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Topic: "End of the Line" (Read 864 times) |
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Dave_Emond
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"End of the Line"
« on: May 23rd, 2006, 11:28pm » |
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Dear Family,
First off, I hope you will all forgive me for my "outburst" on an earlier thread, I'm working hard in my mind on how to deal with that and am praying that I can release that anger and possibly in the future find the ability to forgive. I'm not close to that yet, the hurt is beyond words and it will take some time, but I do apologize for bringing my anger to this family without even explaining the facts behind my unacceptable words. I would like you to know, I do NOT plan on carrying through on things I said, which is tougher than you can imagine for me to do.
So, if you can ignore that vent and those who really know me from the boards since '99 or have met me at conventions, I hope you can know that was not the real me, I had no where to turn and came here as my frustration had me in utter shock and I needed to release a little bit of it somewhere and I can say honestly that post was "a little bit."
Anyway, I titled my post "End of the Line" after a song by the Taveling Wilbury's. This song got me through one of my proudest moments in life ... climbing Mt. Whitney, highest mountain in the continuous U.S.A. (Those that have done it or tried would understand the challenge and determination that feat takes.)
But, I'll get to the crux of this post ... I'm going to die, maybe weeks, months or a maximum of within the next year and a half. Through all the specialist I've seen over the last couple years, I've finally got the confirmation that there is no more they can do for me today at the doctor's office. I'm okay with this, only I hope to still have the time and ability to help some of our family here I volunteered to help and anything else I can still do to help support our family of CHer's and supporters. Also .. the children and parents that deal with CH as well.
ALS and SIS does not effect the mind or intellect, it only destroys the body's ability to function, death in inevitable, but although I may soon lose the ability to write, talk, move and all other basics of life, my mind will be intact. (Right now ... I'm glad there's "spell check" or anything I write now would look like chicken scratch.) May anyway! 
All doctor's agree, only a miracle could save me now. I believe in miracles, myself and the doctors are baffled that I'm still alive now. I can only guess God still has something left for me to do which I wish I had a clue about because with the Chronic CH and the chronic pain that goes along with these other disorders (too many to list now) I'm ready for reaching that "End of the Line." This doesn't mean I'm going to quit fighting. I don't know what's in store for me in the future, but I think I'll know when it's time to take off into the "Boondocks" and pass on there. I WILL NOT if I have control lay out my last days or months in a hospital bed as I watched my father die of the same cruel way ALS has of taking one out.
How long do I think I have? Unless there is an intervention by God, my body is telling me maybe 6 months to a year, although there are many days/nights that I feel it could be hours. Very hard to tell, but I'm ready whether it's tonight, tomorrow or days ... I'm so tired!
I'm now listening to "Even the Losers Get Lucky Some Times" (Tom Petty) so who ever knows?
This is getting to a point where where I can barely write anymore for now (been at this for about 3 hours now) and am feeling foolish trying to find the letters on the keyboard. But, for exercise, I will continue to try to post as long as I still can.
Mainly I'm making this long post to let you all know I love you all and the appreciation I have for everyone who I've come to know here and all your support through good and bad times, is more than I could put into words.
I'm not dead yet and will try to keep in touch as much as I can.
Please ... NO PITY replies ... I'm okay with this and will just hopefully only use this thread to ever talk about it again. Other posts will be I hope helpful and supportive. Any questions ask them here, otherwise on other threads I hope to not dwell on the topic and do what I can while I can.
May be gone next week ... or you may half to put up with me for maybe another year! 
Peace, God Bless and PFDN's to All,
Dave 
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Jimi
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Re: "End of the Line"
« Reply #1 on: May 23rd, 2006, 11:44pm » |
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Goodnight Dave. I am glad that you are not in that place you were at a couple of weeks ago. Glad you posted.
PS. I love that song
I also like Congratulations
and Tweeter and The Monkey Man by them as well.
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sailpappy
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Re: "End of the Line"
« Reply #3 on: May 24th, 2006, 12:13am » |
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 Dave, I'm not only a believer in miracles, I'm a living example, remember in 1998 when my Hep C went Chronic, they said 2 years--5 at the very out side if I didn't get a new Liver??
