[Julie K]

I have been loosing my balance more and more. Somedays I cannot feel the pressure of my feet to walk, instead I feel it from the top of my ankles which is very painful. Anyone know what I am talking about? I lost my footing and fell tonight. Still trying to figure out if I am really hurt or just a few bruises and scrapes. I have been thinking about asking the doctor if it is time for a wheel chair but I feel like I would be giving up if I do. Lots of things go through my mind like my safty is more important than my pride, but then I also feel like the doctor will think I am being silly. Lots of mixed emotions. I already use arm crutches to get around and wear braces on my feet and legs to keep from turning them.

In November I came down with a really bad staff infection on the bottom of my foot. It is still healing. What a slow process that is! After all this time there is still a small open portion of the wound. Don't even know how all this got started except that I had a blister from who knows what on my foot.

Thanks for letting me just air my thoughts and frustrations a little.

[shiney sue]

First of all I want you to know i'm very sorry you fell again..It's both scary and no fun,it;s also hard to get up...Yes I get up and there's no feeling,
in my feet and down i go far to many times. I also know the ankle feeling.
I have used a space walker,you put your hands through them because of pain in hands and arms. They are very heavy and if that fall you you woudl
know it..I am getting my second wheechair being make Dr's order's,
more than one..Do I feel like a failure no,and for those who don't that's
wonderful..If your worried you might of hurt yourself call the Dr. I have
broken bones and have done more damage..I am at the point I don't care about what anyone thinks,it's my life..I love being outside and what others care would keep me inside..Yes i've had people come right up without,caring or asking what I have,and say oh my Dr. wanted me to have one of those
I said noway..My children tell them they are blessrd they don't need one..
Your the one in the long run who has to make the decision..All I wish is
for you to feel better.. Hugs Sue

[cyclelops]

Sorry to hear you fell.

Do you have the option of one of those power chair things? I imagine you have explored different walker options.

I do not feel my feet at times....when I step on them...reading this is scary for me...and loss of the ability to use hands and feet is indeed a frightening prospect.

My sensation always comes back in a few minutes, but I can see changes in my foot and ankle structure and my hands as well. I can still walk quite well, but I imagine things can go in a heartbeat.

Only you can make that ultimate choice, but it is probably better to get around and out socially and safely.

Do you have one of those 'life pendant' things? That might be a good idea too.

[Yorkiemom]

I was wondering if you are able to use one of those (whatever you call them) wheeled carts that you can push in front of you, but they have a seat where you can sit down if you get tired, or if your feet and legs need a rest. I don't know if this is appropriate for your situation or not, but I have one that is really nice, though just about shot.

The handles are height adjustable and there is a nice seat to sit on, which has a storage area beneath it for shopping. I got mine from someone whose mom didn't need it any more, and it is a little heavier than the ones I have seen at Sam's in the pharmacy for around $100 or so. You may have seen them; they are different colors.

Don't let what you think your doctor will feel get in your way of thinking what is best for you. You sure don't want to get out somewhere, or even at home, and fall and break something...

Hope you are OK.
Cathie

[cyclelops]

Julie,

It sounds like you have significant problems with neuropathic hands. My hands have really gone bad in the last year....it is amazing how fast they are going down the tubes...I can not take pressure on them at all. I could not possibly use crutches and put my full weight on my hands.

PN can be so darn disabling, yet people do not seem to understand...it is a tough disease. It sounds like you had crutches that shifted the weight to your fore arms? Am I correct? I am wondering about this, in case this happens to me, which I assume it will at some point.

Have you ever had a muscle biopsy? Mine showed myopathy now, on top of the neuropathy...

I wish we had an organization like the MDA or other sites for folks that have significant disability issues with PN....PN is about pain but it is also about loss of function for a lot of folks.

If you don't have one of those life alerts I would get one of those, and look into the seated walker...like Cathie said...it could perhaps be modified to take pressure off the hands.

[hoibie@comcast.net]

I recommend taking a class in Tai Chi for those who are relatively mobile. It helped me to improve my balance. Thwere is literature that claims Tai Chi and Yoga can relieve some pain and discomfort.

[Ides]

I fell in the middle of December. I went to stand up from my desk chair and felt incredible pain in my right ankle followed by a loud snap sound. I fell forward and landed on my left knee and shoulder.

At first they said my ankle was merely severely swollen. Then Friday, 3 full weeks after the fall, my PCP called and said that a fracture was spotted. A portion of the fibula broke off.

My neurologist told me that almost all of his patients with small fiber neuropathy of the lower extremeties has fallen in virtually the same manner that I did. He said my brain probably has no idea where my feet are spacially. He said in my type of fall usually the foot is turned slightly when the person thinks it is flat on the floor. Then the ankle "rolls" when one stands up. I was told to look at my feet and see where they are in relation to the floor prior to standing up.

Wearing a cast is not fun when one has neuropathy. No clue how much longer I will have to wear it.

I hope you have no serious injury from your fall, Julie.

[antonina]

Ever since my left leg collapsed without warning and I broke my ankle, I have been terrified of another such event. My answer is to use a four wheeled walker thingy (at home & outdoors) I got @ Costco which folds easily and does the job. I've been considering a scooter and may well do it since walking, even w/ a walker, tires me out.

I'm not worried about the opinion of non disabled "civilians." I'm much more concerned about a fracture recurrence and all the disability that goes with it. My advice is to do whatever it takes to protect your limbs from harm. You don't want to risk compromising your independence even more by injuries/falls.

[cyclelops]

Thank you sooo much for this post.

I had a tibial plateau fracture just before my diagnosis of PN, and they casted me from toe all the way up to my hip...three days and two trips to the ER, later they had to cut the cast off I was in such incredible pain...they thought I was nuts.

It was a stress fracture and they told me that I should not be in that severe of pain. They did cut off the cast and that helped a lot....they just gave me a huge boot then and said stay off. It never dawned on that orthopedist, that I had a neuro problem and I told him my legs were tingling and going numb prior to the fracture being discovered. It also took one year and a 'coil' to heal it. It still hurts....and that is because the knee is unstable. And--I was in super good shape when this happened, so it isn't the fracturee's fault... about 2 years later I found out I had profound nerve fiber loss below the knee.

Well, it was the neuropathy, not the break that hurt so bad....I didn't think about that until now, and of course I did not have neuropathy.

This also validates for me how PN can cause all these bone and joint problems I have been struggling with for many years now.

Julie, I think it is best to err on the side of caution, and use whatever one needs to prevent falls. Ides is correct....a broken bone with a cast is agony when you have PN....and Ides, I will be a whole lot more careful now....BTW, I have herniated discs in my T spine and feel my spine is unstable, and I recently found out this can affect the spinal alignment as the paravertebral and intravertebral muscles can lose innervation.

This condition is hugely complex....one reason I put the scope of PN posting up.