Muscular Dystrophy

Marcel   33 years old NL


In the past, I did smoke weed once in a while,just for the fun of it. I was about fifteen years old then and with some friends we would go out for the night. It never went further than that and I never experimented with anything else. I hardly ever drank alcohol I worked as a chef in a restaurant and ended up unemployed in 1995 when I was no longer physically able to work.

I bumped my leg while playing around with a friend of mine. A small wound, nothing serious in itself, spread and turned into a large open wound on my shinbone. It turned into an abscess and bacteria attacked it, eating away at the flesh. It caused a hole of about five centimetres square on my shinbone and this exposed the bone and led to a deformation of my foot. As a result, I spent six months in hospital, with a cramped calf muscle and deformity of the bone tissue. After hospitalisation, I spent another eight months in a rehabilitation centre and when I left, it was to a specially modified home. Now I attend the Overtoom and V.U. rehabilitation centres, where they are looking at whether more improvement is possible, but that will mean additional surgery.

So that little wound caused muscular dystrophy. It spread to my hand and I have lost two fingers as a result. I used opiates for the pain: morphine and codeine. I took around seventy tablets a day. Sleep was impossible at night- time, although I did manage to nod off a little during the day. Then, after someone suggested it, I smoked a joint in the hope that it might reduce the pain. That turned out to be a great success.

Now I smoke around six to eight joints a day, and take a few drags when I can't sleep. I usually vary the kind of weed I use, but I always smoke homegrown weed from the Netherlands, not foreign weed. There are certain kinds that I don't smoke, because they make me nauseous and I don't want that.

The effect of medicines such as morphine is that they make you feel as if you are at the far end of the world and you are no longer really aware of what is going on around you. A joint cams down your thought processes and allows you to remain aware of everything.

The pain in my hand gets worse at a temperature of about eight to nine degrees. Although I have a high pain threshold, it becomes unbearable. The weed that I smoke at times like that reduces the pain by about seventy-five percent and that means one hundred percent benefit for me. I can achieve the same effects every time I smoke by alternating different kinds of weed. With prescription medicines, this is usually not the case.

The prescription medicines I used in the past damaged a part of my brain and I have lost my short-term memory as a result. This really bothers me. I went to the off centre and registered for work, because I would like to try to start working again. It would have to be an office job. I would like a temporary job again and this is partly due to my use of marihuana. I really had to go down on my bended knees, in a manner of speaking, to get back to work again. It took a very long time and I went there around six times, but I did get permission in the end.

Now I am attending a special school that has been specially adapted for wheelchair users. I am able to take a couple of steps in a room, but I need a wheelchair when I leave the house. I must say that I am really looking for- ward to this education. My doctor mows that I use weed and he prescribes it for me, unofficially. I did ask him to allow me to go and get it myself. That way, I can determine what kind of weed I want to have and also enjoy some social contact. Sometimes, when there are other people sitting in the coffee shop, I have a cup of coffee or chocolate milk and smoke a joint with them before going home.

I suppose that I use one and a half to two grams a day and I have a patient pass, which gives me a fifty percent discount on weed from the coffee shop. Otherwise, this would be a very expensive hobby and as I am on the dole...

I don't make any secret of it and the people that are close to me support my using weed. I smoke it while walking on the street, sitting on the balcony, or wherever, and I am not ashamed of it. My friends say that if it helps me, I should definitely use it. The only problem is the illegal aspect, as it is still a soft drug. I also have a TENS (transcutaneous electrical nerve stimulation) device lying around, which works with electricity to ease the pain. I also have Cathaprezan as a painkiller and sleep medication. I hardly ever use the TENS device or the Cathaprezan because they have hardly any effect. Sometimes, I take an Immovane to help me sleep but I still wake up at night and then I take a few drags of my joint. I go out to play cards once a week and before I leave the house I take a few drags. play for about three hours and those few drags help me throughout the evening. I have absolutely no urge to smoke while I'm at the card game. When I get home, I take a couple of drags before going to sleep.

I got the small wound, with its disastrous consequences, in 1995 and I started smoking weed in 1997, which enabled me to cut out 95 percent of my medication. I spent almost a year in bed. I have undergone seventy operations in the last four and a half years and at one time I had nine operations in one week. Twenty-eight of these operations were on my hand and all the others on my leg They performed amputations, opening the hand and making holes in it. The pain is indescribable. I suffer from chronic infections and decomposition in muscle and bone tissue. I have five to six broken bones in my hand and sometimes you can hear another one snap

Weed improved my life one thousand percent. I had no way out,just pills, pills and more pills, but now it's as though I am walking in a flowered medication. An evening with weed is delightful and now I can sleep reasonably again. I only used to get two or three hours sleep a night, but now I can easily sleep for six hours. Most amazing of all, after having smoked weed for about seven months, the wound started healing! This isn't really so surprising. When I started smoking it, I felt a lot more comfortable and people around me also noticed this change in me. I think that when you feel well. your body can heal more easily. You could see the wound heal, new tissue growing, and new skin appearing! I hadn't seen this in the three years before that and to me it was the discovery that saved my life.

During the initial phase of the disease, I used 240mg of Valium a day, plus a whole lot of other rubbish! I ended up at the drug rehabilitation centre, because when you use so many medicines for such a long time, you're asking for trouble. I had myself admitted and had to go cold turkey; the hardest cold turkey you can imagine. The side effects of the medicines I used caused me more pain than gain-As I mentioned earlier, I suffered brain damage, have a very bad stomach - there are holes in my stomach - and got a rash. Some of the medicines caused new infections! And as if that wasn't enough, the medicines also made me terribly aggressive. I had never hit anyone in my life, but all of a sudden I saw red and started hitting one of my best friends. I am not an aggressive person at all, but the medicines caused blackouts and I started fighting with everyone, throwing chairs, etc. I have never seen anyone who smokes a joint acting in this way. I behaved like an animal towards my partner and this was no fun for her either. She just didn't deserve it. Once, I took my medicines and my body stiffened completely. My jaw pulled side- ways. My partner started crying. My daughter was crying. They thought I was having a heart attack. My doctor and the ambulance arrived and it turned out this was simply the side effect of a medicine I had been given, for which I hadn't received an antidote. They gave me an antidote injection, which oy started having an effect four and a half hours later. Those four and a half hours seemed like an eternity. No, never again. The side effects of medicines are hugely underestimated.

I have already lost two fingers on my right hand and might lose my hand completely in the future. That's what they give me the pills for, but they don't help at all. This is not the way things work. I can't just give up. I want to hold on to as much as possible and make sure that my situation remains viable. I think people should take a different outlook on soft drugs and not associate a joint with drugs such as heroin and cocaine. It's not as if someone who smokes a joint is definitely going to start using heroin or cocaine as well. These are two completely different things and are in no way connected. You smoke a joint and you feel well and can function normally. And when its effect wears o&, you have no hangover, nothing at all. I have seen people trying to give up alcohol and they are complete wrecks. A person with a joint looks healthy.

I knew a girl of23 whose MS was in an advanced stage. She started smoking weed and lived on for a few more months and those few months were made bearable for her. I visited her every day to share a joint with her and she really enjoyed herself, playing board games or just having a chat. Her muscles didn't function very well anymore, but she could still do some things. After she smoked marihuana, her arms were a lot calmer and her spasticity was reduced, so that you could really see the benefit she got om it.

I'm all for weed being prescribed to people with a serious illness, if they want it for themselves, and for it to be included in the health costs that are covered by the insurance companies. When you think of the cost of manufacturing pills, they could save billions by prescribing weed on a medicinal basis more often.

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