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.

Breightenbush

Twice a year, once in February and once in August, the Radical Faeries gather at a hot springs resort in central Oregon called Breightenbush. There are about 180 of us, maybe a few more. Most stay in shared cabins, some in tents and at least one in the main lodge, and that's me. I'm having a rather bad case of muscular dystrophy these days and can't manage the stairs into the cabins but the lodge is accessible.

I shared a ride from Vancouver with 2 rather unfocused drivers, a gay couple whose wedding I attended just over a year ago, who managed to get lost and so consumed with errands along the way that they stretched an 8 hr trip into 10.5 hrs. If they had bothered to buy a map I would have navigated for them, but that wasn't going to happen when that afforded them so many reasons to nag at and accuse each other. Really, just because we've won the right to marry up here doesn't mean that we should do it. Actually, it was quite a bit of fun when I just zoned out and promised myself not to get involved unless they asked.

The gathering felt wonderfully comfortable this time, this being my 4th one in three years. I must have known almost a quarter of the guys and they were happy to see me and full of compliments. I usually get sick on Breightenbush food, though it is healthy vegetarian fare, because they use a whack of ginger in many dishes and I am allergic to ginger. I'm the only person I have ever met who is allergic to ginger. In spite of me specifying my allergy on my application no meals were labeled when it was used. I learned that curries also have ginger in them, which explains why they give me trouble too. So I did OK with the food at the gathering but the highway food upset me each day. Thank gawd for Immodium.

One of the best things about the gatherings is of course the hot pools, but the weather was so hot (over 100F, or about 40C) that soaking in the pools was uncomfortable. I only visited them early in the mornings when the air was coolest. The other problem was the wet winter that provided a record number of flies and mosquitoes. The flies where everywhere inside and out, crawling on the food, the furniture, our clothes (the parts of us that were still covered up) and our skin. During the hottest parts of the day I stayed in my somewhat cooler, north-facing room in the lodge that was somehow free of flies. I slept so much the first day after we arrived but it was too anti-social to remain alone for too long.

One of the my favourite aspects of Faerie gatherings is all the gender-fuck drag and other outrageous costumes. Those who dress up arrive late for dinner and parade around the front deck, through the lobby and around the dining room before visiting the back deck. Hoots, cheers and the tinkling of forks on glasses follow them as they move around. Most never parade but others come with trunks of outfits. I don't mind relaxing in a T-shirt and a pair of embroidered silk granny panties, in a comfortable shirt, negligee or too-too but I can't be bothered with all the other accessories like make-up and wigs. I love being a boy but prefer to wear comfortable clothes without drawing too much attention to myself.

There was a fashion show on Thursday and a Talent/No Talent show on Friday, both held out on the lawn in the evenings when the air began to cool down. They were both fun and funny with very little "No Talent" in the talent show. The auction to raise Faerie funds for those who cannot afford the whole fare was held on the last night. My "Penis In A Too-too" window never made it. I managed to crack one piece in the window when I was loading it into the car. The driver ran a large speed bump somewhere in WA state and broke another piece and then shortly before the auction it was broken again by someone stealing a peak at it or perhaps by throwing something on top of it. I just wrapped it up and took it back home. :o(

My good friend Bad Dog (aka Joe) drove me back to Vancouver after stopping for a night in Salem, his new home. It's a pretty little town and it's pretty quiet too. BD surprised me with a knitted comforter/blanket for my bed. I was really blown away. He showered me with other smaller gifts too, a Bodem coffee press, a little toy and other souvenirs. What a treat to be away from all those flies, and the unbearable was replaced by cool rain.

Pharmaceuticals

"If you get any sweeter, Lou, they'll have to give you insulin."
- a line from the Mary Tyler Moore Show

Diabetes is just another something going wrong with my body. At least unlike muscular dystrophy there are medicines that help control it. I was diagnosed four years ago when I turned 50. So far there is no apparent damage to my eyes, the circulation in my feet or my kidneys. It was caught early on before it did any damage. My doctor and I had been watching for it as it runs in the male side of my family.

So far I have not needed anything more than Metformin to control it, a pill that suppresses the liver's ability to release sugar after digestion. Unfortunately, Metformin, although inexpensive, has many side effects such as cramps, gas and diarrhea. For the first 3 years I could not take a whole pill at a time. The doctors have wanted me to increase my dosage but my system couldn't tolerate more that 2 per day. Gradually my blood sugar was rising but the good doctors at the St Paul's Diabetes Clinic would not prescribe me insulin or a new medicine that works with the body's insulin to help it open the doors to the cells to let the blood sugar in, not at least until I tried once more to increase the Metformin.

Last November I was suddenly able to tolerate more and I doubled my dosage. My BS levels took a nose dive down into very acceptable levels. Months went by without major digestive problems so I began to assume everything was alright. I had more tests done for the Clinic last May but I was on vacation when they set my appointment and they did not set me another one when I asked. Normally I would have followed up but I assumed everything was fine. I eventually checked with my GP who always gets copies of my tests and I learned that they had risen again, even higher than they had been before. Yikes!

