Neuropathy stinks …

    • Anonymous
      January 14, 2011 at 5:30 pm

      [FONT=”Book Antiqua”][SIZE=”2″][COLOR=”Navy”]to all my GBS/CIDP friends … I have given up on the hope of doing the Churchill, Manitoba, Polar Bear Watch in October to celebrate another 5-year birthday.

      I can’t climb anywhere without hauling myself with my arms, so the tundra buggy would be very difficult, and the ice and snow to walk on would be dangerous, though I would do that if only I could get quads to work ( much to my neuro’s dismay — you should’ve seen the grimace! ).

      Daughter bought me a Golds Gym exerciser, which I use — it’s actually almost fun ๐Ÿ™‚ ) — so the muscles are still there. They just don’t hear the nerves telling ’em what to do.

      This is depressing and I can’t think of anything other than Churchill that I would desperately like to do.

      I hiked my way across the breadth of Norway to celebrate my 65th birthday.

      I rafted the Colorado in Grand Canyon to celebrate my 70th birthday.

      This turn of events is extraordinarily difficult to come to grips with.

      I know I should be grateful I am still walking around on my own, but I’m getting pretty old now and my Bucket List needs to get shortened. [/COLOR][/SIZE][/FONT]


    • Anonymous
      January 14, 2011 at 7:01 pm

      You’re right neuropathy stinks.

    • Anonymous
      January 14, 2011 at 10:46 pm

      Neuropathy does stink!

      But don’t let it win…don’t shorten your bucket list ADJUST it!

      You might not be able to do what you want now so change the order a bit.

      Try to find something else to do.

      We all have to have wishes and dreams!

      Keep at it and never give in! ๐Ÿ˜€


    • January 15, 2011 at 1:19 pm

      Go! Push the envelope! Neuropathy stinks but life is good.
      Those of us with CIDP and who have attained the status of “senior citizens” are never sure how much of our loss of activity is due to neuropathy or the aging process. I tell my neuro that I am not sure which is causing which as I have never had CIDP before and I have never grown old before.

      Hang tight!


    • Anonymous
      January 15, 2011 at 3:56 pm

      [QUOTE=Bill]… am not sure which is causing which as I have never had CIDP before and I have never grown old before.
      isn’t it great I can always blame CIDP for all the activities I can not do. I am only 77 and certainly I could button my shirts, drive a car, hold my hands steady, pick up a pin off the floor, maybe I could even ride my bike or run a marathon if i trained enough. ๐Ÿ˜€ Neuropathy stinks big time.

    • Anonymous
      January 16, 2011 at 7:15 pm

      Well I give you credit for even thinking about doing that Polar Bear swim.
      Who among us would do it even without GBS?
      You could build a miniature ice palace in your backyard though, and sit inside it surrounded by a pile of fluffy sleeping bags…while drinking a big mug of hot chocolate…just a suggestion. Bet your mind will come up with any number of good substitutes for your change of plans.

    • Anonymous
      January 19, 2011 at 12:47 pm

      Rocky, you should commend yourself for what you have accomplished with this disease. That is admirable. In a year, I have not even attempted exercise due to my condition, so that is remarkable to me what you have done. More power to you! I dream about being able to do yoga again or jog again, but I have lowered my expectations to fit with my capabilities at this time…..

    • Anonymous
      January 20, 2011 at 2:21 am

      You have every right to vent a little !! Go take a hammer and smash up a 2 x 4 somewhere !!

      Well, maybe that one is not on your bucket list yet. I am glad you are fiesty enough to HAVE a bucket list. I just thought we would bake some bread together and wallow in our own sorrows as we ate loaf after loaf of sourdough bread

      I still think of you, I hope things are well.