Here it is almost 9 years later, no new liver, I still have a very high viral load, but still here and in ways I feel better than i have in a very long time. the way you think and allow Stress to take over controls your outcome, at least I believe that!
I have been kicked in the head with about everything possible, haven't lost it yet! You Hang in there bro!! If you need to vent i am always here! Pappy
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Melissa
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You sound like your heart is mending. I know it'll take some time, but at least the path you're on isn't as rocky as it was before.
May you have many special blessings Dave.
love you,
mel
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Dragnlance
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Re: "End of the Line"
« Reply #5 on: May 24th, 2006, 9:18am » |
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Dave,
I believe. I also know that there are times when the feeling of helplessness takes over.
From my own experience, I also believe that fishing is one of God's ways of bringing peace to a troubled soul.
While some people may feel this last comment I make might be out of line, or even cruel, here is my wish for you.
Go fishing, and may you catch a record fish, and while you grasp the fish in your hands, and a smile on your face, may God take you quickly and painlessly.
Lance
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zwibbs/Scott
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Re: "End of the Line"
« Reply #6 on: May 24th, 2006, 11:58am » |
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Don't quit Dave---Miracles happen.
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echo
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Re: "End of the Line"
« Reply #7 on: May 24th, 2006, 12:12pm » |
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miracles do happen.
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Proud Dad of a US Marine, and a former Marine turned Police Officer.
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Dave_Emond
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Re: "End of the Line"
« Reply #8 on: May 24th, 2006, 2:54pm » |
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Dear Family
Quote:| Go fishing and may you catch a record fish, and while you grasp the fish in your hands, and a smile on your face, may God take you quickly and painlessly. Lance |
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Amen! Right now I'm losing the use of my left arm, I can make about 5 casts, then have to wait about 20 minutes before I can do 5 more. It's okay though, I've caught 3 trout in the river I can get to in my Rascal. Can't bring them in yet, I just let off on the tension while they are in the air and they free themselves from the lure. I don't mind, it's being outdoors alone on a bank or shore that I feel best whether I make a catch or not. But if I had my choice Lance, you hit it right on the head!
Jimi and Sean, so cool to me that others know about The Wilburys! Very rare to have so much talent in one group. With Orbison and Harrison now dead, I doubt they'll make another album though. If they did, I would think Clapton, Simon and Frey would fit in well. Sean, thanks for putting up that link to the song, minus a couple words here and there I'd change, the overall inspiration of the songs words and tune always make me feel better and fight harder.
Pappy ... so good to hear from you, we've been close friends for many, many years. I do know your story well and you can trust me when I say I think of you often and you always give me hope.
I often think of you, Carl and myself as brothers in arms. We won't quit and support each other anytime about anything. Good to see you back, you inspire many ... thanks.
Scott, echo, and all of you who believe in miracles, know I do too. I'm not going to ever quit fighting or give up. So far each day physically I get weaker, but although it is very tough through the unending pain, I'll do my part to fight on and leave the rest to God.
Mel, I wish I could honestly say my heart is mending, but I'd be lying. It will take a long time, if ever, for the hurt I feel in my heart to start mending. It'll take more forgiveness than I can muster right now, but I do hope I can find that some day. Hard to see this wound heal. I hope I can find a way to forgive and forget as God does me of my sins and I know I must before I pass on, another reason to hope for time to heal that wound.
I try to do something physical every day, from cleaning, getting out of this dump of a trailer out on my Rascal or even just writing is a physical and mental challenge. (My docs recommend I write to try to keep my motor skills working.) I can look at say the letter "A" and know that's want to hit on the keyboard, but I see it, aim for it, and can miss it by a long-shot. Same as when I try to walk without support, I see the hall, I know where I'm heading, I also see the wall I need to go around ... 3 out of 4 times I'll walk right into the wall. Can be very frustrating, but I guess it's still part of the fight.
I may have some good news, although I've learned not to get my hopes up too high, then be let down. But ... it looks like I may finally get a room in the assisted living home after all! I'd be back in Buena Vista where I belong, they are nice rooms with emergency buttons and very clean. I'm now in a very smaller motor home trailer that has no gas, none of the shutter glass windows work (and they're all about a quarter inch open, letting in the cold and bugs and rain.) Mouse droppings cover the floor beneath the sink, which the whole kitchen is missing many doors to the cabinets. I just covered up the droppings with rugs, had a women die here in this county last month of the Haunta Virus, so I'm not touching that area. No handles on the inside doors and I spend about an hour a day trying to clean the scum out of the bathroom. Well, now that the sink is done, actually I'm working on the tub/shower and can only be down there cleaning for about a half hour ... lol ... then it takes me much longer than that to get back up on my feet!
