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Topic: Wouldn't this just Pi$$ you off! (Read 530 times) |
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Dave_Emond
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Wouldn't this just Pi$$ you off!
« on: Sep 24th, 2003, 2:02am » |
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Hey Gang,
Just need a chance to talk right now while I still can.
A while back I posted about being at the end of my rope and almost committing suicide.
Seems I've delevoped some sort of new neurological disorder along with my Chronic CH.
This started back in late August and has gotten worse each day. No one could ever have convinced me that I could feel pain of any sort during my Cluster attacks, but it is happening.
Although I don't think CH is related to whatever it is that is destroying my body, the pain shooting through now my entire body feels harsh enough to compete with it.
I've been moved up to "urgent" need of examinations to try to find out what is going. They've drained half my blood it seems, had a spinal tap and MRI this week.
Can't walk most of the time without assistance and can't sleep. Actually, I'm afraid to sleep. Woke up a few mornings ago back to complete loss of any control over my body. The pain was unbearable. I quit sleeping for a couple days, then went ahead and tried again. Woke up again out of control. When I do get stabilized, thanks to years of coping with CH, I'm still very weak and have to concentrate very hard to do simple tasks.
Now playing the waiting game, blood samples to be returned, all the fluids out of my spinal cord to be tested and the MRI results.
Now here would be the pisser of all time! They're looking at the possibility that I have the West Nile Virus. And could be effected more neurologically because of the existing neurological problems from CH.
Wouldn't that be a bitch, after fighting this Beast for so many years ... and then have a little shit of a mosquito take me out!? Ya know, as much as that would suck, I can't help but kind of get a kick out of it. I mean, come on, it's ridiculous!
I sure hope that's not the case. None of the doctors have a clue yet so I won't speculate too much on that. I am at a point though where I don't care what it is I've got, just want to know, even if I become confined to a wheelchair or even if it's fatal, I just want to know so I have something to go from.
They've got me pumped up to 120 mg's per day of Prednisone, way past the safe limits time wise. Also have me on Amitriplyin and some meds to try to ease the side effects of those meds.
So, I'm kind of skirting around a question here I've been wanting to ask for a while now, but guess I'd better before I possibly can't even work the keyboard anymore.
Hypothetically, if I was to find out that whatever is wrong is fatal (I do feel each day I'm getting closer and closer to that) ... would donating my brain to someone like Dr. Goadsby while still alive be worthwhile? I mean, I still go through multiple CH attacks everyday and night, along with this other new disorder. I wonder if I suffered from two different disorders, would it affect the conclusions of a researcher slicing my brain apart as I would wish for only the study of CH?
Don't get me wrong, I'm not taking the pessimistic route here on what lies ahead, but just in case, while I still have my brain capacity, I wonder about this.
I'm not giving up any fight, I'm not depressed or really even that stessed. I'll admit some frustration and a bit of anger at times, but overall am trying to keep some prespective.
I know many of us would give our brain to research should we know we were going to die anyway. But then again, if we knew we were going to die, would whatever the reason ruin the opportunity to disect and gain useful information about CH from the brain still?
Anyone know anything about this, or who and how to contact someone that could help advise about this type of situation?
Sorry if this sounds morbid, but since there is the possibility, I just feel compelled to ask. If I were to know I was going out anyway, what better "Final Act of Defiance" could I throw back at this Beast that has tormented my head for so many years?
Possibly with a brain examination from a live sufferer who could be there on a table waiting for immediate disection might tell us something and help find the cause or even cure of CH?
I'm not trying to play hero, the idea scares me even, but ... I'd bet there are many out there who would do this in certain cases. Any leads on how I could follow up on this?
I am serious, not looking for pity or anything like that. The doctors are baffled and I'm falling faster and faster away. But I still deep down think I'm going to live and hopefully even recover over time.
This might be a touchy subject, but I think important enough to talk about and prepare for. It may well not be myself, but it could come up again. It seems like something that should be thought about.
I'm open to advice, information, contacts, etc.
Hope this makes sense, I've probably been sitting here trying to type this out for hours, making every effort to sound like I'm all here. Got to get the questions out now in case I can't later.
I'll leave it at this for now, would appreciate any input I can get.
Thanks,
Dave Emond
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Woobie
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Re: Wouldn't this just Pi$$ you off!
