Patient Stories

Mike’s Story: Spreading Positivity, Despite it All!

It was 2014 and I was getting married for the FIRST time, a little late in life. I was determined to lose those extra 40 pounds and I was on the treadmill running eight or ten miles every day. I was determined and was not holding back. Well, I won the battle, but lost the war! The wedding was phenomenal, on a mesa in Santa Fe, with about 35 of our best friends from all over the country. It was just a few months later that I began feeling different. My legs muscles were twitching. My feet were hurting like crazy and I didn’t know what was happening to my body. Could it have been all of that running and trauma to my body? I am still not sure to this very day. My primary care doctor assured me that it was nothing to worry about. When I asked to see a neurologist, he told me that I didn’t need a neurologist. Months later, I became my own advocate and found a new primary care physician who referred me to a neurologist. After an MRI of my spine and an EMG and nerve conduction study, I was told I had idiopathic peripheral polyneuropathy. Gosh, finally a diagnosis and one that seemed daunting. Nothing was holding me back from getting the best possible treatment. After all, I had had a wonderful career and saved for a big retirement. ( I retired in October, 2016). If I had to spend my savings on feeling better, I would do it. Actually, I had thought I would be in Bali and Fiji and Patagonia and Australia at this point in my life. But, alas, I needed to put all of my efforts into getting answers on how to feel better. So, I went to the Mayo Clinic. My diagnosis was confirmed and I was told that I should take Gabapentin. Nothing more, nothing less. But, my local neurologist suggested weekly acupuncture, physical therapy, and massage. She also recommended hypnosis and swimming. Of everything that I have tried, swimming has helped me the most. My legs and feet just feel better after I swim. Nothing else really seems to help much, but I wake up hopeful every single day.

This disease changed me, but was NOT stopping me. What could I do still? One of my friends with multiple sclerosis told me to focus on what I COULD DO, not what I couldn’t do. Good advice. I cultivated two hobbies. One was meeting different friends at least three days a week at different restaurants. I became one of the most prolific YELPERS in Charlotte. I even won an YELPIE award! For me, getting together with different friends each week kept me plugged in and affiliated. Experiencing different restaurants became a mission and I have now completed about 400 Yelp reviews. My second hobby was going to thrift stores to find items that I could FLIP on the on-line marketplace sites. Amazingly, I have brought in $15,000 in just over a year. This has also kept me active in that I have to shop, market my items, and coordinate with interested buyers. My FLIPPING hobby has paid off!

Perhaps what I am most proud of is my Facebook support group for people with PN. I had tried several Facebook support groups and found that I was depressed when I read what people were saying. Surely, people with PN were still able to experience some positive things in their lives. I decided to call my group PERIPHERAL NEUROPATHY SUCCESS STORIES. I had no idea if it would gain traction, but after three months, there were 755 members from 43 different countries. The feedback that I have gotten from members has been phenomenal. Our group has offered inspiration, education, and humor. I often hear how people are glad to finally find an on-line support group that is positive and makes them feel better. Perhaps this will be one of the endeavors and legacies that I am most proud of in this lifetime.

I have just gotten a spinal cord stimulator implanted and am not giving up on finding ways to feel better. I have also just gotten a foldable scooter because I want to have the ability to go to outdoor festivals and parades and maybe even travel the world again. My goal for the coming year is to find ways to help the Foundation for Peripheral Neuropathy raise awareness and massive funds for more research. Already we have some good ideas that we will develop and execute in the coming year. We will roll out something that will be fun and engaging for all. Stay tuned! Peripheral Neuropathy may have changed a lot of things, but it’s not stopping me from living a purposeful life. It will NOT define me. I will continue to put one foot in front of the other and live one day at a time. Along the way, I will stay affiliated to a lot of people and will continue building the PERIPHERAL NEUROPATHY SUCCESS STORIES group. I am not throwing in a towel and nor should anyone with PN. There is just too much to do, to see, and to experience. We need to live one day at a time and focus on all the things we CAN DO!

Submitted by Michael, North Carolina

 

 

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