There are no more meds left for me to take or try, I'll just remain on the Xanax and am starting taking Magnesium supplements, hopefully to keep me moving around and maybe stop these full leg cramps I get everyday that can last for up to 3 hours ... yikes ... those hurt! If I get my 2 hours sleep (if) ... I normally awake to a CH attack, legs cramping up in knots, fall to the floor, many times choking on my own vomit ... and then lay there for hours before I can do anything at all. This is just my mornings, I hate nights worse! I start to come around about 11:00AM then can manage the day as best I can until about 5:00PM, then I start going downhill quickly again. Everywhere hurts and then the barrage of CH attacks begin again. Sometimes I do get what I call "windows" that may last an hour or two, where I can try to a least write but will have to do it crouched over in pain from the separated muscles. Getting to that close to that point now, so enough of this exercise for now.
Thanks for all you're support, I'm writing off line so if I missed anyone please be patient with me and I'll do my best to respond. Thanks for letting me ramble, it helps.
Love you All,
Dave
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Obstacles are those frightful things we see when we take our minds off our goals.
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Melissa
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on May 24th, 2006, 2:54pm, Dave_Emond wrote:| Mel, I wish I could honestly say my heart is mending, but I'd be lying. It will take a long time, if ever, for the hurt I feel in my heart to start mending. It'll take more forgiveness than I can muster right now, but I do hope I can find that some day. Hard to see this wound heal. I hope I can find a way to forgive and forget as God does me of my sins and I know I must before I pass on, another reason to hope for time to heal that wound. |
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 God knows we are fallible because we are human. Nothing on this earth is perfect, except for the Divine love for each of us. Even if you do not forgive, God will still love you.
Do whatever your intuition tells you is right Dave. That includes any fear or sad feelings, as well as good ones. Basically, follow the signs and listen to what they're trying to tell you.
Anyway, it's how I live my life. That guiding hand has not steered me wrong yet.
Hugs,
mel
BTW, have you tried Folic Acid for the leg cramping? I used to wake up every night with cramping all over, even in my ears, and since I've been on it, I don't have the problem anymore (unless I miss a dose).
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maffumatt
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Walk with God Dave.
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Dave_Emond
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Re: "End of the Line"
« Reply #11 on: May 24th, 2006, 6:36pm » |
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Thanks Mel & Matt,
Relieved you understand at least somewhat that we are indeed human and as much as we'd like will never measure up to the abilities God has that we don't. Not ready by a long-shot right now to try, though somehow ... someday ... I know I'll have to try at least.
You're both right, "Walk with God" and "follow the signs" are all I have left, stray from that route and why would I even try to fight? Thanks for your thoughts.
Tried to take my "scooter" out for a ride, but too sore to make it more than a couple hundred yards, so I'll write this short note for some more "excercise" then go sit outside.
Think I'm more worn today as yesterday was pretty scary. My Mother and Uncle were in a car crash that totaled my Uncle's car and a camper trailer they hit. One half second difference in timing and I would have lost them both. I'm not supposed to drive on any main roads, I get around on back dirt roads if I must drive, but I drove around looking for them at the hospital, their homes and anywhere I could guess they might be. Finally found them, fortunately neither were hurt badly and so far have not had to go to the hospital.
Afterward, we had a chuckle that thank God thier gaurdian angel wasn't that guy from the TV commercials!
Well, tired and can't stand being in this trailer so will cut short and turn up my music and go sit outside for awhile before the rain hits.
Thanks,
Dave
(Hey Jimi: Just as I'm finishing this up, "Congratulations" came on a cassette tape I made years ago!)
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Obstacles are those frightful things we see when we take our minds off our goals.
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john_d
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on May 24th, 2006, 6:36pm, Dave_Emond wrote: turn up my music and go sit outside for awhile before the rain hits.
