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Neuropathy after TKR: I'm 68 and fearful of future
Neuropathy | Last Active: Oct 22, 2023 | Replies (112)Comment receiving replies
You have already been so incredibly helpful and I so appreciate your encouragement. I am going to purchase the book and continue to learn more. I will most definitely continue to update on his progress. I am still naïve but continue to hope to find "something" that will provide true relief. He will be visiting in August for 3 weeks and I hope to be more educated by then on SFN. Are you involved in any new treatments at all? I read about VM202 - a gene therapy that is proving to be positive for regenerating nerves. Thank you again for your encouragement and being a volunteer. I feel very powerless as his advocate, but with all of this information, I hope to regain some sense of some control for us both. Sincerely thank you!
Replies to "You have already been so incredibly helpful and I so appreciate your encouragement. I am going..."
Hi there @lubelle. I see that Rachel @rwinney suggested that you visit with the SFN folks. So.....welcome, welcome, welcome. You know this forum is all about sharing. We believe that knowledge is power and when we can share our experiences with others, we learn. So, your son is a go-getter with developing SFN, (small fiber neuropathy). Along with the physical symptoms of pain and probably loss of strength, he has episodes of anxiety and depression. I can write this because I have been there, and except for the anxiety and depression, I still am "there," coping daily with sometimes quite progressive pain, tingling, numbness, and the forever-present fatigue. It takes a lot of energy to fight for reasonable control of your mind and body every day.
Although there is no cure for SFN, there are a number of helpful products, medications, and support programs that can improve your son's quality of life. I have a couple of preparatory notes for you. 1. Re: VM202 and other suspicious treatments, the reason I say suspicious is that as of this moment there is no known nerve regenerating process, treatment or medication. Please be careful. I will let John "@johnbishop. explain how shysters can appear very quickly in this world. 2. I read that your son will be visiting in August, at which time you plan to discuss SFN with him. John will help you find good resources by national organizations. And I have only one question......Is SFN a discussion that you have had previously with your son? I have a daughter older than your son and what I hear sometimes when I offer what I consider to be helpful information is, "Mom, You have it all wrong, etc., etc." I have to choose my words carefully.
Please know that you now have three Connect mentors and that we are here for you.....just as you are there for your son.
May you have contentment and peace.
Chris
Connect
@lubelle You're welcome! Thank you for your kind words. I'm happy to help as best I can.
No, I'm not involved in any new SFN treatments or aware of VM202. I would however like to introduce you to two of my friends, and fellow mentors, who oversee the Neuropathy group more-so than myself. Meet John @johnbishop and Chris @artscaping. Each are respectfully knowledgeable about SFN and may bring something to the table for you as you navigate SFN and being supportive to your son as he experiences this unknown territory.
It's awesome that he will come visit in August for 3 weeks! I can imagine that makes you very happy. Again, you're so welcome. Reach out anytime, I'm typically around. And remember, Mama's never lose their powers altogether, we rise to the occasion and be Mothers... loving, supportive, encouraging, motivating. You will not lose your Superpower for your son. Hang in there.