Visions of living life with blindness and amputations haunted me, especially after getting that out-of-control reading on Pride Day afternoon of 18+, more than double what it should be. I set about doing bringing my diet and BS levels under tight control. First, I fasted for almost a day until the levels fell. Then I started a record on my computer that tracked when and what and how much I ate, when I took my pills and what the corresponding BS levels were. Of the 29 sample tests I have done in the past week, 21 were within acceptable levels. The increased amount of Metformin really upset my system though, but I have my diarrhea under control with the help of Imodium.

This is how the pharmaceuticals get us by our short and curlies and wrap us around their little fingers! One drug causes side effects that can only be controlled by another, and so forth. I am fortunate that my muscular dystrophy has no available treatments. I admit though I'd pay a fortune to get my muscle strength back. So far scientists have found two cures (so far only tested on animals) that not only stop the erosion of one's strength but totally reverse the muscle loss. The problem is that muscular dystrophy is quite rare, even when you combine all the 40 known types, so there's not much demand for treatment from a pharmaceutical company's point of view so research has stopped. Besides, they don't want to invest in permanent cures. Where is the profit in that? Sometimes it's hard to keep one's sense of humour but I am tempted to laugh at my situation from time to time.

Today my friend Danzante, the big guy on the right below, told he has heard of a new drug in the final stages of testing that (of interest to him) increases the body's metabolism to burn fat and increases muscle growth (of interest to me). It's like a gym workout in a pill form. Yeah!! In fact, in my sweetest dreams, it might also cause the body to burn off more blood sugar to make that muscle. Bonus! Or it might increase the blood sugar but then I might be able to get an insulin prescription for that.....

It leaves me wondering though what side effects it might have.....

Pride Day

A week ago Sunday was Pride Day. I spent from 9:30am until after 3pm on the deck of Milestones restaurant at the corner of Denman and Davie with five friends watching the phenomenon of Vancouver's Pride Parade. There were supposedly 500,000 people watching, which is rather scary, though I doubt I could see even 1,000.

The patio of Milestones has to be one of the primo spots to watch the parade from as it is reasonably comfortable seating and it is raised a metre or so above the sidewalk, making it easy to see and take pictures of the passing 164 entries. We arrived more than two hours before the parade, which because of its added length this year, took quite a while to reach our location more than half way along the route.

To get a seat on the patio on this day takes good connections. One of my friends, "Aunty Tinkerbell", has those connections with the staff as this was once his favourite hangout. As usual, he brought 'accoutrements' which this year were rainbow feather boas and his own hat which featured a swirl of netting and silk butterflies around it. He's the one on the right above with our waitress and her penis tiara.... Immediately below them in the feather boas are, from left to right, Randy (Mentor Aum), Peter (Rainbow Strongheart), Gerry and his husband Danzante.

The other nice aspect of the patio vantage is that it is in the shade, at least until shortly after 1pm, and that means less sunburn. So many places along the route have no shade and no place to sit. My feeble legs could not hold me standing for a long time and without this wonderful seat I was not prepared to watch the parade. If AT ever loses his priviledges with the restaurant I may never see another parade.

As I said, the route was longer. It still goes south-west along Denman St, turns south-east on Pacific and then Beach Ave to Sunset Beach, but this year it started on Robson St and went downhill (northwest) to reach Denman. It now takes more than 3 hours from start to finish.

It was a decent parade with some decent floats, not too commercial all in all, but it could have used more clowns or humour in general and definitely more music. It's too bad the Radical Faeries didn't have an entry because the parade could have used some of the "outside-the-box" imagination and irreverence. There was one terrible incident up in the Davie St Village when someone went biserk and started attacking patrons on a patio at The Majestic bar with a hammer. He sent several people to hospital, including two staff, though none of the injuries were life threatening.

After the parade I walked with several others along Pacific to Auntie Tinkerbell's new place near Davie and Pacific about 2 km away. There we had a pot luck dinner of sorts. I didn't eat much, just some chicken, corn chips and a few veggies. Two friends were kind enough to give me a ride up the hill afterwards. I measured my blood sugar once I got home. It was over 18 when it should have been no more than 10!

Writing

I don't like calling myself a writer. It feels pretentious. I prefer to say I write. But then I haven't actually written during much of my life and certainly not regularly, at least not for the long haul. And I'm not published. That actually feels like a relief. Gawd nose what my life would become if I ever became a successful writer. I don't really like idea of notoriety, of interviews and having to travel from city to city to speak to burgeoning crowds of half a dozen or more to flog a book. Then there would be the publisher's expectations that I produce yet another marketable creation. Makes me want to hide under the covers.

