Muscular Dystrophy and IACAR

I think I have had MD all my life. I was a skinny kid and was never able to see much muscle growth from working out in a gym. I'd just tone up and then "plateau" so my memberships were always disappointing. Then when I reached 35 and hormonal changes that occur then my body gradually started to deteriorate. I lost the ability to run up stairs two at a time and I put this down to simple aging. I began to lose the ability to sit unsupported for 20 minutes while I meditated and keeping up with my friends while hiking up hills became an increasing challenge.

At the back of my mind I knew something was wrong, that I was having more difficulty than I should but I was very athletic at that point of my life, often spending whole weekends cycling up to 300 km just for fun and exploration. But while other cycling friends in their late 30s continued to increase their strength and stamina beyond 40 mine was gradually waning.

But it wasn't until I started falling without warning at age 42 that I began to become concerned. At my 43rd birthday I decided to join a gym and get a trainer to strengthen my leg muscles, but when she tried to get me to do lunges with weights I always fell over sideways. She knew something wasn't right and sent me to a specialist in sports medicine who in turn sent me to a neurologist who bluntly and mercilessly revealed the truth of what was happening to my body.

MD is not one disease but a classification of any type of disease that causes muscle wasting. Lou Gehrig's (ALS), Becker's and Duchenne's are three better-known types. No one knows what type of the 40 known types I have, though it is a type of limb-girdle dystrophy that will not likely be fatal as it is not spreading to my heart or diaphragm. Mine is also very gradual, other than that the only thing I have learned is that in many cases as my muscle cells die through exercise, stretching or lack of use they are being replaced with fat cells instead of muscle or not being replaced at all, which is why my strength is waning. Over exercise, such as using weights at a gym or rigorous cardiovascular exercise accelerates the muscle loss, as does lack of exercise. My type of MD is very gradual. I was diagnosed in June of 1997 though I probably started losing strength around 1989 or so. Now though I am reaching a critical stage where my ability to walk and move about is becoming increasingly tenuous. At moments I feel like it is like a quicksand and I have reached the point where I have sunk up to my neck. It is difficult to imagine what life will be like in 3 or 4 years.

Having my type of MD has many advantages over having any other type of serious disease affliction. It is not painful, unless I fall, doesn't come with terrifying surprises and sudden turns such as cancer or AIDS and it is very inexpensive since there is no treatment or medicines that slow or reverse its steady advance. I have tried many things: acupuncture, vitamin therapies and gentle exercise with no apparent changes in the rate of erosion.

But cures and treatments are 'just around the corner'. If you ever get a disease like this don't listen to your friends when they say "Never give up hope!" Hope is the first thing you should give up because to have it dashed against the rocks of disappointment is to have the floor in the room suddenly disappear over and over again, each time filling you with a sickening horror that races up your spine and leaves you crippled and whimpering for weeks. No, it's just best not to think too much about the past and things you once could do or the future and the things you might soon not be able to do.

In 2004 an American scientist discovered a way to modify the muscle-producing genes so that the body would automatically create more muscle and overwhelm the cause of the dystrophy and even reverse all the muscle loss that has occurred. He slipped the modified genes into a harmless virus that spread throughout the patient's body and all muscle groups started re-generating simultaneously without any apparent side effects. All this was done on animals. Then experiments were started on humans with one of the most horrific forms of MD, Duchenne's, which cripples and then kills children. Duchenne's garners the most sympathy and research funds but the Duchenne's molecule is also the largest so finding a virus cell large enough to carry it became the stumbling block.

Then, 3 weeks after my MD specialist told me there would be no significant developments coming down the pipes for a few years, a new treatment/cure was announced using brain stem cells. In a few weeks golden retrievers who could scarcely walk were up running and jumping fences again. Then news of the research stopped.

The bottom line, as I mentioned a couple entries back, is that research companies, the big pharmaceuticals I suppose, aren't interested in developing a cure. There's no profit in cures that require only one treatment. I imagine they buy the rights and sit on them to prevent them from being further developed, much as General Motors buys patents of renewable-energy "green" cars to prevent them from being manufactured. They needed a product that would not cure but was an effective treatment over time.

Last year that happened. Schering Plough developed a new drug which they called IACAR, which it plans to market under the name "Acadesine" that tricks the body into thinking it has 'hit the wall' that marathon runners hit when their bodies run out of carbohydrates and begin to consume fat cells that are harder to burn. Literally, it causes the body to consume fat and replace it with muscle cells. Rats who were treated with no treadmill or space to exercise gained 55% muscle strength in only 5 weeks. No doubt this will be the next big vanity drug, perhaps bigger than Viagra since both men and women and more age groups will want to use it. Goodbye gym industry and goodbye MD.

