Non Standard Neuropathy: A Personal Story

Today's post from georgeschofield.com (see link below) is written by someone who receives a diagnosis to which he has to adapt. It's life-changing just like so many neuropathy diagnoses are but it's perhaps surprising for those who are only used to nerve damage being associated with pain, numbness, tingling and the rest. In this man's case, he frequently stumbles and falls but doesn't suffer much physical discomfort or pain at all - a non-standard neuropathy then! It just goes to show that there are many many different types and causes of neuropathy and it manifests itself in many different ways. That's what makes it such a difficult disease to deal with because the symptoms can be so interchangeable. That makes diagnosis so difficult and makes it difficult for family and friends to accept (never mind the patient him/herself!) because you can frankly, 'expect the unexpected' but it's still neuropathy. Worth a read because just when you thought you knew what neuropathy was...!

A TROUBLING DIAGNOSIS 
George Schofield Blog Feb 2

 I have to admit I took it badly. Not for long but badly nonetheless. You’d think I could simply test out of the emotional part of this. After all, I’m a professional counselor, a psychology PhD, an author and expert on human behavior and adaptability.

Wrong!

What set this in motion was the shocking number of times I tipped over. Once, after turning around quickly in a walk-in closet. (How is it that I can repeatedly ride my new bike for 30 miles without incident but just fall over in my closet?) Then, getting out of a car on my way to an important meeting. Then again in my closet. And again. My own diagnosis: doing too many things at once; distraction. My doctors’ diagnosis: peripheral neuropathy.

Peripheral what? I’d never heard of it.

That may be because it’s most commonly associated with diabetes, which I do not have, and as a side effect of chemotherapy, which thankfully I haven’t ever needed. Peripheral neuropathy (PN) is a condition that affects more than 20 million people in the US. It usually involves pain, numbness or tingling (or some combination thereof), but in my case I don’t have any discomfort whatsoever. It’s just that my brain doesn’t seem to know where my feet are when they are in close proximity to one another, especially when they’re turning.

There’s no cure for PN, but for some people—especially those with pain and tingling—a drug (sometimes Lyrica) is prescribed and may help with symptoms. For me, the treatment is physical therapy and better shoe support. That’s for my feet. For my head, I needed some other things, which I’m recommending to other PN sufferers:

Get Educated. A good source of information is the American Chronic Pain Association, ACPA.org. There also may be support groups in your area. There’s no PN support group where I live, but it is discussed at diabetes support groups, so I may try those. 

Inform and educate your family and friends. Let your loved ones know about your diagnosis. They already will know something has changed just by observing you, but may not know the cause. In the case of PN, stumbling can be mistaken for having a drinking problem. Help your loved ones worry about what’s really going on and let them know how they can help. 

Have a heart-to-heart talk with your life. I often say that there are a minimum of five of us living in my house at all times: my wife, me, our marriage, my life, and my wife’s life. Each of them needs nurturance. Each doesn’t always see eye to eye with the other. My wife and I were already in agreement. My life and I had some decisions to make. What do we want our quality of life to look like going forward? How dedicated to being active and vital are we? What kinds of limitations does this diagnosis place on us and what do we want to do about it?

Work seriously at whatever treatment process you choose. I’d never had physical therapy before, and was surprised at how much work it is. After the first few sessions, it’s easy to see progress and even easier to slack off. Kind of like dieting. Stick with your treatment for the long run, even for the rest of your life. You and your life (not to mention your family and friends) deserve it.

I also now know from experience that there is one thing NOT to do. With temporarily runaway emotions, I made the leap from a troubling diagnosis to OLD AND SLIDING DOWNHILL, which, of course, made it just that much more difficult for me to get centered again. So:
Do not succumb to the drama of the moment and translate your diagnosis into a confirmation that it’s the beginning of the end. It’s easy to do. This is where items 1-4 above come in. They are all essential.

It’s likely that this won’t be the only opportunity I will have to react to a medical/social/financial/professional announcement. I’m starting to think of it as practice for the ups and downs of life. I’ve found a lot of meaning in a song performed by the wonderful Christine Lavin, with apt rollercoaster metaphors. Be sure to watch Christine’s face as you are listening. Music and lyrics by Matt Alber. https://www.youtube.com/watch?v=Z8xgoa04SNY

http://www.georgeschofield.com/2016/02/02/a-troubling-diagnosis/