Thanks,
Dave |
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sounds nice, enjoy
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Jonny
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Re: "End of the Line"
« Reply #13 on: May 24th, 2006, 9:52pm » |
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Dave,
I wish you luck, I have met you more than once and hope your situation turns for the better!
It would be nice to hear from Annette though.
Good luck dude!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Charlie
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Re: "End of the Line"
« Reply #14 on: May 24th, 2006, 11:48pm » |
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Good to hear from you Dave and that you are getting around one way or another. It's true that moving is the best thing for you.
I can't get over that you have to deal with CH as well. You're a better man than I. I think I'd have a hard time forgiving for having to deal with this horror on top of another.
Stick with us and keep up the posts It's good for you as well as us.
Charlie 
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Carl_D
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Been wondering when you'd be plugged back into the matrix and posting. Glad to hear your in better spirits at least, and I hope the room opens up for you soon at the residental care facility.
I am currently unplugged from the matrix at home (not sure if it is a fried modem or what). I am getting a different machine in a couple of weeks anyway but not sweating it. Too much work to do anyway so I won't miss the internet for now. I am checking messages from work, but will be off until next Wednesday (unless I get called in Tuesday).
You need to talk or anything, you got my number bro.
Peace,
Carl D
PS - Pappy - good to see you alive and kickin' and beatin' the odds! Hope things are well with you.
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floridian
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The magnesium is a good idea, and you might think about tomato juice - the lycopene may be beneficial. N-acetylcysteine is also worth considering.
Quote:Neuroepidemiology. 2000 Jul-Aug;19(4):210-6.
Dietary intake of calcium, magnesium and antioxidants in relation to risk of amyotrophic lateral sclerosis.
Longnecker MP, Kamel F, Umbach DM, Munsat TL, Shefner JM, Lansdell LW, Sandler DP.
Epidemiology Branch, National Institute of Environmental Health Sciences, Research Triangle, NC 27709, USA. longnecker@niehs.nih.gov
Dietary factors have long been suspected of being risk factors for amyotrophic lateral sclerosis (ALS), but few human studies have been reported. To address several of the dietary hypotheses, a case-control study of risk factors for ALS conducted in New England in 1993-1996 included an abbreviated food frequency questionnaire. We examined the dietary intake of calcium, magnesium and antioxidants among 107 ALS cases and 262 community controls. Overall, these dietary factors were not related to risk of ALS, though modestly protective associations were suggested for magnesium and lycopene.
PMID: 10859501 [PubMed - indexed for MEDLINE]
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Quote:Neuroreport. 2000 Aug 3;11(11):2491-3.
N-acetyl-L-cysteine improves survival and preserves motor performance in an animal model of familial amyotrophic lateral sclerosis.
Andreassen OA, Dedeoglu A, Klivenyi P, Beal MF, Bush AI. Neurology Service, Massachusetts General Hospital and Harvard Medical School, Boston, USA.
Increasing evidence implicates oxidative damage as a major mechanism in the pathogenesis of amyotrophic lateral sclerosis (ALS). We examined the effect of preventative treatment with N-acetyl-L-cysteine (NAC), an agent that reduces free radical damage, in transgenic mice with a superoxide dismutase (SODI) mutation (G93A), used as an animal model of familial ALS. NAC was administered at 1% concentration in the drinking water from 4-5 weeks of age. The treatment caused a significantly prolonged survival and delayed onset of motor impairment in G93A mice treated with NAC compared to control mice. These results provide further evidence for the involvement of free radical damage in the G93A mice, and support the possibility that NAC, an over-the-counter antioxidant, could be explored in clinical trials for ALS. |
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Kirk
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Re: "End of the Line"
« Reply #17 on: May 27th, 2006, 8:24am » |
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Long time no see Dave. Happy trails till next time. Here or there.
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Leesa
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Re: "End of the Line"
« Reply #18 on: May 28th, 2006, 12:22am » |
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Hey, I havent been round much as you know Im sure, but I have tryed to call you several time dear just to shoot the shit with ya like we used to. So if you could use a laugh or just someone to yell at shoot me your number and we can shoot the shit. BTW I do believe in miracles, they happen every day babe!
