I had a situation yesterday that I hope not to repeat. I'm mentioned here before that my health is not good. One of the diseases that I have is called myasthenia gravis. The short, oversimplified version of this particular disease is that my body does not produce what I'm going to refer to as 'muscle gas' - that which makes the muscles go. Any repetitive action of a muscle group exhausts it in short order. i.e., I can walk to the mailbox usually, but after those twenty steps, my legs are shot and I'm not going to make it back. Push it and the body will steal 'muscle gas' from any available source (re: another muscle). The problem is, the body makes no discrimination when it steals from other muscle groups. This time it might be my biceps - next time it might be my heart. This time it might be my abdomen - next time it might be my respiratory system. In those cases, my heart stops beating or I stop breathing. Pushing oneself is not a good idea with this particular disease. So... tutorial over:
I'm at the pharmacy yesterday refilling my 4,298 prescriptions (okay, only fourteen but it feels like the aforementioned number) and my legs quit. Another symptom of this, btw, is when tired - the speech center stops working right and I start slurring my words. Keep pushing and things go downhill fast after that. I'm in the pharmacy, the truck is across the street and I have to go now before I fall. I can't wait for the prescriptions. So, here I am, trying to get across the street and staggering...and a cop flips a U-turn. A minute later:
"Stop. Come here."
I can't, and try to tell him so but my speech center is kaput at the moment and I'm slurring so badly that he can't understand me. The wife is trying to save time to get me home and so she went into Safeway while I was in the pharmacy across the street...I had been doing okay at the time. Anywho, she comes out a few minutes later to find me flat on my face and in handcuffs in myasthenic crisis. I've got a note in my back pocket for the ER staff in case of emergency or, I suppose, for situations like this, but I can't make my muscles get it - and frankly, it probably would have been dangerous to reach back behind me with all the jerky motions I was having and pull it out for the cop. The cop won't let her come to me - and keeps drowning out her attempts at an explanation telling her to be quiet and get back...did I mention she's on parole?
She had the presence of mind to break out her cell phone and call 911 and loudly proclaim, "MY HUSBAND IS IN MYASTHENIC CRISIS. WE NEED AN AMBULANCE BEFORE THIS POLICE OFFICER WHO THINKS HE'S DRUNK KILLS HIM. HE IS IN HANDCUFFS AND FACE DOWN DROWNING IN HIS SALIVA."
That got the cops attention. Anywho, he sits me up then, and I'm getting a speech from the cop on all the things I did wrong to make this happen until the ambulance arrives and takes me to the ER. All the time I'm thinking - "Officer, I'm a retired, professional drunk - there's no way I would have come out in public like this back before retirement cause I know better."
WOW...That's frightening....I've never heard of that disease....Or of anyone that had it. Is there something you take for that that gives you any relief? I think I'd be scared to leave the house. That's down right scary Angell....God bless you.
Thanks, Stepchild. It's very rare...Aristotle Onassis died of respiratory failure as a complication of this disease, but there's no one else that I know of that has or had it. There is a drug that is prescribed to give me some relief but I don't notice any. The neurologist had me take 30mg three times a day for three days, then 60mg, then 90mg and finally 120mg - telling me to stop increasing when I felt some relief. At 90 mg's I was in worse shape than before though and looked up the drug and discovered I was overdosing. I immediately dropped back down and called the doctor. I explained what happened and what I did and he confirmed that I was OD-ing, apologizing profusely for not imagining that it would happen at that dose with me at my body weight.
Unfortunately, relief might be 5% or 55% - it varies widely amongst patients. So I'm taking it now just believing that I am getting some small relief that I just can't feel but that 5% (or whatever) might be the difference between life and death in a situation like yesterday. There are some side effects to the drug which prompts another four prescriptions but you take the good with the bad, I suppose.
I can appreciate the thought of not leaving the house - believe me, but it's simply not practical. The pharmacy was after a trip to my primary care physician for instance, and I can't simply stop going to the doctors. Anywho - I leave the house with my HP every time and nothings going to happen to me while out that isn't part of HP's plan. That provides the courage to keep on keeping on. I very much appreciate your thoughts and blessings. :)
I knew I had heard of someone else besides Aristotle Onassis who had this so I had to look it up to satisfy my curiosity. Christopher Milne, the son of the man who wrote the Winnie the Pooh books, and who the character Christopher Robin was fashioned after, also had it.
Oh man, Angel ... that IS scary ... thank God for your wife being close at hand ... I have a close friend in AA with MS ... he can work for a little bit before he 'gives out' ... he's in his late 40's and has been a great inspiration to me as have you ....
You're still in my prayers ...
Love ya and God Bless, Pappy
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'Those who leave everything in God's hand will eventually see God's hand in everything.'
How terrible, Angel! I am so sorry you have to deal with that as well as a cop that is obviously trying to make his ticket quota. I am glad you are still around--no thanks to "Barney"...it's to your wife's call. I was wondering, I have seen people wear medical bracelets and you may be able to get one made into a necklace. It might not make that big a difference however, if you had something medical related and you are wearing it especially when you go out, maybe it will. Hopefully there won't be a next time like that however if you have trouble talking, and can point to your medical jewelry, I believe others and especially officers will be aware that you are having a crisis situation and not an alcoholic related one. Another thing is that all police officers should be trained to recognize symptoms which can mimic intoxication. Slurred speech and loss of muscle control can also by symptoms of other major health issues....such as a stroke. BTY
-- Edited by betterthanyesterday52 on Saturday 21st of June 2014 05:56:08 PM
I edited my post a little....I just got fired up by what you went through. I need to go drink my herb tea, take some deep breaths and do some praying and meditation....I am not kidding about that.
I am glad you are going to get one of those bracelets. I know Ebay used to sell them. They may not be the kind you need though. Please keep us posted how you are doing. We care!
Thanks again BTY. I checked right after you suggested it and while I couldn't find any bracelets with my specific problem, there are those which they will engrave with what you need on them - which is perfect. I'm relatively young, American Indian - complete with long hair and so, I'm thinking he jumped to conclusions. Hopefully though, he learned something and won't be so quick to do so again...I'm thinking he's got to be feeling badly about his error now though. Hopefully he forgives himself and moves on. ...but no so much so that he doesn't feel obliged to give me a pass if he ever stops me for speeding some day. ;)
So sorry that your health is so critically uncertain and you had to suffer this unfortunate experience. Prayers to you. I would hope that anywhere you go and anything you do would be accompanied with someone by your side to keep you safe.