      Dick S

    • January 21, 2011 at 5:14 pm


      I’m only 40. Used to climb as well; mountaineering was my number one hobby. Today I can hardly climb the stairs in my house.
      I know how you feel. I feel the same. I know…more than that, I fell what CIDP has done to me. I had plans to take my 10-year-old and my 6-year-old on climbing adventures, teach them rock climbing. I don’t know how I’m going to do that. Need to find a way. I wish I could stand on a skate board like I use to, but I know I must not even try…the floor would be the only direction it would take me.
      I know I should be grateful I can still walk, it could be much worse. But I agree, neuropathy does stink! Specially if you have tasted so many wonderful things in your life before it struck you. Like the mountains.
      What are we going to do now? I know I will never climb like I used to. God may grant me the blessing of walking the hills once more, if He wishes to.
      We could look at the positive or negative way, but the “way” is the same no matter how we choose to look at it. And the only way is for us to adapt. Everybody says “don’t let this thing beat you!”. What is the reality? Can we, CIDP people, do things like we used to do? No! Will we ever be able to do it the same way again? Probably not! Has this inability arrived at the expected time in our lives? No. What is the meaning of defeat then?
      …you will choose the meaning.
      We need to find I way not to let this thing destroy us…destroy our capacity to adapt. As long as we can adapt it will never destroy us.
      I hate this disease so much, in a way you can’t probably imagine. But I love my kids so much in a way that you can imagine, I’m sure.
      Once we get too old to do it ourselves we become teachers. That’s our way of staying involved, that’s how we adapt and face the inevitable.



    • Anonymous
      February 3, 2011 at 2:28 am

      Rocky ~ No argument from me on your opinion of neuropathy. Your story was very inspiring to me – that you did all those amazing things.
      Years ago when I realized it was my life, I fled and went in search of my dreams and they found me! I’m so glad I did. At the top of my game 19 years ago, suddenly it was CIDP, and not my idea of adventure. My Plan B bucket list sure doesn’t look like I though it would; but its a list nonetheless.
      I still find life fascinating and can’t wait until my next adventure. The last trip was to the Getty Museum in LA and my next will be Pennsylvania for my son’s wedding. It’s 2600 miles one-way and I have no idea how that’s going to work – yet. But it will and I’m sure it will exceed my expectations. My love has always been the mountains and rivers and forests and that sense of what’s over the net hill. I truly love it but understand my limits.
      Like Yogi Berra said ‘when you come to a fork in the road take it.’ I’m sure you’ll find that fork and know the right way to go. Best to you.

    • Anonymous
      February 6, 2011 at 10:47 pm

      Inch by inch, life’s a cinch.
      Yard by yard, life is hard.

      So I break it down to little bits, and that works for me.
      For example: In the summertime, I wanted to go out hiking to the hills as usual, and pick a few pails of berries on a hot summer day. The way I used to do with my bike, and I’d bike 2 miles there, and pick 4 pails of berries all day long, and bike & walk the 2 miles back, have a quick shower, and spend the rest of the evening picking over the berries.

      But nowadays, just thinking about that defeats me. I can’t do that now.

      But I can get dressed, and have breakfast, and find my gear, and have coffee, and pack up my walker with my stuff and go a few blocks to the nearest park-bench and rest for awhile. And then I can get up and go a few more blocks, and find another spot to rest a bit and look at the flowers and the campers and kids biking, and when I feel like I can move again, I get up and go up the road to the hills. And then I stop at the washroom, and then meander along the road some more, and find the path to the berry bushes. And then I stand there a while and rest and look at the trees, and put on my mosquito repellant, and then start pushing my walker up the first hill. And after 20 feet, I stop and breathe for awhile. And then I push my walker another 10 feet, and stop again. And then I force myself to make the top of the hill. And then, I stop to unload my walker, so I can sit on it and rest.

      And then, I reload and wander along the path, looking at everything till I get to the berries…the flowers, the plants, the wind in the grasses, the birds flitting in the trees and bushes. And then I stop and snack and drink some water, then sit on the edge of the path in my walker and pick some berries. Hikers come along, and we say hi and chat a while. The day goes on this way, and I think it’s only a couple of hours, but when I look at my watch it’s 6 hours gone. So I take my half-pail of berries and make my way home again, just a bit at a time. And as I go, I’m storing up experiences and memories and loving every minute of it. And it’s still life…a good life…and I’m happy.