[lefthanded]

As my neuropathy gets worse, and my feet grow progressively more numb, what can I do to keep walking? I come home after a brief shopping trip and slip off my most supportive shoes and my feet can't feel the floor, and walking is difficult. Is it possbile to keep walking after the nerves have died? I can still wiggle my toes, as my PN is sensory only, so far.

[kreink]

Originally Posted by lefthanded

As my neuropathy gets worse, and my feet grow progressively more numb, what can I do to keep walking? I come home after a brief shopping trip and slip off my most supportive shoes and my feet can't feel the floor, and walking is difficult. Is it possbile to keep walking after the nerves have died? I can still wiggle my toes, as my PN is sensory only, so far.

Balance can become an issue, and if motor nerve damage is a problem as well you may experience some muscle atrophy or weakness when walking. I have sensory and motory neuropathy in my feet. I have one foot braced so that I dont have a drop foot and walk correctly, the other foot is getting braced this week. I began walking with a cane when balance started to become an issue, now I use forearm crutches. Your experience may differ though, these are the kinds of questions to talk to a neurologist about, or at least a physical therapist. People do walk on numb feet though, you may just have to make some changes to how you get around or to your environment. I have a rail in the tub and a bench to sit on when showering so I dont fall.

[Kitt]

Good post from kreink. And yes, people do walk around with numb feet. Just have to be aware of your surroundings, etc. Just do what you have to do.

[echoes long ago]

i have been walking on almost totally numb feet for 6 years now. They have become progressively number and now are totally numb above the ankles. I sometimes fall or lose my balance and have broken my ankles a few times, but all in all walking is doable. I use my eyes to balance and if the light isnt good i have to be careful. I also have what can only be described as a broken bones feeling in my feet when i stand or walk for any length of time and that has really limited me the last few months particularly but hopefully that part doesnt apply to you.

[Raglet]

My feet are numb, and I find it best if I just don't think about it. When I ignore it and just plain walk / drive/ whatever then I do much better. When I think 'wow, I can't feel the floor' then I get really wobbly really fast. It might sound weird, but I find ignoring it the best way to go.

hth

raglet

[lefthanded]

Thanks to everyone so far for your responses. I know I am not alone, and I don't want to become a whiner or to live in the past. But it is not so easy realizing I won't be the one to introduce my grandson to backpacking . . .

echoes . . . I already have the "broken bones" or sprained foot feeling, frequently after being on my feet even for an hour or less.

I guess what has me the most puzzled is how you get to see a physical therapist. I have asked my doctors and they say that Medicare won't cover one unless I am rehabbing after an injury. It sure seems to me that a little training might go a long way to keeping me mobile.


The hardest part for me right now is that I moved to Washington state in 1995 to hike and climb, and now I have great difficulty with a trip to the local shopping mall! I am dying inside to see some of my favorite places, like Snow Lake at the base of Unicorn Peak @ Mt. Rainier: http://farm4.static.flickr.com/3021/...g?v=1217304911
Natches Loop Trail/Dewey Lake: http://www.bbirmingham.com/images/blog/dewey_lake.jpg
Mt. Angeles - the hike: http://blog.seattlepi.com/myseattlep...015727_450.jpg
Mt. Angeles, the summit: (not me in the photo, but I have stood right there!) http://skisickness.com/Olympics/mapics/Sky1.jpg

Or the one I did 9 times in 1997 preparing to climb Mt. Adams:
The mountain:http://www.lysistrataproject.org/***...Washington.jpg
The trail:http://farm1.static.flickr.com/41/77...19219c.jpg?v=0

How do you learn to let go of your dreams? In 2001 I had dreams of climbing Mt. Rainier again . . . in 2002 I was diagnosed with ulcertaive colitis, and by 2003 I had undergone four surgeries and months on Flagyl, which is where most of my doctors believe my peripheral neuropathy initiated. My symptoms were supposed to be temporary . . . ha!

I would be happy to just be able to handle a 2 mile hike with a little elevation gain . . . That would get me to many places I would be happy to see again. Has anyone else with pn been able to overcome the pain and numbness to be able to do things like this?

[Kitt]

Flagyl is one that is not for CMTers. Apparently it certainly was not for you either.

I have had to give up lots of dreams and I just do what I can whether I'm likingi it or not. And I'm not liking it at all. But what do you do.

[antonina]

I am on Medicare and my neuro prescribed PT and it is covered.

The only requirement is that you have a doc's RX for it. In fact, I start PT on Aug 7 and was told to bring in the RX. Call the 800 medicare # and ask about it. I believe your docs are mistaken.

By the way. my dx is PN and FMS and I have had no injuries...so the requirement that there be an injury and rehab for it is nonsense. Please pursue this Medicare benefit...you're entitled to it.

[lefthanded]

Thank you, antonina. I will find a PT that understands what I am seeking and see my PCP. I am tired of being given Rx's for drugs, but nothing that teaches me how to survive this!

I can not give up. . . my grandson is too cute. And I really wanted to be the one to take him on his first hike. . . .

[nide44]

I find walking is good, even if it tires me out. I just have to rest frequently along the way. I recently did 8 days walking in Ennis, & Galway, Ireland during the Galway Arts Festival and had to rest quite often, but enjoyed what I could while I was there. My family was usually a block or 2 ahead of me, and just waited until I caught up with them. Sometimes I had to call it quits and go back to the rooms to rest & elevate my feet, leaving them to continue- and see me later in the day or evening. We'd make a time to rendezvous or call on the cell phone (we bought one in Ireland- It was free, with buying 60 euro worth of phone time, and turned on an existing one for international coverage, thru AT&T - highly recommended to have working cells in Europe).
I just did what I could.
Hiking may not be in your cards, lefthanded, we all have to make concessions because of this disease, but we can live as normal lives as possible, if we know our limitations.