Friday, 6 September 2013

Overcoming The Limitations Of Neuropathy

Today's post from (see link below) is the personal story of someone who was extremely fit, loved sports and was then confronted with strange and unpleasant, life-changing feelings that turned out to be neuropathy and in particular Charcot-Marie-Tooth disease which on further examination became chronic inflammatory demyelinating polyneuropathy.
She sought help at the Neuropathy Association and after a long struggle found her own ways of getting back to doing the things she loved. It highlights what's possible for some people with the necessary strength of mind and many people may be inspired by her efforts.

My Second Neuropathy Diagnosis Came With A Silver Lining
By Rosina Johnson

The onset of neuropathy was like someone had flipped a switch and all the electricity containing those very important messages flowing from my brain to the muscles in my arms and legs stopped. Just like that, the lights were dimming, the motor was shutting down…

2001: Getting a neuropathy diagnosis...

Rosina cross-country skiing in Bear
Brook State Park
Rosina (left, in picture) at the top
of Mount Liberty
Rosina participating in the Century
Ride Hanover

The neuropathy symptoms had been coming on for a few months and I had been doing my best to manage them, to hide them, and even to make excuses for them. I could no longer ride my bike, or stay upright on a pair of skis, or even walk up a small incline without assistance. I held on to the belief that the fault was with my bike (I took it into the shop to change out the cassettes after failing to complete a century ride) and my skis (I invested in a new pair of skis and some refresher lessons. I had convinced myself that I’d simply forgotten how to ski…very strange logic coming from a former cross-country ski instructor!). It never entered my mind that something was wrong with my nerves, my muscles, and my body.

Although I sensed something was wrong, I had never heard of neuropathy and I was not familiar with its symptoms. I thought the numbness and weakness I was experiencing was a result of poor circulation and aging. I was sure it was temporary and it would soon resolve itself on its own. But, it didn’t...

I soon found myself discussing these annoying symptoms with my primary care physician. He sent me for an x-ray to check the structure of my knee and referred me to a neurologist for a nerve conduction velocity (NCV) test to measure how fast electrical signals were moving through the peripheral nerves in my right leg. The neurologist conducted an NCV and an electromyogram (EMG), and asked me about the high arches of my feet … she was intrigued to hear that my feet were very much like my mother's. Then she shared her findings with me in a hurried conversation that took place while standing in the doorway of the examining room. “You have Charcot-Marie-Tooth disease – CMT,” she said. “A hereditary neuropathy that is progressive, degenerative, and for which there is no treatment or cure. Oh, there’s something else going on too, but I don't know what it is. We won’t be able to handle it here … you'll have to go to Boston,” she continued. I asked who in Boston I should see, expecting a recommendation but she didn't have one. She suggested I go back to my primary care physician, explaining she would send all the test results along.

What seems so outrageous to me now when I think about this experience is that I was given no written information, no fact-sheet about the disease, no brochure with the names of resources and support groups … not even a scrap of paper with the words “Charcot-Marie-Tooth disease” scratched across it. As I crossed the parking lot to my car, I was having a hard time remembering the long and unusual name of the neuropathy that I was diagnosed with. By the time I arrived home, I could not remember the name, let alone how to spell it. However, I did remember the acronym “CMT” -- which if you Google it, as I did, you will discover is also the acronym for “Country Music Television.”

In hindsight, why had no one suggested I reach out to the Neuropathy Association?

I made an appointment with my primary care doctor as I was anxious to get some answers and to begin to move the process of diagnosis and treatment along. It turned out that the neurologist had not yet sent the results of my tests to my primary care doctor. My doctor was a bit confused about why I had been sent back to him … he made a call to the neurologist’s office only to learn that she was on vacation and would not be available for another two weeks. He was very apologetic and suggested we wait for the test results. “The hell I will!” I thought. My neuropathy was progressing, my feet were beyond numb -- they had no sensation at all. I felt as if I was walking with two giant pillows strapped to my feet. My movements had become so wooden that I was beginning to resemble Pinocchio, especially when attempting to get up a flight of stairs. Simple things like buttoning a shirt or zipping a jacket were becoming more difficult with each passing day.

The time for action had come. I left my primary care doctor’s office with a clear understanding that I needed to take charge. After all, wasn't the responsibility of my health and well-being ultimately mine?

