Old 11-15-2004, 02:07 PM #16 (permalink)
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Hi There,

My sentiments exactly.... I tell people that cannot deal with Henrys ailment that he is a man with a disease, not a diseased man. Live for the moment, because really, thats all we have. God Bless.

Carol D.
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Old 11-15-2004, 02:08 PM #17 (permalink)
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Hi There,

My sentiments exactly.... I tell people that cannot deal with Henrys ailment that he is a man with a disease, not a diseased man. Live for the moment, because really, thats all we have. God Bless.

Carol D.
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Old 11-15-2004, 02:08 PM #18 (permalink)
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Hi There,

My sentiments exactly.... I tell people that cannot deal with Henrys ailment that he is a man with a disease, not a diseased man. Live for the moment, because really, thats all we have. God Bless.

Carol D.
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Old 11-15-2004, 02:14 PM #19 (permalink)
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Wow, talk about getting your point across eh? ha..

Sorry guys, hit the submit button about ten times!

cheers.... carol
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Old 11-15-2004, 02:30 PM #20 (permalink)
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Carol. I thought you were just trying to get back at TBear and I for monopolizing the board.
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Old 11-15-2004, 08:21 PM #21 (permalink)
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Carol & Giselle - I thought of you today while watching Operah....They had the Brazilian Giselle interviewed. She seemed like a sweet girl, and of course beautiful. Just like you!

Nathan is talking about more weakness in his hands and arms. He was having trouble signing papers this evening. He said it was the forearm on both arms. Hmm.....

I bought some good vitamins from GNC (Mega Man for my mega man ). It has lots of B vitamin, E, along with other amino acids and fruit/vegi stuff. I've also been reading about magnesium deficicencies which can cause similar symptoms and actually cause neurological damage.

I have been really cooking up a storm, trying to get us both to eat more healthy foods.

I just wish I knew what was going on. Fisher, how did manage for so long before being diagnosed. The not knowing sometimes seems worse than anything. Well, I gotta run for now.

-me-
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Old 11-15-2004, 09:32 PM #22 (permalink)
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Hi Andrew,

I was exactly where you are a year and half ago with my brother. I went through all the stages, anger, denial, bargaining, and finally acceptance...I think that we never really stay in one stage and fluctuate depending on the moment. I try to stay away from anger. It does not accomplish anything.

I look at the positive side (if there is one...) My brother is only 47 but has touched so many lives as a high school teacher. I admire his courage and I'm there for him. It's not easy, because he can be really stubborn. In his case the hardest part is the loss of "speech". You are trapped in your body. He can barely work the mouse to activate the keyboard by which he communicates, yet he continues to work on a website for the school he used to teach at.

He's had a chance to travel all over the world and meet some really neat people.

Reading everything I could about ALS has helped me. I have also read the following books in the past month:

"Tuesday with Morrie" by Mitch Albom (made me angry because Morrie could still speak)
"The Five People You Meet in Heaven" by Mitch Albom
"Learning to Fall" by Philip Simmons
"Final Gifts" by Maggie Callanan and Patricia Kelley
"How to Say it When You Don't Know What to Say." by Robbie Miller Kaplan is next on my list. I'm piciking it up at Chapter tomorrow.

I think this forum is really helpful. I'm sorry you and your family have to go through this.

My prayers are with you.

Gisele
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Old 11-16-2004, 08:28 AM #23 (permalink)
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After re-reading my post I guess I didn't really get the message Carol tried so intently to get across! Live for the moment, because really, thats all we have. After reading it 10 times I guess I should have! Thanks Carol for all your encouragement.

Thanks Giselle and "saddaughter" for sharing your emotions too, it does help.
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Old 11-16-2004, 08:30 AM #24 (permalink)
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Hi Melissa,

How are you sweetie? I wish I could make things all better for you. Have you thought about taking Nathan to London to see Dr, Mike Strong? You are so close to us that it might be an answer to your situation. Just a thought, if you need help doing this, I will help you. The als clinic and team in London are one of the best in the world. Let me know. His problems have been ongoing for so long now, you need resolve to this. You are too young to have this cloud hanging over you for too much longer. I will even go with you if need be. Stay Strong.

Love ya, Hang in there.

Love Carol
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Old 11-16-2004, 02:21 PM #25 (permalink)
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Thanks Carol - I will keep your offer in mind. At this point he is resistant to checking anything else out. He says, "if I'm sick, I'm sick...." We are so different in how we handle things. He really wants to, and seems able to, ignore things. For me, I like to seek out all the answers, try all the possibilities and at least know I've tried everything. We really drive each other crazy sometimes with that. I suppose when things get bad enough he'll be ready to go to another doctor. I really want him to get the EMG (the muscle test).

I always do better at ignoring it when he's fine. But, he's been feeling so badly again the last few weeks. How do the rest of you not let your emotions swing with how they are feeling? I always used to be such an independent person, but now, when he's sleeping all day (for example) I just feel so sad, lonely, scared, unable to motivate myself to do anything. I am trying to get myself over the hump.....

Well, sorry I'm not bringing much humor these days. I'll come around. I thank you all for everything.
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Old 11-16-2004, 06:51 PM #26 (permalink)
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Hi Melissa:

I must have missed something awhile back. Has Nathan? been positively diagnosed with ALS? ...or is there some resistance to finding out?

