Hey Guys.

Just checking in with you guys to see how things are going. Life here is getting more difficult by the day. It seems to be moving very quickly now. The first 6 years were difficult, but this past few months have been of rapid pace. His speeck is so weak and low now, and I know when we go to the doc next month that his lung capacity will be down again. His eating is getting so slow now as well. It takes a long time to eat even a sandwich. We exercise the upmost of patience with him and he is such a sweetie. He always thanks us for every task we do for him. It makes it so much easier to take care of someone who loves you so much , and that you love so much. There is no anger anymore, just appreciation of each day here. I hope that you Johnny and Fisher are doing the best you can with this rotten ailment. It is so hard for everyone, family, friends, and even just people you come in contact with on the street. Adversity at this level is not common to most people. Oh well, we get up, we face another day. Take with it what comes. God helps us in so many ways. Let us know how things are guys. We miss you. Lots of Love, and Stay Strong.

Carol D. xoxo

Hello Carol.

I'm so sorry to hear Henry is losing ground. Sis is also losing her voice, speech is becoming slurred. It is very difficult for everyone, especially our Mom.
You have been such an inspiring person, giving advice and solace to all via this site, I hope you feel the strength and prayers going out to you and your family.
I wish you continued strength in the struggle you face.
Jane

Hi Jane,

Hi everyone!! Hope everyone is doing fine. It was a rainy weekend here in Sarnia. Of course, I worked all weekend so I did not see much of it anyway. Daffodils, tulips and some other of my flowers are in bloom, and they look so beautiful. I love this time of year. It is like new start, new life. I love to see the buds on the trees, and them watch as they unfold day after day. It is such a poweful force, nature. I hope that we have a nice summer this year, warm and sunny, not too much rain. Man, is that asking for perfect or what? ha.... Oh well, it doesn't hurt to ask the weather man does it. lol The hardest part of this als thing, will be when Henry cannot talk to us anymore. That will be so hard. Then, all of your freedom is gone. I know we have the dynvox, laptop computer, and everything that he would possibley need to communicate with, but,..... It is just something that we all dread. Things here are pretty much the same, party, party, party, ha! Ha! Don't you wish you were a kid again, and that is all you had to worry about. The weekend, and your friends. Oh to turn back the clock. Anyway, just a short note, Jane, tell your sister to hang in there, she has our support and love, and most of all prayers. And to Johnny, and to Fisher, where are you guys? Don't you miss us at all? ha.... Hope to hear from you all soon. Keep the Faith, and never stop praying for a cure. Love to all...

Carol D.

I've been reading through all the posts here today and wanted to respond. My husband is in his 20's and has been having many of the symptoms discussed for just under a year. We've only just begun down the road of testing etc. and are now seeing a neurologist. It seems discouraging to read how long it takes to get diagnosed. All that time that goes by with no treatment. Well, I'm typing from work so I should close now but I needed to get my 2 cents in! It looks like you are all a great group with much experience.

:) Hi Me,

Glad that you found us. It is a elite group here!! We come from all over Canada, and have found this forum to be a comfort to all that suffer from this als thing. It is a group no one wants to join, however, once you do, you find the nicest people and the comfort that so many of us need, and somehow do not get from others that don't understand the adversity of this als ailment. Your hubby is soooo young....only in his 20's. wow.... I hope that your final dx is not ALS. Where abouts in Michigan are you? We border town with Port Huron Mich. We go shopping there quite often, and used to go to dinner over there alot. There are some really good clinics over there. Henry went to the MD clinic in Farmington Hills. They were awesome!!!! They were really hoping Henry did not have als either. But after a spinal tap, emg, blood work, MRI, and a series of reflex tests the dx was the same as the one we got here in Ontario, from Dr. Strong and the University Hosp. You have to do what you have to do. However, I still do not understand why it takes so long in some places. I know it is not something that you come to first conclusion. Tests must be made properly and to rule out other ailments that mimic als. Good luck to you. It is something that will change your lives forever. You will be strong, and you will be overwhelmed, but you will overcome. Get your final diagnosis before you go any further. Good luck, and our thoughts and prayers are with you and your family. Stay in touch. Many people find us , and then we never hear from them again.
Saty Strong....

Carol D.

yuk :cry: be back soon (i hope)

Hi Fisher:
Hang in there... John and I are counting on you for pictures of Carol's little red string bikini this summer... Hopefully it will pass the censors.

Carol:
I think you'll find, as Henry's communication becomes more difficult, that you'll develop all sorts of techniques that work... buit the best is the wink and nod!
CHeers

Hello
Names Moe, from U.S.A, have been here last year. Now I'm here again. Husband has als for 3 1/2 years. speech is almost gone receiving communication device in Nov. swallowing difficulties, but wants nothing to do with feeding tube. Hes in a wheelchair, I pretty much do everything forhim. Some difficulties breathing, but doesn't want to use BiPap. We have 4 children at home all boys 16,15,12, 5. I love them all so much, if I didn't have them I don't know I could do this, they keep me fighting. I noticed on one of your replys who said you were not getting much support for yourself on this forum. i was on about a year ago and I seee you keep this going.I seems to take a while for replys if any at all. I just started on the computer again because I'm making time.

Hope to hear from you.

