Afo’s and physical therapy

Stacey I would ask for PT for sure you, if you are still having problems. If you still have problems with your hands and doing tasks that you used to do before with out any problem I would say you might want to get OT also. They will be able to work with you over a few weeks and watch your progress as they give you hints on what to watch for. Sometimes it is mind over matter and you just are not concentrating like you should be. You might be taking too long of a stride or too tiny of a step. I like to take a cane when I know I might have to wait in line or I have to walk farther than usual and I know I might get tired. For example, a mall where there is no shopping carts or where there is going to be steps with no railing and I am by myself. Rehab can also see if you need to get the AFO but does not sound like you would be using them very long! Keep up the good work!

Stacey,

My best friend had GBS in 1987 (two years after me – we became friends afterwards). She unfortunately always had foot drop and could never really walk properly. She uses the crutches that have a ‘cuff’ around your arm, just below your elbow, with a handle for her hands (I’m sure you know which ones i mean). This for her was less cumbersome than a walker, and far more effective than a stick. When she is at home then she normally puts them to one side and walks around holding onto the wall when necessary. They are just part of her life ….. Also, she really should wear AFO’s (ones that are designed to go beyond the knee for knee support too), but hasnt because the ones she got hurt her – as a result, her feet and knees have become worse over the years – in fact her legs bend the other way at her knees when she stands, and we are all getting rather concerned. I havent said that to scare you at all, just thought I would mention it to you so that when you go to the PT / OT or doc, you can discuss this with them as it obviously has become worse for you to have noticed.
I think nowadays they make AFO’s out of really ‘comfortable’ material and they dont hurt like the hard plastic we had in the 80’s 😉 . If memory serves, one of our members ‘bad mommy’ spoke about her AFO’s and said they were very comfortable (I think it was last year, or the year before). Maybe you could pm her and ask her what type etc she has, however I’m sure there are many members who have good suggestions.

Stacey,

As I have said in many posts before, I hate taking meds …. and I HATE ‘pushing’ them too …. however, it is worth taking if it will help with the quality of your life. The biggest reason for starting to take mine was my family. I didnt want to be the mommy who couldnt do anything, who was always sleeping and always ‘grumpy’ because of depression and pain. Make no mistake, that does still happen, only less frequently 😀 . It really has made the world of difference to me Stacey, it will hopefully help you too.

Google – Insightful Products and check out the Blaze or the Steo Smart Braces. I wear one on each ankle everday and they are the best I have found in 10 years. Hope it helps. You will need a prescription for a podiatrist to get them but they will send your Dr. everything in a kit.

Michael

Stacey, I can feel with you. This thing can be really scary and frustrating when you can’t do what you used to and don’t know where you are headed with it.

My neuro mentioned PT over a year ago but I’ve ignored it until now. I guess I didn’t think I needed it plus I shy away from exercising. Now since I had to spend six weeks in a wheelchair because of my fractured knee, I was so weak afterwards that I finally agreed. I started PT two weeks ago and I am glad I did. A lot of what we do has really less to do with the knee than with problems caused by the CIDP, like balance, the right way to walk and overall strengthening. The homework right now consist of 9 fairly easy exercises I can do in 20 minutes. I can send you a copy of the instruction sheets if you give me your e-mail (don’t post it, send me a personal message, this avoids spam). During the half-hour sessions he is pushing me to do more and more. Last week he put me on an exercise bike for a few minutes. I was really scared but did fine, pedalling was easy at low resistance settings. I was so surprised i could do it. This morning he said:”OK, I want you to use your cane instead of the walker and walk with me outside around the parking lot.” He walked next to me holding on to a belt he had strapped around my waist. It was pretty tiring and I felt scared at times, esp. when I had to walk down some steps or step up the curb.

Every situation is different and they adjust what they have you do based on what you need and can do. I think it’s worthwhile.

Take care

Hi Stacey, I live about 2 2-1/2 hours north of Omaha in South Yankton Ne. right near the bridge into Yankton SD. Anyway, I am been bouncing around to different doctors. I finally found a primary who would really listen. The Neuro I was seeing in Norfolk was injecting me with steroids, putting them in my IVIG and prescribing Prednison and Cellcept. I have been feeling awful in every way possible since then. The Dr. today took me off the Cellcept and weaning me off Pred. since you can’t go cold turkey. And I am seeing a new Neuro. when I can get an appointment. I am going to be 68 so I dont exercise too much and enjoy by power chair. However, PLEASE be very careful with that dropfoot. I fell twice because off it. I now have it in both feet and only walk with my afo’s and a walker. Someone on here said, when you are sitting write the alphabet with you toes. Good exercise.
I heard there is a terrific Lady Neurologist at Creighton Univ. and she does out-clinics. I did not get her name, but you may do some looking. I get IVIG every 2 months and take Lyrica and Cymbalta for pain in my legs. I did PT and OT and got the strength back in my upper legs, but nothing below the knees. Keep fighting and maybe looking into Creighton Univ. Neuro. Dept. I wish you and you family the very best–Cymbalta really helps with that depression. Get Better Slowly.
PS–you can tell I am over medicated, thoughts running everywhichway!!!

