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Patient Stories

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What Nerve!

At 98, Gloria Potter shares her peripheral neuropathy journey.

“What nerve!” We have heard that exclaimed over the years, but the meaning was only one of outrage and the actual nerve cells were not considered. Those of us with peripheral neuropathy may well have the outrage because we are experiencing a thoroughly outrageous condition. As our nerve cells are dying, we suffer pains of increasing scope and intensity. My introduction started when I began falling down and blaming that on the San Rafael sidewalks. Or the clumsiness of my aging feet. I was in my late 70s or early 80s when this began. Ultimately, I went to a neurologist and found the diagnosis; never realizing where it was going to take me.

Falling Down…

As this disease (if disease it is or just a crumbling of an aging human body!) progresses, I am amazed at the disablement of first my feet, and then increasingly over the years pain moving through my legs, then hands, arms and back, as if it were on a journey to invade me totally. That is the nature of the beast. And it is a slow but relentless progression.

For several years I could do what I always did: walk a lot, drive my old car, do my artwork… it was harder, but I could maintain my lifestyle. Gradually, function has lessened, and I have the message… without pain relief medication (which I have eschewed so far), this is going to be a hard go… losing the abilities to care for ourselves, ultimately.

As of this writing, I type more easily than trying to hold a pen and put it neatly to paper. (I thank the gods for the internet and my keyboard!). And at 98, there is almost bound to be some breaking down of other body functions. There are! So, upsetting as this “contribution” of peripheral neuropathy is, I can still operate in life, but am relying much on my loving and caring family and friends. Thankfully, I have doctors to back me up with knowledge and guidance… sometimes medications… insurance… those things that in the past I have tended to take for granted. It is not something to take for granted, but I had come from a family of medicos and help was always right there. Time changes things.

Getting Back Up…

I have found that very few people, younger people especially, have any cognizance of peripheral neuropathy, and I have always lauded the Foundation for Peripheral Neuropathy for trying to promote that missing knowledge and understanding. Indeed, as our population’s age extends, I expect there to be more people stricken, and that the medical profession will also have to become more knowledgeable, and in some distant time prevention may be discovered. That is our wish always, isn’t it, for debilitating diseases and malfunctions? Staying balanced and hopeful is my preferred attitude… it is not always there. Then I go to my loved ones and/or write poetry about other aspects of living. I go into a little garden plot to admire it and be glad I could once work in it. I go online and learn new things; try to assimilate the bad news of the world. Watch old movies! While there is no cure, it is amazing how a little attention and kind affection can do a lot when it comes to dealing with PN. I feel lucky in that respect. I recommend giving it as well as getting it!

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