T.
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Old 11-16-2004, 10:06 PM #27 (permalink)
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Hi Melissa. I am a bit lost like Tbear, has he been diagnosed with ALS?
Your emotions should be all over the place, the man you love is ill.
I had a nice message to return to you, but I lost it somehow.
I am tell me the truth upfront person, then I will deal with. The unknown drives me crazy, and if I had pushed my friend harder, I would not be wondering at this moment what the hell is going on with him.
Try going to the doctors he has seen on your own, and push them. Ask them what they think, and how best to persuit further tests.
Tell your husband you love him and will support him no matter what, but he has to find out what is wrong. I have a brother in law who ages and ages ago was ill, the doctors couldn't find out what the problem was. My mother had him diagnosed from day one with a brain tumour. Finally after much aggressive interaction, two years later, he had his surgery and is fine now.
You have to be strong, and insistent with him. I made the mistake of soft questions, now I am paying the price.
Carol, you are amazing with all you have on your plate to offer to help her.
WOW!
Now, go do what you have to do, talk to the doctors and don't let up, then kick him in the ass. Ask Carol for some help in that area, she seems to have a stubbourn husband.
Just make sure he knows you love him, make him listen!
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Old 11-17-2004, 07:09 PM #28 (permalink)
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Theresa - thank you so much for your words. I am glad I'm not the only one with the need to know. I have always been that way, just like you said, tell me what the problem is, I'll learn about it and deal with it. Not to say that it would be easy, but at least I'd know what I needed to deal with. I will see about visiting a doctor myself. You are the 2nd person to suggest it. I guess I figured they wouldn't talk to me since I'm not the patient.

Carol - she is the most amazing woman, isn't she. I hope to be like her when I grow up

Okay, let me give a brief synopsis of what's up here.....June 2003 he started having tremors. He is a welder and began talking to his mom (a nurse) about the symptoms and possibilities. In January, he broached the subject with me (yes, I noticed things but he denied anything was going on). They felt at that time it may be manganese poisoning due to the poorly exhausted building he was working in. Manganese poisoning leads to Parkinson like syndrome. In Feb. we finally got to a general neurolgist who ordered some tests for him (blood, EEG, MRI and urine and nuero-psychological test). Everything came back normal. The 2nd time we saw him he offered him some anxiety medication and said to come back in 6 weeks. He did not take the medication due to having just completed a CDL course and not wanting to jeopardize his license. Also, it can be very addicting with nasty side affects which we didn't need since we didn't think that was the problem.

6 weeks later we returned and told the doctor the symptoms had worsened. He seemed surprised and agreed (with a raised eyebrow) to refer him to a movement disorder specialist. That guy did a quick office check and stated he was fine and suggested he see a Psychologist. Well, he had numerous stressors going on (including a lost job) so it seemed plausible stress could be a factor, and even if not it probably wouldn't hurt anything.

He started seeing the pschologist in June 2004 and has been seeing him since. He also got a good job that pays decent and he likes. Most of the stressors have been taken care of. Yet, his symptoms have not gone away, I'm not sure if they have gotten worse or not because he doesn't talk much about it. yesterday he dropped a bottle and said under his breath "I keep dropping things lately". Then, he doesn't want to talk about it, end of discussion. When it has come up briefly in the last few weeks, he shrugs his shoulders and says something to the effect of "whatever happens will happen."

I guess I can understand how he feels because the first doctor was fairly patrinizing and seemed to be saying it was all in his head. Young people don't really have these disorders so it must be stress. Let's medicate you and you'll be fine. However, I would be one to keep looking until I found someone that took me seriously. The thing is, I see these symptoms and know they are real at some level.

One thing I have been reading about is deficiencies in magnesium, vitamin B and vitamin E. All those sound like they have similar symptoms and I'd like for him to have those levels checked out. I'd like to have the EMG and any other tests that might tell something so at least if it was "all in our heads" then we'd know. For several months I was able to tell myself it was nothing......I just don't feel convinced of that. I wish he wanted to know too.

Well, so much for my "brief" story. That pretty much covers it up to now.
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Old 11-18-2004, 12:54 PM #29 (permalink)
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Man, this site is slow today..forever to load.
When faced with adversity, it is impossible to deal with without the facts, and hiding isn't going to cut it.
As Fisher said to me, and as I expect all the other patients and caregivers can attest to, this is a rollercoaster ride, and without support from loved ones, it is impossible to endure.
I am battling getting the information I want, feel as if I am in a email war. Part of me wants to say bug off then, the other part is trying to be patient. But this is wearing on my nerves and my own health.
Your story sounds crazy. Go see the doctor, he may not tell you a thing, but he may be able to redirect you. Be firm and tell him this diagnosis is not acceptable, or lack there of, and perhaps start from scratch. Take Carol up on her suggestion to get into London hospital.
Men can be very stubbourn...sure that will create a great debate amongst the males in the group.
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Old 11-18-2004, 02:38 PM #30 (permalink)
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Carol, some where along the way I read your previous message about the difficulty from diagnosis, depression, and all you battled. I wouldn't begin to pretend what the immediate families are facing, but thank goodness you are a strong group of people.
Everyone does handle this differently, but it is so frustrating when you want to help, and they won't let you. The last few days I have been waivering between saying adious, or rapid fire emails to make my point. Doesn't seem to matter what I say, he won't talk.
Thanks for all your kind words in that message, I know the text is somewhere here, but the site seems sluggish today, and I am trying to post from work.
Melissa, don't give up trying, at least he is in front of you, it does give you a wee bit of an advantage.

Man, there are so many postings here , I am gettting lost in the jungle!
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