JOHN: What brought you to Mayo Clinic Connect?
@dbeshears1: I was struck suddenly by a disabling condition a few years ago. In my large network, I did not know of a single person with idiopathic peripheral neuropathy (PN). My local neurologist referred me to a couple of medical universities that I made long trips to visit. My doctors directed me to extensive and very helpful physical therapy, but they were unable to find a cause or cure, nor did they have support groups or lists of resources to help guide me through this major lifetime event. I was left to simply check in with them every 6 months to see if anything changed.
My life as I knew it was turned upside down. I had the financial setback of no longer being able to work and the physical setback of no longer being able to fully care for myself and to participate in the sports and activities that my husband and I were accustomed to doing together. I wanted my health restored and my life back.
I felt alone in my search to understand PN and how to live well with it. After two years, a Google search on a particular symptom linked to a discussion on Mayo Clinic Connect. I signed up immediately and was just floored to learn that there were indeed many people like me struggling to learn about and live with this condition.
Physical therapy helped get me out of a wheelchair and to walk with the help of a cane. I’m thankful to be able to drive again.
JOHN: What motivates you to take part in the community?
@dbeshears1: I was motivated and helped by people on Mayo Clinic Connect who have been dealing with PN for a long time and were willing to share their learnings from real experience. The volunteer mentors guided me to educational resources, research, and prior discussions on topics relevant to me. Members and mentors helped me realize that I needed to prioritize living with my PN as successfully as possible and try not to let negative emotions take away from the positive energy I needed to be able to do the activities I still can and like to do. Now that I’ve been dealing with PN for seven years, I like helping other people with the shortcuts shared with me that helped me get to this stage.
JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?
@dbeshears1: Very few of us with idiopathic PN have identical symptoms or challenges.Members in the support group span a wide age range and have a variety of other preexisting conditions. I find I need to be open if I’m seeking to get specific help from people with similar issues. In return, members are very open because we all have the same end goal.
JOHN: What support groups do you participate in?
@dbeshears1: I only participate in the Neuropathy support group because it’s the most unique thing in my life that I’m struggling with and impacted by every day. I don’t hesitate to browse through other discussions or support groups when something comes up that I’d like to learn more about.
JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.
@dbeshears1: I wouldn’t say it was a single moment, but there was a turning point where I realized a frequent presence in the neuropathy support group was helping guide me through my neuropathy journey. At times I was spinning my wheels and not forging ahead with more acceptance. I might never know the cause of my PN and there just isn’t a cure for me (yet). I needed to focus more on what I can control to make living with PN easier.
Ed developed PN before me and was ahead of me in the acceptance process. But he seemed to know I had to exhaust myself and get some things out of my system in order to, as Ed would say, start focusing on what you CAN do. I give Ed much credit for helping me to stop feeling sorry for myself about what I can no longer do and to find new things that I can do with my current condition. I’ve learned to appreciate what others take for granted.
JOHN: What surprised you the most about Mayo Clinic Connect?
@dbeshears1: What surprised me the most about Mayo Clinic Connect was having to stumble onto the website myself. Over the course of seven years with PN, I have moved to three different states with three different medical networks that didn’t have their own support group offerings to help people like me with certain chronic illnesses. I’ve learned from many others on Connect that they stumbled upon Connect similarly. Connect has been a game changer for me in dealing with my illness. Without a doubt, it is Best in Class. I would love to see other medical organizations help their patients by recommending Mayo Clinic Connect if they don’t have a similar network of their own. I try not to look back, but after two years of wandering around lost, I am so grateful to Google for getting me here!
JOHN: What energizes you, or how do you find balance in your life?
@dbeshears1: My husband is my biggest source of energy. He is a little older and in great physical shape and it’s important for both of us to stay active within our abilities. A recent solution was to move to a 55+ active community. He can play pickleball, run, bike, and play with others who can continue a very active lifestyle with him. I have tone and balance classes. There are also pool exercises we do together. When I have to sit, which is most of the time, I read or cheer for him from the sidelines. He loves yard work and I can do housework. It seems balanced to us!
JOHN: Tell us about your favorite pastime or activity
@dbeshears1: We recently moved back to South Carolina and our backyard is a lake with trees. It seems like a bird sanctuary, mixed with the occasional alligator and loud cicadas. Every nice evening we spend sitting outside appreciating nature. We have always loved baseball and football and like traveling to see our favorite teams play. Our seats have to be carefully arranged, but we still go to several professional baseball games a year.
JOHN: Do you have a favorite quote, life motto or personal mantra?
@dbeshears1: “Don’t judge a book by its cover.” I have learned that with PN, we often look normal. People can’t see our pain or understand our limitations. While I usually have a cane or walker with me, people’s handicaps or illnesses aren’t always that obvious.
JOHN: What food can you simply not resist?
@dbeshears1: Anything shellfish. I grew up on Chesapeake Bay in Maryland so it’s in my blood. I don’t fry anything, it must be steamed, broiled, grilled, baked or sometimes raw. Crabs, clams, shrimp, oysters, scallops… and Old Bay seasoning. I often travel with my own Old Bay seasoning!