I went back to the Muscular Dystrophy Association (MDA) website that I had stumbled upon while doing my initial research a few weeks earlier. I reached out to them and for the first time since this ordeal began, and spoke with a knowledgeable person who shared resources I could tap into. I now had an appointment at a CMT Clinic at Dartmouth-Hitchcock Medical Center in Lebanon, NH. Even though the appointment was a month away, I was anxious about meeting with a neurologist who specializes in neuromuscular diseases and CMT, a social worker, a physical therapist, and a mental health counselor ... I was relieved and scared to death at the same time!

2002: Finding out I also had CIDP was a mixed blessing!

Rosina receives monthly IVIG

After my test reports from my first neurology consult were received by the Dartmouth-Hitchcock Medical Center, I received a call from Dr. Jeffrey Cohen who suggested waiting for the clinic day (which was almost a month away) wasn't wise and asked if I could come in sooner. I had an appointment with Dr. Cohen on my birthday, March 12th. Dr. Cohen asked many questions and paid close attention to my answers. It felt so good to finally have someone who listened…who understood what I was going through. Dr. Cohen ordered a battery of tests, including a lumbar puncture, and by the end of the week we knew “what else was going on.” I was diagnosed with chronic inflammatory demyelinating polyneuropathy (or CIDP, an autoimmune form of neuropathy). Dr. Cohen explained what this meant and what the treatment options were … and the more he talked the more hopeful and excited I became. He did not understand my excitement, until I explained it, “This may be my second neuropathy diagnosis, but you’re telling me there are treatment options for this -- several life-saving treatment options. How can I not be excited?”

Ten days later, I started my first five-day course of intravenous immunoglobulin (IVIG) treatment. I also joined a water aerobics class at a local college. I started noticing that my weakened muscles were slowly gaining strength. It wasn’t long before I was able to get back on my bicycle. Four months after my second five-day course of IVIG, I was back to hiking.

Rosina and Hannah at the top of
Mt. Washington

My daughter Hannah was graduating from High School in June. We had been planning for almost a year to celebrate this milestone by climbing in the White Mountains of New Hampshire (just before the neuropathy symptoms developed and had started progressing). I knew I wasn’t strong enough yet, but I had promised. So, I bought a pair of sturdy trekking poles and we set out. It was the toughest hike of my life. I fell repeatedly and Hannah spent a lot of time helping me. At the end of the hike, my trekking poles were bent and both my ankles were swollen … but we made it to the top of Mt. Washington, the highest mountain in the Northeast.

Life had dealt me a severe blow -- two blows, really; but it also opened my eyes to the importance of being fully engaged in the act of living and advocating for myself. Since my diagnosis in 2002, I have accomplished feats that I was told would be impossible for someone with CMT and/or CIDP: hiking, cycling, and rock and ice climbing all over the world.

The CIDP diagnosis and the IVIG treatments had given me my life back -- this was the silver lining I had been looking for. My passion for adventure had not changed with the devastating diagnoses and now 21st century medicine was giving me a second chance!

Fast forward to 2013: My most recent milestone – climbing Mount Kilimanjaro – and many more to come!

Rosina climbs Mt. Kilimanjaro

This past June, my adventurous spirit brought me to the foot of Mount Kilimanjaro, Africa’s highest peak, in the crazy hope of standing on the 19,341 foot summit. I wanted to show the world that people with neuropathy are up to the challenge of climbing both the metaphorical and physical mountains in our lives. I had been preparing for this climb for months. I worried about my strength, the altitude, my feet...everything that might impact my climb. I pushed forward, knowing I was as prepared as I could be, given the circumstances...

On June 29th 2013 at 8:10 am, after seven demanding days, I made it to the top of Mount Kilimanjaro -- my hope had become reality! I was humbled and overwhelmed to be in the presence of such majestic beauty and grateful to have the strength and courage to put one numb foot in front of the other…

Today, I am thankful I finally found the Neuropathy Association whose resources I wish I knew of when I was starting my neuropathy journey. My life with neuropathy is more stable and a little easier now. There were setbacks (after all, this is a chronic disease with relapses) and I’m sure there will be a few more. But through them all I will continue to fight, ask questions, seek out answers, and stay strong with the support of my family and friends and my team of health care professionals. I know I have a lot more people to thank, particularly all the plasma donors and people involved in making my IVIG treatments … I think of them during my infusions. I am not alone in this fight … none of us are! I hope my story will inspire others in our community to be brave, fight hard, and live boldly.

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