Old 09-20-2004, 11:15 PM #16 (permalink)
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Hi Theresa:
Yes my wife had ALS for 4 years and passed away 3 years ago. The whole IV thing and any groin area implications area foreign to me. I'm sure your friend will reach out to you when he's ready and will remove all the guess work and speculation... in the meantime, it's Monday Night Football!
Good Luck

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Old 09-20-2004, 11:52 PM #17 (permalink)
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Default IV's and other things.

Hi Theresa. and all the rest. The IV in the groin could be for an angiogram to check for clogged arteries. That may account for some of his tiredness. The medication problems could be heart related as well because some of the blood pressure and heart meds will give some males some trouble in the flag department. Barring that they did try an IGG Transfusion on me at one time. It stands for Intervenous Gamma Globulin. They hooked me up to an IV for 8 hours on 2 separate days to pump me full of antibodies. This was when one of the Neurologists thought I might have Multi Focal Motor Neuropathy. Another motor neuron disease but not as bad as ALS from what I have read. They used my hand but I suppose it is possible to use the vein in the leg. Hope this gives you food for thought and maybe a need for a coffee. Hope all is well with everyone and I can move my legs tonight. Boy was I sore this morning. Still do it again though. Regards.
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Old 09-20-2004, 11:55 PM #18 (permalink)
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Default Hi Carol

First time someone has been on and it showed who when I was here.
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Old 09-20-2004, 11:56 PM #19 (permalink)
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Hi Al,

Or should I say HIGH ! Good for you. Sounds like you had a terrific time. It takes a lot of nerve to skydive, or so I have been told. I do not have that type of nerve. Flying does not bother me, but I prefer to be in a plane. As T said, you are a hero. You have stared adversity in the face and said I'm going for it. Wonderful..... You will have that memory forever. My hats off to you.! On a more serious note, what the heck is happening to our NHL? I cannot stand to think that we will have to go all winter with no hockey. That sucks. Well, if push comes to shove, we will all come down to your place Al every Sat. night, and watch you jump out of a plane. wow... just think, you will make the record books or something! Loved the photos. It is nice to place the name with a face. You are a handsome devil aren"t you? What did Lee think of your jump? She must have been on pins and needles. Anyway, Congratulations, you truly are admired by us. Love to all.....

Stay Strong..... Carol D.
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Old 09-21-2004, 12:11 AM #20 (permalink)
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Lee says it made her happy to see me do something that I had wanted and she hopes we get to do more of the things on my wish list. And by the way Terry is the handsome guy on the right. I'm the other guy on the left.
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Old 09-21-2004, 11:24 AM #21 (permalink)
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Hi Theresa,

My dad hasn't had any IV's, so I can't help you there. In fact after the 2 neurologists confirmed his diagnosis and they prescribed Riluzol, they didn't even schedule a follow up. Doesn't seem like they plan on doing much for him. He started seeing a naturopath and seems to feel pretty good after his visits - whether its psychological or physical I'm not sure, but if he is feeling good and his spirits are up that's good enough for me for right now.

Al, I don't think he'll be jumping out of a plane any time soon though. You are truly amazing! I'm 41 and healthy (I think) and you wouldn't catch me anywhere near the open door of a plane! Congratulations and CHEERS to you.

Have a great day everyone,
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Old 09-21-2004, 07:08 PM #22 (permalink)
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Hey Bear # 2 !

Seeing a naturapathic doc is good, but...... be careful. We spent thousands of $$$$$$$ and the outcome, still the same. However, if you think something will help, then by all means go for it. I think, that a lot of these people give false hope to us. I know they do. If they actually had something that helped ALS, they would be very famous, and there would be no more suffering for all of us. Is this the case, no, not yet. That is what ticks me off more than anything, people trying to get rich off of the helpless, vulnerable , and that is us, the people that are affected with ALS. Be very careful, and remember some of the things that help us the most are the most common things we have around the house. We still juice, each and every day, and I know that this is the one sound thing that has kept Henry here for this long. Regular vitamins, rest, proper diet, and lots of love and patience and understanding are the best meds that I know of. Do they cost an arm and leg? No. You will need the $$$ later on in this journey believe me. Anyway, best of luck. Stay Strong. Al, You are a handsome devil! The other guy has nothing on you! Nice to see that you have a list of things that you want to do. Goforit....

