Other than being spectacularly flat, my feet gave me no trouble for my first 72 years. True, when I stepped out of water, the tracks my feet left would be completely filled in — no arch. And the noise of my footfalls was “flop flop flop!”, like walking in swimfins. I was even told, when I took my Army physical, that the flatness of my feet would disqualify me from the draft! But I was a volunteer, signed up to serve, and went anyway.
Army doctors tried to “fix” my feet, wrapping them in hot plaster, molds for special-design “orthotics”, plastic inserts for my shoes. At one point, I was given a “buck slip”, six weeks’ restricted duty, prohibiting me from walking more than 100 yards. About all I had to do was walk to the gym and lift weights, which I loved, or saunter to the mess hall and eat the Army’s alleged food.
Presently the doctors got bored and quit trying. My feet were still fine, still flat. The only time they hurt was when I put those lumpy plastic things into my boots.
So I threw the orthotics away, and quit thinking about my feet.
Until about six months ago…
There was a torture called the strappado, where the soles of the feet were flogged. Apparently nerves in the body end up in the feet, and to be hit there is excruciating.
Why do such thoughts occur to me now?
About six months ago, my feet developed numbness and pinpricks; odd sensations, like wearing too-tight socks, when you were not. Then it got worse.
“Peripheral neuropathy”, said the doctor, “PN”.
It is not rare. Twenty million Americans have some form of PN right now, according to the National Institute of Neurological Disorders and Stroke (NINDS). There are over 100 varieties of this nerve-damage disease. It is seldom life-threatening, but some varieties (Guillain-Barre’ Syndrome) bring paralysis. Some are side effects of larger diseases, like diabetes: some are caused by trauma. My paralyzed son Roman has it in his fingers, as a result of his spinal cord injury. Some are nerve-insulation diseases, where the myelin nerve covering is not right. Some varieties go away over a period of years. Others stay with you forever. My son’s advice? “Get used to it, Dad.” I did not find that comforting, somehow.
Pills (non-narcotic) moderated the symptoms, numbing the numbness.
But it did not go away. Dealing with the not-quite-pain was a constant struggle, like holding my breath. If I relaxed my guard, I might snap at Gloria — which, if you know Gloria — is not advisable. Sometimes in my sleep, she says, I make moaning noises until she pats me on the shoulder, and calms me down.
Lately, the condition is gaining new territory. It had started with my feet, then the ankles, the calves, and now it seemed to want to be everywhere.
“Oh yes, it can spread up your legs, and then jump across to your arms,” said the doctor cheerfully.
I think I can feel those faint tinglings beginning… in my face.
More troubling, I tend to trip and fall more often now. If your feet are numb, it is apparently easier to bump into things, or lose your balance.
This is a blessing I could live without.
Can it be fixed?
Some good people are working to find out.
Like Dr. Robert Baloh, of Cedars Sinai.
Working with a grant ($3,031,737) from the California stem cell program, Dr. Baloh is attempting a three-step method to develop a possible cure. He intends to:
One: “develop (stem cell) lines from patients with…peripheral neuropathy…(This will give him a “disease in a dish”, that he can work with.)
Two: “genetically correct the defect in (the) cells…and differentiate them into Schwann cells, which will (insulate) the (nerves)…
Three: “transplant the genetically corrected (cells) into a rat…to determine whether these cells…alter the disease progression.”
How is he doing? Quoting from his CIRM document:
“Overall we have made excellent progress…We have successfully generated (stem cell) lines from…patients and characterized them (turning them into the needed Schwann cells); validated our approach to genetically “correct” the mutation in…patient(‘s) stem cell lines… and validated a rat model…to be used.
“We found that (the cells) could engraft to form myelin…in (rat models similar to) neuropathies in humans.
“This demonstrates for the first time proof of concept for pursuing cell therapy for diseases of peripheral nerves outside of simple nerve injury.
“Remaining hurdles include the lack of…technology for generating human…(stem cell) precursors for transplantation that (can) generate myelin…”
They are making good progress with rats — now they must do it with humans!
I had the pleasure of a conversation with Dr. Baloh a few days ago, and it was a relief to hear him talk about the disease as something to be systematically fought.
“People with the condition try to just make it through their day, but it is more serious than at first appears. Trying to keep your balance in a darkened room, for example, is more difficult, and falls can happen with potentially devastating consequences. And some of the varieties are life-threatening.
“Some kinds are inherited; some are not. The variety we worked on is called Charco Marie Tooth disease.
“What we learned was great; making new kinds of cells is valuable, and still difficult. We succeeded in making Schwann cell lines from patients (to reduce or eliminate the problem of rejection)…We used genetic engineering to make the needed changes, and achieved good results…It would not have happened without the help of CIRM.” — Robert Baloh, personal communication.
Alleviating peripheral neuropathy is yet another reason to keep the California stem cell program healthy and funded. When it runs out of money, we need to renew it.
Selfishly, I would like the scientist to develop what is needed to alleviate my personal peripheral neuropathy.
Or, to use the scientific terminology:
“Fix my feet, Doc!”
Don C. Reed is the author of the new book, “CALIFORNIA CURES: How the California Stem Cell Research Program is Fighting Your Incurable Disease!”, from World Scientific Publishing, the publishers of the late Stephen Hawking.
For free information, including a newsletter, and 50 benefits of the California stem cell program, visit the author’s website, www.stemcellbattles.com.