Connect
Learning Past Cause vs. Quality of Present Life?
Reading our posts, I see two populations or maybe three. There are those of us who, like Hercule Poirot, try to solve the mystery of what caused their PN. Then there are those of us who are more concerned with what might be done to lessen pain and slow––if not stop––the progression of their PN. There is a third group of us who try to do a little of both. Each pursuit can become a preoccupation, a preoccupation that can be really time-consuming. When I first got my diagnosis of idiopathic peripheral neuropathy, I thought only about How can be possible? What had I done wrong? Was it some long-ago injury? Poor diet? Could others in my family have had PN? Today I think less about those things and more about what I am doing in the here & now to manage my symptoms such as they are (chiefly terrible balance). I still think about what may have caused my PN (possibly my years of hard drinking when I was in my 20s and 30s?), but mostly I'm thinking about what I can do today to lessen PN's intrusion on my day. I was wondering how others divide their time in thinking about their PN. More about what may have caused it? More about what you can do to make your life more livable today? Or a little of both?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
@ray666 Ray, could not agree with you more! Yesterday, went for a walk...well it was hot for sure but did it anyway. Got back to house, felt good about the walk and it wasn't easy but as I'm learning with this PN, any accomplishment doesn't come easy from a physical point of view but the fact that I did the walk with a struggle made it even more worthwhile. I walked with the AFO's and a cane slow but determined to do it. Keep walking and might help with balance as well.
-
Like -
Helpful -
Hug
2 ReactionsHi, Ed (@njed)
"… slow but determined to do it."
That's the key. I used to be a great outdoor walker, for the most routine of reasons, like a mile walk to the market or a two-mile walk to my partner's house; that's in addition to weekend hikes in the hills. When my walking became wobbly, I gradually gave up walking outdoors. I hated to give it up, but it was no longer fun; it had become a slow, foot-shuffling effort. In time, I quit outdoor walking altogether (besides short shuffles from my car to my doctor's front door). Luckily, about four months ago, I got fed up and took myself to task: "Is this how you want to live out the rest of your life, Ray, as a short-distance shuffler?" I sat with my partner, and she and I devised a routine: an outdoor walk (of some modest distance) every Monday, Wednesday, and Saturday. We started that routine and––although it's been damn hot! LOL––we've not missed a day. That's because––while I may not be as fast a walker as I used to be––I'm determined to do it.
Ray (@ray666)
-
Like -
Helpful -
Hug
3 ReactionsHi, tprift (@tprift)
Thanks for your post. If you know from posts I've left recently, my No. 1 priority when I meet with my neurologist next month is to learn my B6 level. I've never known. Nor have I ever paid much attention to it, at least not until I was put on a hefty daily dose of B6 (two weeks ago). Fortunately, I've none of the symptoms (at least so far) the various articles I've read attribute to B6 toxicity. Naturally, I don't want to do anything that will bring those symptoms on.
Ray (@ray666)
-
Like -
Helpful -
Hug
1 ReactionHello, drs22 (@drs22)
I lean heavily toward a #2 myself. To some extent, that's because exercising packs a double whammy: it takes time to do, time away from other things I might prefer doing; and it's too easily put-off-until-tomorrow-able (that's my new word for today, LOL).
Where I'm still a bit of a #1––or maybe it makes me a #3 wannabe––is my love of reading the literature of PN, especially research reports, so that I'm able to answer my friend's questions about PN with at least a modicum of authority.
When time permits, I also send an occasional letter to my legislators encouraging funding of PN research. My letters may end up in dead-letter boxes, but even a half hour's letter writing gives me the feeling that I'm doing a little something for someone besides myself. That's not something everyone needs, but I know I do, and that's why for me, it's important I take that half hour.
Good luck to you! Keep up the exercise and eating healthy! They're the two best things you can do for yourself.
Cheers!
Ray (@ray666)
-
Like -
Helpful -
Hug
1 ReactionOf course. Glad you are catching this now. Once you start looking it is also amazing how many fortified food products and sports drinks have huge amounts of B6. And it doesn’t take that much extra to cause problems.
-
Like -
Helpful -
Hug
1 ReactionGood 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
-
Like -
Helpful -
Hug
10 ReactionsI'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.
-
Like -
Helpful -
Hug
6 ReactionsI knew a man in rehab with prostate cancer who could still walk but used a wheelchair mostly, he was lively 1 hour then dead on his back for several. He had constant urinary issues and would spend alot of time up in the bathroom or searching for adult diapers. I learned a lot about several cancers from my 3 weeks in rehab and though I hate the disease am grateful for the knowledge so I can understand more than my own problems. Blessings to all of you
-
Like -
Helpful -
Hug
2 Reactions@artscaping Chris.....I always look forward to your comments and appreciate the information you provide to those of us with PN. When I read your comment and you said "I have learned how to fall....I stopped reading and thought...hmmm. To have to learn how to fall is something. But then, I read the rest of your sentence .... "and how to get up". And, Chris, that is the key! You go down, get up again and that I find really encouraging. That is what we all need to. Many of us can learn from you how to deal with PN. I've had a few falls as well, fortunately no physical injuries but a fall sort of dents my level of confidence. I always get up and ask my wife is everything still connected, she always says yes with a smile. I take a deep breath and I'm on the go again. PN isn't easy to deal with, we see that every day in comments on Connect. So, keep commenting and know that many of appreciate your insight. Ed
-
Like -
Helpful -
Hug
3 ReactionsChris, 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.
-
Like -
Helpful -
Hug
6 Reactions