Stacey, just reread your post and wanted to add another comment:

I’ve been on Prozac for many years because I used to wake up in the middle of the night with terrible feelings of anxiety. This was before CIDP. I don’t care that they call it “the happy pill.” Now, it helps me deal with my situation better and I only once in a while feel down. It does not – like some people claim – make me lose my normal range of emotions. I can get excited, happy, angry or whatever. I don’t give up and try to push myself – which makes me feel good. I also have a good sense of humor – most of the time.

Carol is in Oklahoma to visit her mom for a week and I am alone in the house. I made some plans for what I wanted to accomplish while she was gone. One was to replace one of the sprinkler heads. She does most of the work outside and I wanted to contribute because I feel bad not being able to help. A little while ago I went outside with my walker to do it. Our lawn in the back is sloped a lot and I had a heck of a time getting to the far side of the fence. That old sprinkler head wouldn’t budge because my hands aren’t strong enough any more. So I went back in to rest for a while and try again later. I finally succeeded. I still have to test it. Water may squirt out all over the place because I didn’t screw it in tight enough. But not today.

I don’t think without the Prozac I would do crazy things like that.

unless they ask for it. That’s been my experience…I could tell after about 6 months that I was regaining some muscle strength but losing the muscle tone that’s needed to keep the strength and gradually gain back more.

Neuros really don’t think about it as they aren’t focusing on your whole overall body. I have never been denied the PT as my insurance allows for it. Just be sure that the ‘orders’ include a PLAN for a Home Program…meaning exercises you can do at home easily, safely and with little equipment [such as a ‘band’]. The usual program is 4-6 weeks, 3 times a week…I prefer to ‘stretch’ it out by appointments 2 times a week for longer =same number of appointments. I find I can do more ‘homework’ in-between and build myself up better, plus being corrected if I start to do some exercises wrong.. If you bring home good exercises to do, this gives you time to not only do them, but do them better…

My programs included, walking better, leg, ankle and foot strengthening and building up hand, wrist and arm strength as well. A good therapist can help you be more whole and stable all around.

The only support I ever use is called ‘vetwrap’ – an animal version of those elastic wraps that are disposable – at half the cost. When I had foot issues a while ago, my podiatrist gave me some ‘pre-wrap’ a soft liner as the wrap itself can rub a bit. I find that it can give me lots of support, breathes, does not rub raw, and is flexible… plus since it’s self-sticking, you can adjust it if wrapped too tight. Always do it looser than you think, then snug it up with practice. If you can’t find pre-wrap, use an old sock under the wrap -our skins tend to be more tender than most folks.

I do hope this helps

unless they ask for it. That’s been my experience…I could tell after about 6 months that I was regaining some muscle strength but losing the muscle tone that’s needed to keep the strength and gradually gain back more.

Neuros really don’t think about it as they aren’t focusing on your whole overall body. I have never been denied the PT as my insurance allows for it. Just be sure that the ‘orders’ include a PLAN for a Home Program…meaning exercises you can do at home easily, safely and with little equipment [such as a ‘band’]. The usual program is 4-6 weeks, 3 times a week…I prefer to ‘stretch’ it out by appointments 2 times a week for longer =same number of appointments. I find I can do more ‘homework’ in-between and build myself up better, plus being corrected if I start to do some exercises wrong.. If you bring home good exercises to do, this gives you time to not only do them, but do them better…

My programs included, walking better, leg, ankle and foot strengthening and building up hand, wrist and arm strength as well. A good therapist can help you be more whole and stable all around.

The only support I ever use is called ‘vetwrap’ – an animal version of those elastic wraps that are disposable – at half the cost. When I had foot issues a while ago, my podiatrist gave me some ‘pre-wrap’ a soft liner as the wrap itself can rub a bit. I find that it can give me lots of support, breathes, does not rub raw, and is flexible… plus since it’s self-sticking, you can adjust it if wrapped too tight. Always do it looser than you think, then snug it up with practice. If you can’t find pre-wrap, use an old sock under the wrap -our skins tend to be more tender than most folks.

I do hope this helps

STACEY,
I’m glad you mentioned the things that are bothering you. When I fell again in the medical center where my doctor’s office was in MD before I moved to IL, they coded me! When my Dr. arrived, she said that it was time for me to get AFO’s. I haven’t fallen since and wear them almost constantly. Mine were customed- formed and have only needed adjustment once in two years.

I am in my second round of PT and had to ask for it from the neuro. My primary had prescribed water-therapy and I found that very helpful. It’s important not to over-extend in exercise or it can be anti-productive.

Has your neuro ever prescribed plasmapheresis? If the IVIG and steroids are not working, the blood/albumin exchange might be helpful. It was the first round of treatment for me and provided some improvement in strength.

It sounds to me like you might want to explore another neuro. Since our disease is rare, many aren’t much acquainted with what is best.

I wish you my best.
Pat

Stacey, I didn’t read your last post before I emailed the exercises. I am sure the neuro can prescribe the “happy pills” if you make a good case for it. I am sticking with Prozac because there is a generic form “Fluoxetine” which is cheap. I only pay around $1 copay. I have high enough bills for all the other meds I need. Cymbalta – probably lots more expensive – used by many here works the same as Prozac by increasing the available serotonin in the brain. It also does something more. It increases norepinephrine which helps against nerve pain. I have not pain (yet) so Prozac is just fine for me. And it doesn’t seem to make me tired. I quit taking it for a while some time ago and I don’t recall any difference as far as being less tired.