyhole takes me several attempts) and a general weakness in my legs which occurs after I stand too long on them; or walk too much. The weakness turns into unsteadiness, also my speaking voice is lower and my handwriting is crummy. A neuro once told me: Not everything can be blamed on ataxia so stop looking in the mirror all day. But she also said, this illness/condition can develop unpredictably, so be on the lookout. Typical conflicting advice. BTW, I have discovered lately that wearing a sweater, wrapped snugly around my waist, can be helpful. Still jealous of all (most) of humanity that seems not to have this or even know about it. Really the last page in the bio textbook, next to "the Weirdest Diseases in the World." N
I also believe that not all our problems come from ataxia, although a lot of them could be indirectly related to ataxia.
In the case of your ankle, since you mentioned earlier that you were walking with a limp, you may have developed some bad walking habit to compensate for your lack of balance. This could cause tendons, muscles or nerves problems.
Check with a therapist to figure out if your pain could come from walking “funny”, or with your internist.
I never had ankle problem, but did have some ache in one hip. Walking with longer steps solved everything, although I too have a tendency to look “limpy”, especially when I am tired.
We have to accept that we are wobbly people 
Neta, do not be jealous of people who do not have ataxia. You never know what they are dealing with, not just physically, but mentally or emotionally …
I am relentlessly jealous-- not that it helps. Just when things were lookjing up for me, when I got out of a bad marriage and fell into a good one-- when I got a contract to write a book wham!- here comes ataxia!!!!!
It's true, I dont know what others are dealing with but everyone seems fine to me. True, Nan (not her real name) has a bad back; the so-and-so's have a career-less, divorced daughter with two kids. Peter had stomach cancer (he has been in remission for almost ten years); Alice had cancer cells in her uterus---which were removed;and Gerald finally got a hearing aide..But these are all "normal" problems not ATAXIA!!!!
I also remember that PG wrote about a limp. Besides a visit or a phonecall to the neuro, I would suggest a good foot dr. such as an orthopedist or podiatrist to see if its brain related or just a foot thing. For example, I have a painful bunion on my right big toe but I am sure it's not brain related and I have an appt with a podiatrist.
Just wondering. are you into the weighted vests?If you are,is there a vest-person in NYC or on the East Coast??? Good luck to all. N
Cicina said:
I also believe that not all our problems come from ataxia, although a lot of them could be indirectly related to ataxia.
In the case of your ankle, since you mentioned earlier that you were walking with a limp, you may have developed some bad walking habit to compensate for your lack of balance. This could cause tendons, muscles or nerves problems.
Check with a therapist to figure out if your pain could come from walking "funny", or with your internist.
I never had ankle problem, but did have some ache in one hip. Walking with longer steps solved everything, although I too have a tendency to look "limpy", especially when I am tired.
We have to accept that we are wobbly people ;-)
Neta, do not be jealous of people who do not have ataxia. You never know what they are dealing with, not just physically, but mentally or emotionally ....
http://www.motiontherapeutics.com/our-products/bw300-versatile-vest/
Check this website Neta.
Under “Products and availability”, there is a map of the States with indication of where the vest is available.
I contacted them a while back as there is none close to our area; they were very nice and said they are progressively expanding their territory of availability.
You need to try it on with a trained therapist who will know where the weighs need to be paced, according to your own needs.
Good luck to you and hang in there:-) try to live life one day at a time. Don’t look back ( too sad ) and don’t look ahead ( too uncertain). Enjoy the moment.
Thanks for it all. N (I will be in the USA hopefully in early December.) Good luck to all.
Cicina said:
http://www.motiontherapeutics.com/our-products/bw300-versatile-vest/
Check this website Neta.
Under "Products and availability", there is a map of the States with indication of where the vest is available.
I contacted them a while back as there is none close to our area; they were very nice and said they are progressively expanding their territory of availability.
You need to try it on with a trained therapist who will know where the weighs need to be paced, according to your own needs.
Good luck to you and hang in there:-) try to live life one day at a time. Don't look back ( too sad ) and don't look ahead ( too uncertain). Enjoy the moment.
Thanks for everything; the wishes, the link and the advice.
Cicina said:
http://www.motiontherapeutics.com/our-products/bw300-versatile-vest/
Check this website Neta.
Under "Products and availability", there is a map of the States with indication of where the vest is available.
I contacted them a while back as there is none close to our area; they were very nice and said they are progressively expanding their territory of availability.
You need to try it on with a trained therapist who will know where the weighs need to be paced, according to your own needs.
Good luck to you and hang in there:-) try to live life one day at a time. Don't look back ( too sad ) and don't look ahead ( too uncertain). Enjoy the moment.