Leesa
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catlind
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Re: "End of the Line"
« Reply #19 on: May 28th, 2006, 1:43am » |
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One of these times I'm sure you'll answer your phone too
Cat
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Dave_Emond
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Re: "End of the Line"
« Reply #20 on: May 28th, 2006, 1:47am » |
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Cat,
Check your IM
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Obstacles are those frightful things we see when we take our minds off our goals.
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Daddys_Devil
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Good luck Dave. You'll be better off than the rest of us. Keep your chin up and fight like hell!
Always,
Felicia
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superhawk2300
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Re: "End of the Line"
« Reply #22 on: May 29th, 2006, 11:21am » |
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I am new here and do not know you but your posts moved me - I appreciate your sharing this time with me - it gives me new perspective on my life.
Thank you very much.
And I beleive in miracles too.
Jamey
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Dave_Emond
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Re: "End of the Line"
« Reply #23 on: May 29th, 2006, 9:55pm » |
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on May 29th, 2006, 11:21am, superhawk2300 wrote:I am new here and do not know you but your posts moved me - I appreciate your sharing this time with me - it gives me new perspective on my life.
Thank you very much.
And I beleive in miracles too.
Jamey |
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Wow ... thanks Jamey,
And thanks as well to all of you who have responded, I wish I could respond back to each post individually. Had no idea that anything I've said could be considered inspirational, actually am somewhat embarrassed that I've been so weak as far as giving into the stresses in my life lately and posting them here. Fact is, yes the pain is there, some serious hurt and physical things that are beyond my control. But, I haven't slept for a few days now and this has given me time to think. My mission now is to quit dwelling on the negatives and look for the positives and use those positives to fight like I used to and return to that person that many of our family here knew and also return to supporting new members to our family. Thank you all so much for your support during my "meltdown" in return I'll try to do my best no matter the odds to put excuses and past behind me and move on to the person you knew or are just meeting.
(oops ... I just did a "preview" and lost all the responses I got since my last post)
But, even if I can't now respond to each reply, know I do appreciate each one.
Jamey ... this is what this "family" is all about, they have not given up on me when I was down, you can trust they will always understand and be there for you as well no matter what. Just your mentioning that I somehow inspired you has turned around and inspired me all the more, so it is I who should be thanking you.
And again, thanks to all of you ... I'm working my way back with your support!
Love ya All,
Dave
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Obstacles are those frightful things we see when we take our minds off our goals.
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floridian
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Vitamin E, cod liver oil or flax oil ...
Quote: J Neurol Neurosurg Psychiatry. 2006 Apr 28; [Epub ahead of print]
Intake of Polyunsaturated fatty acids and vitamin E reduce the risk of developing ALS.
Veldink JH, Kalmijn S, Groeneveld GJ, Wunderink W, Koster A, de Vries JH, van der Luyt J, Wokke JH, van den Berg LH.
University Medical Center Utrecht, Netherlands.
BACKGROUND: To assess whether the premorbid dietary intake of fatty acids, cholesterol, glutamate, or anti- oxidants was associated with the risk of developing ALS. METHODS: Patients referred to our clinic during the one-year period, 2001-2002, who had definite, probable or possible ALS according to El Escorial criteria, without a familial history of ALS, were asked to participate in a case-control study (132 patients and 220 healthy controls). A food-frequency questionnaire was used to assess dietary intake concerning the nutrients of interest. Multivariate logistic regression analysis was performed with adjustment for confounding factors (sex, age, level of education, energy intake, body mass index, and smoking). RESULTS: High intake of polyunsaturated fatty acid (PUFA) and vitamin E was significantly associated with a reduced risk of developing ALS (PUFA: OR = 0.4, 95% CI = 0.2 - 0.7, p = 0.001; vitamin E: OR = 0.4, 95% CI = 0.2 - 0.7, p = 0.001). PUFA and vitamin E appeared to act synergistically, because in a combined analysis the trend OR for vitamin E was further reduced from 0.67 to 0.37 (p = 0.02), and for PUFA from 0.60 to 0.26 (p = 0.005), with a significant interaction term (p = 0.03). The intake of flavonols, lycopene, vitamin C, vitamin B2, glutamate, calcium, or phytoestrogens was not associated with ALS. CONCLUSION: A high intake of PUFAs and vitamin E was associated with a 50% to 60% decreased risk of developing ALS, and these nutrients appear to act synergistically. |
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