« Reply #1 on: Sep 24th, 2003, 2:10am » |
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OMG - I dont know what to say!! WOW!!!!!!!!!!!!
I dont know the answer to your question. I know nothing.
I hope whatever it is, that you can and WILL recover.. please please please keep us posted..
Praying for you!!
tina 
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ave
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Re: Wouldn't this just Pi$$ you off!
« Reply #2 on: Sep 24th, 2003, 2:46am » |
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Dave, your present attitude of, NOT anger, but mild irony and even curiosity could very well save you - if not your life, then your sanity and your soul.
I hope with you that things will turn out better. But it is wise to take thought for what happens if they don't.
Cluster researchers in the Netherlands did, some time ago, request cluster sufferers to donate their brains to our Brain Institute at death.
You could do the same, but you should make sure, if you care, that there is research going on that is meaningful to us clusterheads! Maybe you could check in with cluster doctors from the ouch list to see if anybody is doing this.
I wish you the strength to bear this all and the humour to rise above it. Walk in beauty,
Ave
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Dave_Emond
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Re: Wouldn't this just Pi$$ you off!
« Reply #3 on: Sep 24th, 2003, 2:48am » |
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Don't think I can respond much more tonight, getting hit pretty bad now. Each letter I type is harder and harder to find.
Just thought I better say my wife Annette will keep you up to date should I not be able to.
Can't go on right now
Dave
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Obstacles are those frightful things we see when we take our minds off our goals.
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Hooter
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Re: Wouldn't this just Pi$$ you off!
« Reply #5 on: Sep 24th, 2003, 3:04am » |
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Dave
Add my prayers and vibes into the waves coming at you.
Echo also what Ave says.
Things will get better than this.
A Zen proverb I like when life is really beating me up says "7 times down, 8 times up". When it's bad I think "I am due the 8 times up shortly, just hang in there"
I applaud your unselfish attitude/mission to kill the Beast but I doubt very much that any country's medical ethics would allow any Doctor to experiment on you when you are alive. I also think (this may be wrong) that the main thrust of the examination of Ch sufferers brains is being done whilst an attck is happening and via brain imaging.
Wendy
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ebk3
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Re: Wouldn't this just Pi$$ you off!
« Reply #6 on: Sep 24th, 2003, 3:57am » |
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My only comment is to commend you for suffering like you are and still managing to think of others. When i"m in cycle, no one else has a problem, just me and poor aching head.
Good Luck friend,
Gene
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suzy617
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Re: Wouldn't this just Pi$$ you off!
« Reply #7 on: Sep 24th, 2003, 3:58am » |
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Dave,
Just wishing you strength to fight the beast and that the Drs will soon pinpoint whats going on with you and get you on the proper meds.
Keep us posted. Big vibes coming your way,
Suzy
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OneEyeBlind
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Re: Wouldn't this just Pi$$ you off!
« Reply #8 on: Sep 24th, 2003, 5:14am » |
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Big ass vibes coming your way. Hang in there. Hopefully they will figure out what is wrong soon and they'll get you on the mend !!!!!!!!!!!
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Donna
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Re: Wouldn't this just Pi$$ you off!
« Reply #9 on: Sep 24th, 2003, 7:04am » |
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I'm praying for you as I am sure many others are, Dave.
If there's any comfort in talking about donating your brain, I would think that those who are doing research (perhaps Dr. Goadsby's team) , might have some thoughts as to looking at that old hypothalamus, but definately as part of an autopsy.
We all had a big, serious discussion on this a couple of years ago and talked about doing it....but it never went any further.
People with Lyme Disease have been receiving medical help lately.......not always a death sentence. When I get to work tonight, I'll see what I can find on it and let you know.
Think "hopefull" thoughts, Dave.
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catlind
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Re: Wouldn't this just Pi$$ you off!
« Reply #10 on: Sep 24th, 2003, 7:34am » |
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Dave,
I can't say for sure about the US, but when my grandfather died (Canada) we donated his body to science. Specifically, he had polio as a child and should never have walked, and yet the man played 18 holes of golf on the day of his fatal heart attack. He survived many things medically that he never should have as well. He specifically stated that his body was to be used to further the research for polio and find out why he was able to regain the strength in his leg.
The way we did this was to contact the University of Western (London ONtario) a teaching hospital and set things up. His decision was made long before he passed away so we were able to find out everything ahead of time. When he did pass away, the hospital and funeral director co-ordinated with the teaching hospital to get his body to them ASAP so that they could use his cadaver for research and science.