I have a BalanceWear vest, and find it very helpful. I also think tying a sweater around your waist is ingenious, Neta! Core strength is SO IMPORTANT with ataxia! I also find it helpful to put something around my waist, and will use an adjustable waist band sometimes...,;o)
Haven't tried the vest yet. http://www.motiontherapeutics.com/our-products/bw300-versatile-vest/
neta said:
I am relentlessly jealous-- not that it helps. Just when things were lookjing up for me, when I got out of a bad marriage and fell into a good one-- when I got a contract to write a book wham!- here comes ataxia!!!!!
It's true, I dont know what others are dealing with but everyone seems fine to me. True, Nan (not her real name) has a bad back; the so-and-so's have a career-less, divorced daughter with two kids. Peter had stomach cancer (he has been in remission for almost ten years); Alice had cancer cells in her uterus---which were removed;and Gerald finally got a hearing aide..But these are all "normal" problems not ATAXIA!!!!
I also remember that PG wrote about a limp. Besides a visit or a phonecall to the neuro, I would suggest a good foot dr. such as an orthopedist or podiatrist to see if its brain related or just a foot thing. For example, I have a painful bunion on my right big toe but I am sure it's not brain related and I have an appt with a podiatrist.
Just wondering. are you into the weighted vests?If you are,is there a vest-person in NYC or on the East Coast??? Good luck to all. N
Cicina said:I also believe that not all our problems come from ataxia, although a lot of them could be indirectly related to ataxia.
In the case of your ankle, since you mentioned earlier that you were walking with a limp, you may have developed some bad walking habit to compensate for your lack of balance. This could cause tendons, muscles or nerves problems.
Check with a therapist to figure out if your pain could come from walking "funny", or with your internist.
I never had ankle problem, but did have some ache in one hip. Walking with longer steps solved everything, although I too have a tendency to look "limpy", especially when I am tired.
We have to accept that we are wobbly people ;-)
Neta, do not be jealous of people who do not have ataxia. You never know what they are dealing with, not just physically, but mentally or emotionally ....
I have fasciitis--bone spur?- in my left foot, it occurred and was diagnosed way before the Ataxia set in. PCP gave me exercises to help it and also suggested an arch support. She prescribed meloxicam as needed when favoring the heel affected my knee. As said everything is not Ataxia related. I also have bursitis in my right hip. The only connection I see in that to Ataxia is that when I worked out at Curves the bursitis didn't hurt and neither did my tennis elbow. Both conditions greatly pre-dated the ataxia. The exercise strengthened the muscles. Since Ataxia I've had to give up Curves and the hip has started hurting again. Wish I could figure out what to do on my own to help it. I do ride a stationary bike a short time somedays--10 to15 mins. Seems to help some but barametic pressure enters in too. Just know lots of things, but not everthing, go with Ataxia. I get what hubby call PMS (Poor Me Syndrome) every now and then about the ataxia- especially when it seems to be getting worse and/or I think things could be arranged better here to make it easier to function. FRUSTRATION!
I am impressed by the vests, and wish I could try one. A friend who is an occupational therapist working with public school children says they use them somehow with autistic children. She was not familiar with the use of them for balance. Sure looks good though.
Hi Neta,
I too have Ataxia , But I am so very thankful to God for every breath I take.
When I am having a bad ... day. I focus on some of people without arms,
especially those in horribly brutal country's . I have so very much to thankful.
I have lived a fun and productive life. How about all the children right here in
our own country (who never will get a chance live to adulthood ) due to Cancers
endless and hopeless children , or young mothers , given a short time to live .
When thinking of others and being thankful for all we do have , our pains and
disabilities are less. It also helps to accept our struggles and limitations . I offer
mine in thanksgiving and reparation for my failings etc.----this gives my sufferings
a very useful purpose. Good Luck My Dear
hugs
Well said, Lassie-Elena !!! Mary-Elena! You're perspective is brilliant and so, so true! ;o)
I hope one day I can try the vest.
granny h said:
I have fasciitis--bone spur?- in my left foot, it occurred and was diagnosed way before the Ataxia set in. PCP gave me exercises to help it and also suggested an arch support. She prescribed meloxicam as needed when favoring the heel affected my knee. As said everything is not Ataxia related. I also have bursitis in my right hip. The only connection I see in that to Ataxia is that when I worked out at Curves the bursitis didn't hurt and neither did my tennis elbow. Both conditions greatly pre-dated the ataxia. The exercise strengthened the muscles. Since Ataxia I've had to give up Curves and the hip has started hurting again. Wish I could figure out what to do on my own to help it. I do ride a stationary bike a short time somedays--10 to15 mins. Seems to help some but barametic pressure enters in too. Just know lots of things, but not everthing, go with Ataxia. I get what hubby call PMS (Poor Me Syndrome) every now and then about the ataxia- especially when it seems to be getting worse and/or I think things could be arranged better here to make it easier to function. FRUSTRATION!
