Old 09-17-2004, 10:16 AM #1 (permalink)
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Default HOW do you deal with this?

My pop has been diagnosed with ALS but they are continuing other tests as that is how they positively diagno, by ruling out others. He has lost mobility in his left hand, arm is limited, right arm is much slower than 4 weeks ago, frequent falls (loss of balance), pain in shoulder... He has gone through several MRIs, a cat scan, electro....gram, !

How do deal with seeing a loved one go from healthy autonomous (he was at the gym every day...), to now needing some assistance with almost all.

Any idea on medication to slow down, trial drgus?. We have apt with Doc next week. I would like to try and be somewhat informed.

What have you done, in home care or a residence? This is very new to my family. We found out this Monday. Doc says 12-18 months...! Is it worth changing his lifestyle (place of residence) for that time. Have you noticed depression in ALS patient, as their mind is still ok?

Any time spent on a reply is much appreciated.
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Old 09-17-2004, 12:07 PM #2 (permalink)
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Hi Andrew:

It's a lot to swallow in a relatively short period of time. You'll receive as much information as you need here. There are many of us who are going through or have already dealt with ALS.

You are correct in that ALS is diagnosed by eliminating everything else, but if your dad has been positively diagnosed by 2 neurologists the next step is to find an ALS clinic close to home. Your neurologist should have an idea on where that is and your dad should make sure that he gets referred there by the time he leaves the office for the next visit.

The clinic will do testing and likely prescribe appropriate drugs. Currently I believe that the only one used specifically for slowing down the spread of symptoms is Riluzol.

As far as help is concerned, if the ALS diagnosis is positive, get onto your dad's family physician and start the process of getting an Occupational Therapist on line and, when needed home care/ attendant care.

My wife passed away from ALS complications over 3 years ago and she stayed at home with us for the entire thing (almost 4 years). Whether you keep him at home or off-site care is something that you will have to decide with him if the work load becomes onerous.

There have been studies done by clinicians on depression associated with ALS, and I can't imagine why people wouldn't have some depression if either suffering from or dealing with ALS. We've all developed strategies individually for dealing with ALS. You'll likely do the same.

Good luck... sorry that your dad has been affected... keep in touch.

T.
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Old 09-17-2004, 01:19 PM #3 (permalink)
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Hi Andrew. First of all there is an ALS Clinic in Ottawa and Kingston if you are closer to that way. Get a referral to the clinic. They will set you up with a Community Care Worker that will come to your home for an assessment of the home and tell you whether it is adaptable to take care of your dad. The Occupational Therapist at the clinic will show you devices that may enhance your dad's quality of life. I am just new to this disease myself so am not up on everything but there is a wealth of information available online.

Last edited by David : 03-07-2006 at 08:10 PM
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Old 09-17-2004, 06:31 PM #4 (permalink)
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Al,

I'm the developer for the site and have noticed that this forum software has gotten a bit "buggy".

Sorry if you are experiencing problems!

I think we're due for an upgrade; soon as I can make sure we won't lose any existing posts

Cheers,

David
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Old 09-17-2004, 06:33 PM #5 (permalink)
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Al!

While posting the above post I ran into the same error you experienced and was able to fix it

Thanks for your help
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Old 09-17-2004, 07:20 PM #6 (permalink)
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Hey Al,

Have a great day tommorrow. Fly like a bird ! Glad to see that you are going for the brass ring ! Let us all know how you make out, or fall down. ha..

Carol
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Old 09-18-2004, 10:57 AM #7 (permalink)
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Al:

May the force be with you... Not just Gravity! (sick physics joke)
it looks like a good day for it!

