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Learning Past Cause vs. Quality of Present Life?
Neuropathy | Last Active: Aug 2, 2023 | Replies (52)Comment receiving replies
Good evening to some of our most appreciated Connect members. It is wonderful to experience how you all participate and take the time to develop discussions that reach into the future and design lifestyle changes that may be anticipated by all of you or none of you. I wish you had been around ten years or so ago when I was diagnosed with SFN. All I had was a bottle of Gabapentin and a referral to MFR therapy. Then along came the realization that this was a lifetime condition. Thanks to finding Connect to help my life partner with Prostate Cancer, I also received an invitation to be a Mentor for caregivers.
Then I began to spend more time in the Neuropathy group of Connect trying to learn as much as I could about my condition. A year ago......I began falling. My quads would just give way and I would go down. Through the effort of the Neurology team at Mayo I now have a name for my condition and a cause. I have SFN........and the culprit....radiculopathy. Some call it trauma related. That means I had so many falls, accidents, and surgical repairs to my bones that the nerve endings were pinched.
Knowing the cause has been very helpful. I am completing my first year of physical therapy designed for balance and stability......for radiculopathy. My Mayo PTt selects exercises from Medbridge and I do them consistently. I have learned how to fall and how to get up. I have learned that walking figure 8's in your living room helps keep you from falling when you go around a corner. I have learned to keep my balance while walking sideways, backward, and on my tiptoes.
Is this condition progressive? At this point, I am keeping up with it. However, I have no idea what the future holds as the aging issues just keep on coming.
I think my best bet is to tag on to your discussions. I will learn more. So, once again, thank you for sharing and keeping in touch with fellow members.
May you have freedom from pain and discomfort.
Chris
Replies to "Good evening to some of our most appreciated Connect members. It is wonderful to experience how..."
Chris, When I get frustrated with the so many unknowns of PN, I’m encouraged by this group who is trying to sort it out and make the best of it together, and I am in great admiration of the many folks like you who have been dealing with it much longer and had fewer resources and experiences from others to draw from, so you’ve helped paved the way for us newer members. Our mentors have shown a lot of patience with us going through what must be the normal stages of grieving, accepting, and living with Neuropathy.
Your posts specifically have guided me toward exercise, meditation, staying active, and helping the awful itch. I’ve read with interest your medical cannabis expertise and know you’re a wealth of information if I ever think I might need to try that therapy. It frustrates me though that I still have not been able to find MFR near me despite moving several times! I hope the training becomes more widespread as I can tell by reading your posts how valuable it must be.
In the meantime, I continue PT. Our 55+ community has a group balance class twice a week and we learn how to fall! It sounds insane doesn’t it! But we have enough challenges that we certainly want to minimize the injuries we could get from a fall. In private PT, I’m put on the floor so I can get myself up. We could easily fall when we’re alone or around people afraid to help us.
As a mentor and pioneer for many of us, thanks for all the sharing you’ve done and patience & understanding you’ve shown! You’re a good coach, cheerleader, and teammate.
Chris, thank you for your suggestions about walking figure eights… Now about how to do it with my walker!
Appreciate all of your input on connect and I’m so glad they invited you to be a mentor because you are so good at it. Stay upright! Bcool123
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I've been wheelchair bound for 33 years ( left side hemiplegia) I learned real fast on how to adapt without an electric wheelchair and tasks in general (I go backwards alot to avoid straining my right side, use the sides of streets for easier movement, multiple wheelchairs, accepting help... I developed esophagus cancer 2 yrs ago and now use a permanent feeding tube in my stomach. Blessed are those who can adapt. Blessings to you.