I do not know if there would be any benefit to you making a decision on a live donation as opposed to researching and getting the wheels in motion so that as soon as you passed your brain would be preserved and kept going long enough for it to serve the purpose you want.
All that being said, I refuse to believe you are going to die anytime in the near future. We all went through the phase of thinking we had brain tumors when we started out with CH, and we are alive and kicking still. I understand your desire to set things in motion just in case, but I for one think that you are strong enough to fight anything that comes your way and you will beat whatever this is and come out on top.
One more thing, request that they do an MRA. MRI's often miss anything that is vascular and if that is what is going on with you (perhaps some form of central nervous system vasculitis) then the MRA will detect it and an MRI won't.
Fight and be strong, you have the family backing you.
Cat
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Miss_Deleny
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Re: Wouldn't this just Pi$$ you off!
« Reply #11 on: Sep 24th, 2003, 7:39am » |
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Sending you PF vibes and hopes that the Docs will soon find out what is going on with you. Keep up your spirits .. positive attitude will help you in the long run.
~April~
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ShariRae
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Re: Wouldn't this just Pi$$ you off!
« Reply #12 on: Sep 24th, 2003, 8:05am » |
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Dave..
wow...you are truly amazing to be thinking of others at a time when you are in such pain. I applaud your courage & your attitude. Heres hopin that all this thinking & planning is just a big ole' waste of time & that you are back to feelin like yourself in no time. Huggs & healing wishes
Shari
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Margi
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Re: Wouldn't this just Pi$$ you off!
« Reply #13 on: Sep 24th, 2003, 8:31am » |
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Dave and Annette,
I'm so sorry to hear that you've got new problems added into the mix here now. My prayers are with you both.
What you're considering is very noble, Dave. You're a brave man. I think the advice Ave gave you is priceless. DO talk to a doctor/researcher that you respect and make sure they are pointed in the right direction.
Please keep us posted, Dave. We're pulling for you out here!!
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andy
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Re: Wouldn't this just Pi$$ you off!
« Reply #14 on: Sep 24th, 2003, 9:30am » |
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Dave, this sucks bigtime. I was hopeing that you were PF and back to work. I dont know what to say to you to make things better other than hang in there bro. You have a lot of people here that care about you. Take one day at a time. Things will get better for you Dave. Your friend and brother in pain, andy
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Re: Wouldn't this just Pi$$ you off!
« Reply #15 on: Sep 24th, 2003, 10:01am » |
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dude....I'm soooooooooo sorry you gotta deal with double trouble, hope you get it remedied soon , keep us up to date I'm pullin fer ya.
PF time for all my men!.....and ladies too!
Ramon
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Dave_Emond
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Re: Wouldn't this just Pi$$ you off!
« Reply #16 on: Sep 24th, 2003, 10:38am » |
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Well,
I'm back, kind of.
Only let myself sleep 2 hours this morning, helped me be ready and cope with waking. Took Annette and a walker almost 45 minutes to get me to the bathroom and then in this chair.
She wasn't too pleased about my suggestion of what I would want to do, which I can see I left things out.
First off, this isn't exactly brave, I wouldn't want to be paralized and in constant CH attacks and whatever this other thing is. That would be horrible. But, I would have them take away the medications and hope they could put me in an MRI with dyes or something and continuosly take images during attacks. Then, if it came down to it, why not try removing the skull cap and examining the brain, maybe stimulating areas, etc., to see reactions. Maybe even a good time to try a surgery that may only be theory now?
Although as I'm trying very hard to write now and still make sense, I'm shaking all over as if to just collapse. Just forcing myself to think and use motor functions is my fighting and coping style. Take away my ability to do anything on my own at all, and it would be a waste to just lie around in pain until the time came and the brain was no longer actually displaying active attacks of Clusters.
I assure you all, I am not a quiter, I am a competitor and almost obbessive at that. No matter what I'm feeling right now, later I should have what I call windows where I can smile and take the pain and even joke at myself for looking like I'm drunk. Also believe that I've been through too much these long years that the only thing that can kill me is myself, and although it crosses my mind, I would never do that. Unless I knew there was no option, and then do it under a controlled situation where every test could be done first and maybe make some type of contribution to taking the Beast down with me and maybe for others.