JOHN: What do you love about where you live or vacation?
@dbeshears1: I have always loved water, just looking at it or being on it. At home we have a backyard with a lake and wildlife, and a community pool we take frequent advantage of. Our vacations are almost always somewhere on the water with an ocean view and a pool since I can’t walk steadily on a beach. But we’re thankful we have relatives who live near mountains so we have an excuse to visit when the East Coast heat gets unbearable!
Member Spotlights feature interviews with fellow Mayo Clinic Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
I enjoyed the chance to get to know you and my favorite part was about shellfish! I grew up on the Atlantic but now I'm in the desert. Green chile is great, but it will never compete with steamed mussels (and please don't put chile peppers IN my mussels!). Thanks for being here.
@dbeshears1 Thank you for letting us get to know you a little better. Love your favorite quote! Being an old worn book myself it’s sometimes pretty interesting learning how others perceive you. Hoping your day is pain free and enjoyable!
Thanks Miriam! No diet is complete without a moderate amount of green chiles, but I agree, probably would take over the taste of fresh seafood. I never met a mussel I didn't like!
Thanks for working with me John - and you're a "young" book; you have definitely been an encyclopedia of knowledge and resources, and I appreciate all of the guidance you have given me.
Such a wonderful write-up! I have to say the I agree with you when you mention that you have to bow out of certain activities due to your current health situation. I find it very difficult to not participate in activities because it wasn’t until I had two sons, that I became “athletic”. But now I’m not very athletic but I try with my ‘grands!’
@dbeshears1 Debbie, it's so nice to see the Spotlight shine on you! Watching your evolution of growth and acceptance on Connect has been wonderful to follow. I know you've put a lot of work into it and it hasn't come easy. You remind me a lot of myself in many ways. We share similar journeys right down to the 7 years, job loss, and still having active husband's leaving us in the dust. Haha! My hubby bikes, kayaks and coaches HS basketball. I cheer him on, like you cheer on your husband, while having my own physical therapy exercises, daily stretches and cardio to stay physically active. He mows and weed whacks, I take care of the flowers....it seems balanced to us, too!
Please be very proud of how far you've come, and for continuing to problem solve and strategize your way through a reimagined life of focusing on what you can do and not looking back. I was once told by a wise doctor that if you want a new kitchen you have to demo the old. Rebuilding mindset takes perseverance and bravery. Keep up the good work and thank you for helping many others on Connect with your experience, support and optimism.
Thanks for sharing!
Hope you are well on your way to achieving your goals.
Finding a community to connect with is one of the most powerful ways to find answers and build a community of sharing and mutual support.
Best,
Ann Marie
Mrs. & Mr. @dbeshears1
Thx for your answers, Debbie & thx questions John @johnbishop
Having no feeling or little inside the body (diopathic)? Nerves & illness, also?
And having a better physical energy having good therapy are great!
Like you, I used Google-search that sound MAJO Clinic Connect website. I’m a little different usage of places like MAJO. I became a TBI person for my bicycle accident 12 years ago, but I added of my deep pain from my rear-ends to the bottom of my feet two years ago. That part of my rear-ends started when I feel down in my garage on the wood parts.
I still have a TBI, but how did my Dr. A. - he helped part of my body from my TBI accident - helped me 2 years ago? He cut part of my back (rear-end to my back) and moved from that nerve to the bone. After this, there is ZERO pain! But the rest of falling down, my strength is sorta gone on my right-side from my knee down. It’s kills my balance 2 years ago. So know, thankfully, I exercise by lifting, holding, walking part, stretching, 3 times a week.
There’s NO pain but working the other 50% by unbalance isn’t easy, but exercise, oh, exercise.
Greg D
PS: After my TBI accident would not swim again. Pert of the control of my brain is broken. It’s doesn’t allow my brain to control it, but after my back-surgery, I hope it’s there from my back surgery 🙂
Hi, Debbie ~
I was tickled to open Connect a little while ago and find that the Spotlight was featuring your journey. Thank you for allowing those of us who are traveling with you to get to know you better. I always find myself feeling comforted after having heard from others on Connect who are seeking ways to adjust, discovering new ways of thinking about and acting on symptom relief, and sharing their visions of moving into their futures.
You're a great travel companion ~ thank you for sharing not only in the Spotlight but often by contributing to ongoing discussions. You are appreciated!
Barb
Greetings, Debbie. First of all, I am always so happy that you have made a kind and meaningful comment on so many posts. I find myself reading your response right away, making sure it sounds like our Debbie and that means the content will have value and be based on your research and life experience. Today, I came across your Spotlight. I should have known that something was ready to make my day. Could it possibly be about shellfish and Chesapeake Bay? Oh my goodness..... you are my East Coast twin. I lived in Bethel, Delaware, right on the river. As soon as the weather warmed up a bit, we took the boat over to the Chesapeake to settle in for the summer. In addition to my daughter and family, we always had a German shepherd or two. I also lived in Dover, Milford, and a few other places I have forgotten. I was with Del Tech for quite a while before returning to Califonia, Where did you find your best crabs?
My best......Chris