T.
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Old 09-18-2004, 10:48 PM #8 (permalink)
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Default Skydiving

Took the course paid the money and in the end it was too windy. Students can't jump in over 15 mph winds. Was up to 26 and then down 15 Gusting to 18. So we are off tomorrow morning bright and early to be at the airfield at 9 to try again. Was a tiring day all the same and my left hand wasn't working as well as I would have liked. Cold seems to affect it. Think tomorrow I'll wear a pair of my old summer weight motorcycling gloves. I had some reservations today but am gung ho for tomorrow. I'll keep you posted. Oh and by the way I forgot to tell them I had ALS. It wasn't on the medical Questionaire so I guess it's OK. Take care. Al.
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Old 09-19-2004, 12:43 AM #9 (permalink)
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HI, I will email to your home address. I have been reading these postings and was thinking about you today jumping out of a plane. As I said in my home message, go for it. Too bad it wasn't a good day to do so. I hope tomorrow is better.
I'll email the home and talk later.
Will post to the others soon too for questions and help.
Hi to Carol and Tbear...I am a frequent silent observer for many reasons.
This forum is great, keep it up.
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Old 09-27-2004, 02:50 AM #10 (permalink)
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I think it's important for everyone to understand that it takes an average of 1 billion U.S. dollars to bring a drug to market.

Pharmaceutical companies are not going to waste time studying and testing substances for which they cannot obtain a patent over.

However, people who regularly do research in medical journals will discover that most of the positive research on a long list of terminal diseases actually involve natural substances which cannot be patented.
These are studies conducted by research scientists, most often university studies.

However, pharmaceutical companies do not follow up on them because thay cannot make money off of substances which one can by at a supplement store.

Why is this important? Doctors learn about new drugs when pharmaceutical companies send them free samples and pamphlets. The general public and many doctors like to "poo-poo" natural substances because of a myth that they are never helpful.

People need to understand, though, that the only reason why natural substances do not go through human trials more often is because there is no money to be made off of them. There's actually more interest in natural substances at this point among research scientists at universities than there is in xenobiotics.
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Old 10-19-2004, 02:23 PM #11 (permalink)
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Andrew - I just want to encourage you to stick with this forum for encouragement. There are lots of great people here. This definitely helped me survive when I needed it most. -me-
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Old 11-15-2004, 10:40 AM #12 (permalink)
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Default I'm so sorry to hear about the diagnosis

You posed a question saying "how do you deal with this?" This is really difficult to answer. My dad was diagnosed just over a year ago. I don't think there is a way to deal with this. My heart bleeds for everyone who has been touched by this disease. My father is 56 years old, and was a very strong and confident man. He prided himself on always being a kind and loving man. So I think the first stage I went through was anger. Actually this stage fades but never completely goes away. I've come to realize that there is no point in being angry but sometimes you can't help it. The world is not fair. I've spent a lot of time watching programs on sick children and somehow, this has alleviated some of my anger. My father has lived a good life and at 56 he has done many, many things. Having worked through that stage, I went through the pleading with God. I think I prayed 20 times a day for a six month period. It really consumed me. For six months I was mentally drained. I don't think that there is any benefit in pleading with God. God cannot control this and to feel that you can somehow change this diagnosis is exhausting. Now I'm at the stage of utter sadness. I look at my dad and the state he's in and I accept what's going on. It rips apart my entire being but now I find myself thinking of all of the good things. I actually had a memory of him rocking and singing me to sleep when I was five. I'm finding comfort in remembering things that I might have otherwise never remembered. He's been sharing a lot of his childhood memories with the rest of the family and I feel that we are now starting to know him better than we ever have. This horrible disease is a tragedy at a level that only other survivors can understand. My advice is to not look for a solution for dealing with this - because there really isn't one. My advice is to try your best not to waste too much time on the denial, anger and pleading. Spend as much quality time with your father as you can and never forget that as devastating as this is for you, you can't even begin to imagine how this feels to him. Don't look at everything that he is no longer able to do and feel hurt, look at everyday that he is still with you and be happy. Love with every ounce of love that you have in you and relive all of the good memories together. Grieve afterwards and live today. Be strong.....My heart goes out to you.
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Old 11-15-2004, 02:05 PM #13 (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, 02:06 PM #14 (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, 02:07 PM #15 (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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