I am part of a writer's group, just three of us actually nearing the ends of our respective first novels. Ronnie's book is about the lives of four different gay men between 1979 and 1983 told in four parts, one for each man, as they intertwine and link to one another as they move across western Canada. It's almost like a play in that there's little author comment and it is told in the first person, present tense.
Stitch's book oscillates between two very different lives, a 12 year old boy in central British Columbia living on a farm and an underemployed 33 year old gay man in Seattle, whose lives never intersect at first but they seem to reflect each other. They are both having a rather traumatic summer. They meet at the end of the book 20 years later at the historic first Radical Faerie gathering in the New Mexico desert (I think).

Mine is an historic piece set on the north coast of British Columbia. It traces the impact of European (British Anglican) culture on the native Tsimshians of that region over a period of 50 years. It is told through the eyes of a gay Tsimshian man who is raised in a traditional village, then around a White trading fort where guns and alcohol start tearing his people apart and then in a Christian Utopian village guided by an Anglican missionary. It's half fiction and half historically--to the best of my ability--accurate. I wanted to reveal a very interesting piece of Canadian history, the story of this amazing Christian community that thrived for 20 years but which has now almost totally been forgotten, and detail what happened to native people in Canada, by far the weakest link in Canada's human rights record. I also wanted to show how Anglican Victorian and Tsimshian values clashed and how someone might survive spiritually after the life he has discarded all his traditional values to embrace betrays him completely.

I loved the idea of having my first novel being an historical one. So much of the plot is decided for me. Each historical event or recorded happening is like a fence post for the novel, which itself is the fence. Then it's only a matter of creating the characters and plot details that will move the plot believably from one fence post to the next. Of course it means much more research if one cares about authenticity, which I do. And research is not always rewarding or successful. If you find anything useful it always comes out of some text like a dried flower that you find pressed, forgotten and missing a few pieces between the pages of a rarely used dictionary. You then have to try to imagine what it would look like rehydrated, reconstructed, growing and blowing in the scented breeze in amongst the all the other flowers around it. The other challenge in trying to write about a lost culture is to reveal it slowing and clearly, step by step without sounding like an encyclopedia, while the plot compels the reader along. If you don't explain enough you will lose the reader and if you explain too much.... well, you know.

It is a lot of work, but more than that too. I let the whole project go to fallow three years ago after it had soaked up over half my free time for 17 months. It seemed to grow just to big for me so that I lost my clear perspective of what I was creating. It was over 300 pages at that time.

The other thing that bothered me at the time is the degree to which the writing 'took over me'. I honestly feel much of the time that I had little to do with the writing. The words seemed to come from elsewhere, some other plane perhaps, and that I was just channeling what someone else was writing through my mind and body. After all, none of the characters resemble anyone I know but they each come out distinct and well-formed (I think). Whole conversations and developments came out of nowhere without planning. Often I'd sit down to write just to find out what was going to happen in the plot that day. I'd get so engrossed that I'd short-change my sleep and forget to eat meals. My whole body seemed alive, filled with some strange energy I always associate with creating. Amongst my friends I became a total bore, only talking about what I was writing and having little interest in anything else.

Of course, friends don't want to hear about it because they don't want to read it. They fear they will insult me with their lack of enthusiasm or by saying something they shouldn't. I don't blame them--I've read some stories that really were poorly done, though I'm not usually very critical. Sharing creative works is almost as dangerous as borrowing and lending money between friends. Something could go terribly wrong and destroy the friendship. I don't fear that but they often do. I love some of the excuses they make up though.... "O, my doctor says I should avoid reading because it might cause cataracts," or "I'm sorry, I only read cereal boxes..." Well, I suppose one can't go around with an open mind all the time. He might get something in it. :o)

Somewhere along the line I have lost my fear of receiving feedback, a necessary survival skill if I ever do find a publisher. What I'd like to do is to lose my need to be interesting or to win people's approval. Then of course there's my fear of publishers......

"I love deadlines. I love the whooshing sound they make as they pass by."
. - Douglas Adams

Outrageous!

I finished my window "Stepping Out" this morning. On Sundays I usually meet the local Chapter of the Radical Faeries at a local coffee shop. I brought my camera which had the photo of the window still on it. It got rave reviews or at least lots of laughs. My 18-yr-old nephew paid me a visit today. He brought a buddy along. Before they arrived I hummed and hawed wondering if I should leave it in the sunshine of the window sill or hide it in my studio. In the end I left it in plain view and they loved it. Kids these days are so cool. His buddy, who had never met me before, and who has always had a very sheltered life, just loved it and wanted to photograph it. Something to tell his girlfriend I guess. :o) I suppose if one is going to be a gay uncle he has an obligation to be outrageous, or what's the point?

So I'm auctioning it off at the Radical Faerie gathering in Oregon next month. Any guesses on what bid it might fetch? I am thinking of doing a series of these, penis action figures. It could be all the new rage!