But hold on..... it's not that easy. In spite of people dying from MD every week, federal authorities have held up research and release of Acadesine out of fear that Olympic athletes might take it and no one would know, so all efforts were switched for a year into developing a reliable test that would show if someone had taken it. Now the other huge stumbling block is that a human would require 10 to 15 grams per day and at present the price is $120 per gram. Perhaps that will drop drastically once it is released for public consumption but even still not many will be able to afford it even at 1/10th of its present price tag. (No doubt, like Viagra, it only cost 15 cents/gram to produce.)

There are still obstacles to doing human testing it seems, but after years of constant deterioration and frailty I am beginning to accept the likelihood of recovering much or all of my lost strength (and maybe more) in the next couple years. But it's still a strange concept and I am not quite ready to invest my hopes in something that looks promising but which is still tentative. I am trying my best not to feel impatient and anxious about its release. Besides, who knows what the side effects might be. Still, any improvement would part the clouds and let me love life again. The thought almost makes me want to pray to a fictitious gawd. Almost. I'm not so desperate to embrace an imaginary friend yet.

Letting go.....

Over the past summer several of my closest friends seem to have dropped off the face of the earth. One couple decided to move back to Tennessee to live in a tent in the woods on the side of a mountain in communicato, away from the trappings of modern life. A friend of theirs we shared in common stopped visiting after they left. Another moved up the coast 3 months ago and hasn't answered my e-mails or phone calls since, but he still finds the time to e-mail jokes to his group mailing list so at least I know he's alive. And another good friend has been consumed by a new house, a new marriage, a new job and a new baby boy-- a combination that would definitely kill me!

To make matters worse I also felt it necessary at this time to terminate a long standing friendship with an oversees friend who was once very dear to me but who had become increasingly disinterested and inconsiderate. It was a painful but long overdue decision. Last spring he told me he is still worried that someone might find out that he has a friend in Vancouver, as if our friendship itself is an embarrassment to him even though he has come out to his family and has had bfs who have met his family.

I suggested we spend a couple weeks to reacquaint ourselves last summer, hoping this would help cement our friendship and make it seem less of a threat, which is retrospect sounds rather forgiving of me. I even magnanimously offered to pay his airfare from Europe. But after waiting for over half a year to get an answer to my offer, I had a pain in my chest growing like a cancer. I decided to take action so my situation would not feel so pathetic. I deleted his e-mail address and saved messages so that I would have no way of writing to him until he wrote to me again. Next week I was planning to have my e-mail address changed too. He probably hasn't kept my address and he wouldn't likely write a real letter anyway, so e-mail is the only way he has to contact me.

Then 2 days ago I received a newsy, unconscious e-mail from him with no reference to my ignored offer. I pondered which I should do; write back to him but come off cool and disenchanted, tear his head off by recounting past injustices, give a sarcastic response making accusing inferences, make him wait 7 months like I did for a response or simply never respond at all. In the end my wiser side won out. I wrote him a strong letter describing how upset I had been and how our friendship won't continue if he continues to be ashamed of it. Duh!

All of this has left quite a hole in my chest that lets the cold autumn winds whistle around my heart, so to speak. Nothing seems to warm me up and life feels empty. I guess I need to look at the autumn winds as part of a healing process and learn to let go of those people and things I am holding onto that no longer add to my life--like letting go of autumn leaves. I want to feel less needy. Actually, I haven't felt this needy in years, since the late 90s in the 2 years following the news that I had degenerative muscular dystrophy and there was no treatment. The depression isn't so deep this time. I can and will pull myself out of it as I adjust to my changing situation.

I have tallied up my list of closest friends and I have more living out of town now than ones who live convenient visiting distance from me. That needs to change! I have to get out more and maybe even try Internet dating -- a true Halloween nightmare to a man over 50 with an obvious disability. I have to look for other groups too, just for the social contacts. It's friendships I would be seeking mostly, not sexual contacts, though.....

Tomorrow night I will attend a "Men In Touch" event organized by Sequoia (a healing touch specialist) and Alfred dePew (a management consultant) that will an evening of learning and building intimacy. My mind and heart are open to it. I just hope the exercises aren't going to be physically impossible or awkward for me to do. I hate being an imposition to a group.