HOW do you deal with this???

[andrewg]

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.

[TBear]

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.

[Al]

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.

[David]

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

[David]

Al!!

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

Thanks for your help :lol:

[Carol Deboer]

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

[TBear]

Al:

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

T.

[Al]

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.

[Theresa2004]

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.

[danr47]

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.

[me]

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-

[saddaughter]

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.

[Carol Deboer]

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.

[Carol Deboer]

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.

[Carol Deboer]

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.

[Carol Deboer]

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.

[Carol Deboer]

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.

[Carol Deboer]

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.

[Carol Deboer]

Wow, talk about getting your point across eh??? ha..

Sorry guys, hit the submit button about ten times!!!!

cheers.... carol

[Al]

Carol. I thought you were just trying to get back at TBear and I for monopolizing the board.

[me]

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-

[sisterofl]

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

[me]

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.

[Carol Deboer]

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

[me]

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.

[TBear]

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.

[Theresa2004]

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!!!

[me]

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 :lol:

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.
-me-

[Theresa2004]

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.

[Theresa2004]

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!