Appreciate the prayers and vibes, I know you are all out there for us, it is strength were we lack it. I am still on the positive side. Should get MRI results late today, hopefully more blood analysis back and see what they show. The spinal fluids will take a while as will as some of the blood culture tests, so it may be weeks before we have anything conclusive, or today, or never?
Thanks for letting me think out loud,
Dave
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Dave_Emond
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Re: Wouldn't this just Pi$$ you off!
« Reply #17 on: Sep 24th, 2003, 11:55am » |
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Hey all my friends, this is Annette.. Dave's wife.
I am so thankful that you are all out there pulling with us on this. I don't take the time to post very often, but I am one of the numbers who has read many of your posts.
Dave is in pretty rough shape. He can barely walk most of the time, and it is difficult for him to concentrate on telling me or the doc what is going on with his body. He pretty much has to think about doing simple tasks that he would normally be able to do without thought. Like if I hand him something it is a struggle to reach and grasp, let alone hold on long enough to figure out what to do next. When walking (or more like toddling) I can tell that he is having to think about what to do next and with what foot. He works up a sweat within 3 feet and it is at least 25 from his chair to the toilet. He does have short windows of improved coordination, but is still in constant pain. Needless to say my hypertension and blood pressure are on the rise... I am making a point of taking care of myself and getting my rest as far as possible, but the constant worry are definitely taking their toll. Again, I thank you all for your care, concern, prayers and messages. We/I will keep you posted and for sure will post any GOOD news we get along with whatever else we get.
You all take care and hang in there. Annette
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TxBasslady
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Re: Wouldn't this just Pi$$ you off!
« Reply #18 on: Sep 24th, 2003, 12:00pm » |
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Wow.......
Speechless....again. What a kick in the ass.
Promise to keep us informed......
If you or Annette need anything, please advise.
Sending you lotz and lotz of love and pf vibes from Texas, sweetie.
Jean 
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Virginia
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Re: Wouldn't this just Pi$$ you off!
« Reply #19 on: Sep 24th, 2003, 2:03pm » |
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Dave,
I don't have any answers regarding your questions about donating your brain. But please know that my love & prayers go out to you & Annette. The Dr's HAVE to find out what this horrible ailment is. Stay strong & know that we are all thinking of you.
Virginia
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eyes_afire
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Re: Wouldn't this just Pi$$ you off!
« Reply #20 on: Sep 24th, 2003, 5:58pm » |
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Dave, I'm sorry you're suffering so much. I hope they figure out what is happening very soon. Best wishes to you and your family.
--- Steve
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Dave_Emond
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Re: Wouldn't this just Pi$$ you off!
« Reply #21 on: Sep 24th, 2003, 10:55pm » |
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Hello Friends,
Got the MRI results back today, and thank God they found nothing wrong there! Some blood work came back that showed a very high white blood cell count. But, they can't determine if this is because of some type of infection fighting reason or maybe just defense against the high dosage of Prednisone. Tomorrow, we will begin a long taper down off the Pred, as we've gone as high and far as we could. May bring much more of the full pain back, but I agree I can't keep taking so much of it.
My doctor has been great, he admits his limits. He's refering me to a colleague, who he hopes might find something he can't. We'll still have a long wait on the results of the spinal fluid and other blood cultures. It seems they are leaning toward the possibility of MS or West Nile Virus. But, don't want to jump ahead too much, and study me very closely and thouroughly. They are still as baffled as we are and can't guess what lies ahead. There seems to be no connection between the CH and whatever this is, so in a way that's kind of good news. If something were to happen, my brain would probably make a good testing ground. Feel like the scarecrow from OZ anyway.
I've seen "Cool Hand Luke" more times than I could count, and I'm taking that approach to this. With every hit, I'm more determined to get up swinging. Something, somehow, someway good will come out of this in the long run.
Again, I appreciate the support, have to stop for now, made it here on my own to my office, but am too exhausted to continue right now. Maybe in a while I'll be able to concentrate more clearly.
God Bless ya all,
Dave
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Charlie
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Re: Wouldn't this just Pi$$ you off!
« Reply #22 on: Sep 24th, 2003, 11:19pm » |
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Rats kids.
I have some vibes to spare and they're on the way.
I hope whatever this is takes a powder soon.
How about one thing at a time? 
Charlie
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