For 10 years, 48-year-old Charles Kuhn has been battling the mysterious and usually debilitating disease multiple sclerosis. Though he has slowly lost the use of his legs, Kuhn is still pedaling. In fact, he'll be pedaling more than 150 miles through the Sierra Nevada from Graeagle to Sierraville at the MS 150 Bike Tour on Sept. 10 and 11.
He'll be pedaling with his arms and hands in order to raise money for the National Multiple Sclerosis Society and its Northern Nevada chapter. A cure for the so-far incurable disease, he hopes, is just a little research away.
What is MS, and how does it progress?
MS is defined as a disease of the central nervous system, specifically impacting the brain and spinal cord. For undefined reason(s) a person's immune system turns on itself and attacks insulation surrounding nerve fibers, leaving behind scar tissue (sclerosis), which prevents smooth transmission down the electrical wire, or nerve cell. This transmission interruption results in inefficient and sometimes a lack of muscle response.
There are three defined degrees of MS. "Relapsing remitting" is characterized by attacks resulting in different symptoms, such as muscle weakness, loss of sight, muscle spasticity, inability to walk, difficulty swallowing, loss of dexterity, etc. These events are usually controlled through management drugs or steroids. The second level is "secondary progressive." It's a progressive loss of functions over time. In my case, it has been the slow loss of leg strength resulting in the use of a walking stick and now a wheel chair. The worst level is "primary progressive." It usually results in an nonambulatory condition.
You didn't start showing symptoms until five years after a diagnosis. How were you diagnosed without symptoms?
I experienced an initial attack of optic neuritis that resulted in the loss of sight in my left eye. After being treated with steroids to restore sight, my neurologist conducted tests including a spinal tap and MRI, resulting in a diagnosis of MS. My symptoms then went into remission for five years, but returned more aggressively with muscular impacts affecting my mobility.
You had a bad reaction to several MS medications. Are there any other medications you can take?
I have been on three of the five common management drugs available for MS today. The ABCs, as the first three are called, had little or no effect on the progression of my disease. Two of them - a weekly and an every-other-day injection - resulted in my complete lack of mobility the day after injection. After being on these two for more than a year and a few months, respectively, I discontinued their use.
Drug number four, as I refer to it, is similar to drug number three, so I have no desire to go there. Drug number 5 is a chemo-therapy drug. I have serious reservations about trying to control one illness by creating a whole new set of ramifications. Drug number 6 was recently approved by the FDA in a hurry-up process. It showed great potential, then was withdrawn from the market after two people under its management care died. There are new drugs in trial stages, for which all MS patients, family and friends are hopeful.
Because of the different-symptoms-for-different-patient characteristics of this illness, my hope is steadfast behind radical breakthroughs via stem cell research.
You're riding a bike powered with your hands on a 150-mile trip. When did you start riding?
I acquired the bike in April and "played" at riding for a few months. At the first of July, my girlfriend convinced me there was no time like the present and I have been training six days a week since July 7. I of course use my hands to grip the hand crank, but the real work of pedaling is done by your arms.
How do you train for your trip and how is it coming?
Like any other sport, you train, train and train some more. There is no better preparation than riding, which I do six days a week with one day for recovery. I alternate days with hills vs. days of flats. However, the MS tour has some onerous hills that I lose sleep over, so I work on maintaining a steady tempo regardless of terrain and plan on a steady cadence seeing me through. I've been careful with my diet, practice good hydration and try to get a solid amount of rest every day. I would be more comfortable with another 30 to 60 days of training, but why put off to tomorrow what I'm silly enough to try today.
You are active in raising money for MS research. What is the hope that researches can achieve?
With this tour, I've been active in raising money for the National MS Society, which will benefit our local chapter in Reno and further research at the national level. I have three primary goals: To help raise any funds I can to support research; to support and speak to the potentials of stem cell research, not just for MS but for all debilitating, untreatable diseases; and to spread education about MS.
When I was diagnosed 10 years ago, I didn't even know what MS was. Many people today are in the same boat. There are so many terrible diseases that impact so many - cancer, Parkinson's, Alzheimer's, muscular dystrophy, Crohn's disease, and the list goes on. In this era of technology, I'm amazed our incredible medical knowledge hasn't been tapped to its fullest. My hope is for a marvelous breakthrough and cure for MS, which can lead to more breakthroughs in the small list of diseases I have mentioned, and in others for which no cure exists.
Research? Yes, of course I will support research. I will encourage it. I will pray for it. I will work for it. And one day I will ride a normal two wheel bike with my legs in the MS 150.
What recent advancements in research or technology do you think will prove most useful?
Stem cell research offers promise for disease modification in illnesses thought untreatable. The debate against it must be balanced against the potential for returning a healthy life to so many. More than 2.5 million people have been stricken with MS. The loss of productivity cannot be determined. The loss of simple pleasures in life cannot be determined. We have faith in each other to rely on. We have our faith, whatever faith that might be, to rely on. But for so many to have the potential of a return to normalcy quashed based on philosophical ideology is tantamount to betrayal. I whole-heartedly support stem cell research. It is the promise for the future.
How can people get involved in your trip and the fight against MS?
I am still raising pledges for my ride. A desire to make a pledge of $25 or more can be made on my personal e-mail of firstname.lastname@example.org or a pledge can be made on the MS web page www.nationalmssociety.org/nvn and by going to the MS 150 Bike Tour page. I am quite certain volunteers are still being solicited for the tour. You may call the chapter at 329-7180 to volunteer. If you can't volunteer now, ask the staff how you can help in the future, or make a donation to the MS Society to help find a cure.
What's going on?
MS 150 Bike Tour from Graegle, Calif., Sept. 10 and 11
How to donate:
Go to the MS Web page www.nationalmssociety.org/nvn and the MS 150 Bike Tour page. Call 775-329-7180 for more information.