Learning Past Cause vs. Quality of Present Life?

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

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

Well just leave it to you my dear to bring me to a sudden "Halt". I haven't tried Figure 8's with my Rollator. I think it can be done but the design of your Figure 8 will have a be larger and then I wonder if it still works to teach your body to lean the correct way without falling. If you do use a Rollator, wouldn't that keep you from falling in and of itself? Hmmmm? I will try it tomorrow.

Thanks for your kind words. Connect is so important to me. I learn so much from all of you. It is the perfect volunteer effort. Keeps my mind working and my mouth in check.

May you have happiness and the causes of happiness.
Chris

Love that Ed, sums it up very well. I think I’ve accepted whatever it is and I focus on what I CAN do, but sure wish there was enough to know more about the “normal” road ahead for me so I can make more informed major life decisions for my spouse &I (like the major household move and purchase to new state we just did). I worry about ending up on the floor at any moment with permanent incapacity and needing to shift to nursing home for rest of life. (I don’t worry as much about God taking me permanently). I’ve asked the direct questions to doctors but for the few doctors I’ve asked, it’s been a quick and simple “I don’t know”, not even a wide range of possibilities, no elaboration at all. Ive never been able to even get what my “average” expectations should be regarding disability prognosis. They say so many of us have idiopathic PN, yet I guess they haven’t studied & analyzed how people have fared with it. I’d hope it would be like medicines or vaccines or other treatment expectations or disease post-mortems given like “30% got sore arms within 24 hrs, 10% ended up in wheelchair after X yrs, 60% lost ability to type or flip pages after Y yrs” etc, or even something as vague as “50% reported diarrhea and the other 50% reported Constipation”. That’s why I get stuck in the rut sometimes in wanting to know more about the likely cause - then maybe the group I best fit in is narrowed more so maybe my focus on best therapies to use can be narrowed, and I can be better informed for making big life decisions.
Oh well, absent that we move on, not fear the unknown and just keep doing what we think is best, and trying to find and learn from who we think are most affected similarly. And you’re right, moving is the solution! Sitting, getting weaker, and feeling sorry for ourselves will not help any outcome. One thing I am certain about is getting in the pool again today and doing my PT exercises because it’s a win-win in this awful heat!

My Rollator still gets kind of hung up on cracks in the sidewalk. So I have to be careful…. oh, and don’t you remember skipping down the street…! 😄😄bcool123

Thank you Debbie. Reading what you had to say was very helpful. I just found this site today and have learned much and found a sense of peace knowing there are others walking this neuropathy path. Thank you again for sharing your experience.

Hello @kath737, I would like to add my welcome to Connect along with Debbie @dbeshears1 and others. I was also happy when I first found Connect and learning I wasn't alone. It is really helpful to read the experiences of other members. The Neuropathy Support Group has many discussions you might find helpful. You can see the list of discussions here - https://connect.mayoclinic.org/group/neuropathy/.

Do you mind sharing a little more about your diagnosis and symptoms that bother you the most?

Thank you John for welcoming me! My journey with neuropathy has been going on for about a year now. I have some other things going on like type two diabetes, but my numbers are low - A1 is 6 so we know that is not causing the neuropathy. I have had an MRI done of my brain and that my brain is fine and I had the awful muscle test done and my muscles are fine. I see the neurologist in August and I’m sure there will be more testing. The left side of my body is more affected and has more numbness. The numbness starts under my arm and then goes down through the entire left side. My feet and left hand are the worst. I have constant pins and needles there. My right foot is also affected but not as much as the left side. My ankles at times feel like there is a metal vice squeezing on them. I also have a weakness in both legs, especially the left one. Some days are better than others as far as walking and on the worst days I need to use my cane because my balance is not great. I find it frustrating, and would really like to know what I’m dealing with. I’m not as concerned about the why of it because it is what it is. I am concerned about where I go from here. Thank you again, John and everyone’s posts that I read. I no longer feel like I’m alone on an island.