I am impressed by the vests, and wish I could try one. A friend who is an occupational therapist working with public school children says they use them somehow with autistic children. She was not familiar with the use of them for balance. Sure looks good though.
Sorry to bug you all but I'm asking questions about different things because there is no one else to ask. This is all new to me. I think I have had symptoms for years but no one could figure it out until recently. I just thought I was getting older and that must be what happens when you get older. I try not think about it too much but I am trying to figure out what is ataxia issues and what's not. Thanks for the advice.
No apologies necessary, PG. This is what support groups are for: sharing experiences, crying on each other’s shoulders, venting and laughing together. Ask any question you want, there will always been someone to answer you, reassure you, and advise you. But remember always to check with your doctor as this is not a medical site, just an experience sharing place, where only people who have the same problem you have can fully understand what you are going through.
Remember, you are not alone. We understand.
Take care and keep smiling.
Thank you very much. I really appreciate the info and reassurance.
Cicina said:
No apologies necessary, PG. This is what support groups are for: sharing experiences, crying on each other's shoulders, venting and laughing together. Ask any question you want, there will always been someone to answer you, reassure you, and advise you. But remember always to check with your doctor as this is not a medical site, just an experience sharing place, where only people who have the same problem you have can fully understand what you are going through.
Remember, you are not alone. We understand.
Take care and keep smiling.
I agree with all that Cicina said! Ask the new pt you see about you're foot/ankle PG! Hopefully they'll have some suggestions for you..., ;o)
Hi. I have SCA6 and occasionally get chronic pain in my feet, only usually one at a time thankfully, but they kind of go into spasm and they look like a kind of spastic spasm, horrible word I know. I asked my physio and she told me that it was more than likely the muscles and tendons constricting due to the fact we have to work harder when walking. Not nice I know as it is very painful.
I would like very much to try a vest but they are only available in America but may be coming here to the U.K next year. I emailed the company after I watched the films on U Tube and if it’s real they have amazing results. Not one of us knows our futures or whether they are Ataxia related problems. I have been to that dark place and it nearly consumed me. We have to get on with it and live each day as it comes. At present I am in bed. Every bone aches, I’m having tremors, sweats, upset stomach, I can’t afford to be off sick as I still work and have a family to support however; my body can only do so much as can yours. I don’t know which part is Ataxia or virus or Flu so I’ll just stay here and relax until my body allows me to get up.
Stay strong. Hugs to you x
Me again!
First, CMT is Charcot Marie Tooth, a neuropathy in the feet, lower legs, and hands. It is characterized by severe nerve pain (hot, cold, electrical) which is often worse at night. The feet take on an unusual look - high arches and hammer toes. The muscles in the lower leg also start to atrophy causing a champaign bottle leg shape. Because the feeling isn't right in your feet, you fall and that leads to ankle problems.
I was diagnosed with CMT about 10 years ago. I had a genetic test. I showed genetic damage but not an identified CMT (there are MANY). The problem is it's impossible to tell where one of these things starts and another begins. As I said, I have swallowing issues and I'm very unstable. My gait is ataxic. I've been very awkward all my life. In addition to many sprained ankles, I have had three meniscus tears repaired in my left knee.
Friday, I was told by a podiatrist who helps with CMT bracing that I didn't need anything. He said my CMT symptoms were far less concerning than the ataxia symptoms.
So I start back through the merry go round again on Friday! What the heck; we get to spend a couple of days in Atlanta watching good movies and eating great food! There are worse fates.
Jim
Sorry you are sick. You have enough to deal with without that for sure. Take care and hope you feel better soon.
Beverley said:
Hi. I have SCA6 and occasionally get chronic pain in my feet, only usually one at a time thankfully, but they kind of go into spasm and they look like a kind of spastic spasm, horrible word I know. I asked my physio and she told me that it was more than likely the muscles and tendons constricting due to the fact we have to work harder when walking. Not nice I know as it is very painful.
I would like very much to try a vest but they are only available in America but may be coming here to the U.K next year. I emailed the company after I watched the films on U Tube and if it's real they have amazing results. Not one of us knows our futures or whether they are Ataxia related problems. I have been to that dark place and it nearly consumed me. We have to get on with it and live each day as it comes. At present I am in bed. Every bone aches, I'm having tremors, sweats, upset stomach, I can't afford to be off sick as I still work and have a family to support however; my body can only do so much as can yours. I don't know which part is Ataxia or virus or Flu so I'll just stay here and relax until my body allows me to get up.
Stay strong. Hugs to you x