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

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.

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.

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.

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.

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.