Gotta fly, (no pun intended !) Got to feed Henry. Smiles and Hugs to all,

Carol xoxo
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Old 09-23-2004, 07:35 PM #23 (permalink)
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Hi:
We went to a naturopath early on as well. Had the interview and were told outright that, yes, she could and had cured this before... We bought about $200.00 worth of unexplainable product ( I think bat wings and eye of newt were involved though) and my wife was given some immediately. The "cleansing of toxins" wiped her out for days... and we never went back.
I think a good rule of thumb is that if it's prescribed and they can't or won't tell you what is in it and what it's supposed to do you probably don't want to stick it in your mouth.
I think that Carol is right on with the love, patience and understanding (it's what us caregivers can give real cheap!) but I can also understand the drive to do whatever it takes to lengthen the ride.
Al... I must have missed the pictures... but it's okay as long as I don't miss Carol's bikini... Has anybody heard from Fisher lately? With weather like this he might be permanently posted on his deck with a bottle of wine! At least I hope that's the case.
CHeers!

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Old 09-23-2004, 11:50 PM #24 (permalink)
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Hey TBear,

Yeah, Henry did all of the detoxifying, chelation and herbs and whatever else they had to offer. It was both a costly and tiring adventure. But, as you said, you have to try it all.

FISHER, CALLING FISHER, I KNOW YOU ARE READING THESE POSTS, HOW ARE YOU? It has been so nice out lately that maybe you have not gone into the house to see what is on the computer! Let us know how you are.Okay? I am tired, and I am going to bed now. It has been a loooooong day, if ya know what I mean. Nighty night all......

Love, Carol
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Old 09-24-2004, 01:03 PM #25 (permalink)
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Sorry Tbear. Didn't have your email address but had Carol's so I sent her some pictures. Got a heck of a cold now. Wouldn't you know it summer fianlly arrives and I don't feel like going out. Have a good weekend all.
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Old 09-24-2004, 08:54 PM #26 (permalink)
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Hello everyone, Good to see more posts here. Hope it continues.
Will be walking to morrow in the Hamilton Walk to D'Feet, wondered if anyone else from the board was walking. Sounds like it is going to be a perfect weather day for a walk. Taking Sis in w/c along with her daughter, 2 yr. old grandson and a friend. It is going tobe a fabulous day Hope you all have a good weekend. Jane.


P.S. Went to Sunnybrook and Sis is getting a Dynamite voice device!
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Old 09-24-2004, 08:57 PM #27 (permalink)
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Ok, Al, I feel cheated. Where are my pictures you sent to the rest of them? Hum.....sorry you are feeling crappy, when you are back up and jumping out of a plane again, we will arrange for that coffee.
Things have been rather hectic around here, which is an understatement. I can explain it all over coffee, or maybe a glass of wine.
I am waiting to get some more information, like pulling teeth, but my friends meds have been changed, I don't know what to yet, and has made him quite ill.
Thanks to all for the IV tips, who knows what this is. His heart is good and strong, baffles me.
Guess it is time for that chat, if only he could feel better to have it.
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Old 09-25-2004, 12:54 AM #28 (permalink)
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Just a quick observation. Wine seems to get a lot of mention in the postings. Maybe we should become a wine tasting club instead. A lot more fun and at least it takes your mind off the unpleasantness for a while. We could do beer tastings on alternate weeks for those that are of that persuasion. Hopped up on antibiotics. Must be what made me come up with this brilliant idea. Hope no one is offended. I have been told I have a strange sense of humour.
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Old 09-25-2004, 08:31 AM #29 (permalink)
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Well, someone started the beer and wine suggestions. White please, but it appears to be a red wine and beer group.
Great idea. I am still looking for the picture Al, now get moving.
I have to go to work. UG..Saturdays....
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Old 09-25-2004, 03:47 PM #30 (permalink)
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... that's an excellent suggestion Al... strangely enough wine and beer is what I do best! Hope you're feeling better... I'll send my email address when Carol posts her pictures!
The dog and I just got back from the cottage. The fall colours are well on their way and the water is still swimmable!
Cheers!
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