Moe[/b]

Hi everyone,
I have been reading on this forum for about the last 2 months. My father has been diagnosed with ALS. It started with his speech but the progression has begun. It is such a terrible thing to have to watch someone who had been enjoying life to the fullest begin to gradually lose their strength. My dad is doing okay with it. He was depressed for some time but seems to be coping okay now. Sure he has days that are hard to handle but he doesn't complain very much. Maybe if he did we would know a bit more of how he is really feeling. Some days he says that he can't believe he is so sick when he feels so good. His biggest problem is eating and swallowing. He starts to cough and feels like he is choking. I just want to let you all know what an inspiration you all are on this forum: Al, Fisher, TBear, Carol - you guys are awesome! When I start to feel frustrated or down about the whole situation I come on this forum and read some of your posts. You are all so kind and supportive of each other. I hope someday that I am able to encourage someone else who needs help the same way you all do. I look forward to reading each of your postings and though I am new here and don't have the understanding or knowledge like you all do of this thing yet, I hope that you will all welcome me to your group - SUPPORT LIKE THIS IS ABSOLUTELY ESSENTIAL.
Hope to hear from you all,
Bear2

Hey Bear 2,

Welcome to our group !! I do not know if I can deal with another "Bear" in my life or not, but , what the heck if your as cuddly and warm and loving as our "TBear #1" you will be more than accepted in my books. My hope is that you will continue to visit this site and to POST. We have had many, many peole visit the site, and post, and then, just like magic.....disappear. poof, gone, bye, bye..adios, etc. I left the site for a while because I felt that I was the only one who gave a damn about keeping the chain going, but to my pleasure I see that now that I am back it is going. I am so happy to see that. Anyway, welcome, and hope to talk soon.

Stay Strong, Carol D,.

...any bear is fine by me! Sorry that you're in a position to be here but glad you've ventured into our group. As Carol indicated, we're usually here to help... sometimes not all that reliably but eventually you'll get that warm fuzzy feeling... keep in touch!
... okay Al, with one weak hand did you come down in a spiral??? Hey Fish... hope your well. It was too cool on the deck to sit out and drink beer this weekend... so I've switched back to red wine! Still good...

Y'all take care (that's for Moe)

T.

Hello everyone, hope you are all doing o.k. Not possible to have too many bears so bear 2 welcome!
Have been very busy the last few weeks, sis needs help and Mom fell and broke a wrist!
But good things have happened too, Sis got a wheel chair, needs it for going out, so hope she can come and pick out her own groceries now, will get her out of the house a bit too.
A fund raiser was held for her last night, stupendous success!!!. Community is a wonderful thing we should never take for granted.
Nice to see you here Carol, missed you when you were away. Fisher and T Bear glad to see you both here too.
Take care all of you and God Bless Jane

Well folks let me tell you it was a beautiful day for an airplane ride. From 4000 ft you could see the CN Tower from about 15 miles south of Wasaga Beach. Not much wind but when you put your left foot out on the step at 80 miles per hour and try to grasp the strut. (The thing that sort of holds the wing on for you non pilots) with your left hand (the one that is weakened most by ALS) well interesting things happen. First you tumble backwards. That's ok because your chute opens automatically because of the static line attached to the floor of the airplane. A bit disorienting at first but ok. Then you say to yourself. Should have worn the gloves I brought. Temp is a little colder up here at 80 miles an hour. Damn hands stiffen up in the cold. Have to remember that next time(?) still manage to grab the toggles that are used to steer and they don't want first time jumpers doing anything too fancy so the turns weren't too bad, very gentle turns. Great view and it was fabulous. As good as my first solo in a Cessna 152 30 years ago. So after hanging around for 3-5 minutes in the air it was time for the landing. To flare you have to pull these toggles from over your head down as far as you can reach. Not as graceful a landing as I wanted. Did land on my feet but toppled forward and have a bruised knee for it. But I will tell you without sounding like a wimp that every muscle in my body is aching tonight. But I would do it again tomorrow. It was worth it. I wish I had done it sooner so I wouldn't hurt so much now but a red wine is easing some of the pain. I know I'm not as far progressed as some of the other folks here but I would have to say if you ever wanted to do something and thought you might not be able to do it. Go for it Try it. It doesn't cost anything to ask and you might be surprised what you can still do. As for telling the skydive people about ALS it is best to not mention it until after you have done it. The instructor just about crapped when I told him about it after. He had asked the 3 of us jumping why we were there and wanted to jump. We told him that we would tell him when we got down. He didn't know what ALS was or Lou Gehrigs disease so we had to go through the whole scenario for him. I think he thought I was nuts but he shook my hand and said congratulations and commended me for my courage. Kind of made a nice ending to a perfect if not textbook jump. I'd really like to thank my friend Terry for getting me off my butt and making me realize that I can still be productive and still do some of the things that I have put off for years. His dad is about my age and lives in Newfoundland and has ALS but a bit worse than me. Kind of long winded but as you might guess I'm still pretty excited about it. So I think it is about time to crash for the night and hope tomorrow brings some limber muscles. Night All.

Al:

You're my new hero!

T.

Al, I didn't see this commentary when I sent you an email. wow..what an exhillerating experience. I can imagine the look on the instructors face. But you did it, and more power to you. I think if I was faced myself with this disease, I may not jump out of a plane, ( the most I fancy is watching them land at the Brampton Flying club, it is not I do not enjoy flying, I would like to know I will get from A to B in once piece, my girlfriends husbands flies from there, has offered to take me up..umm)..anyway, I would sell what I had, and travel. Do what you want to do. Glad only your knee took the onset. I imagine every muscle in your body was impacted by this, so you are justified in feeling soar. Be proud of yourself!
To Carole and Tbear, I am trying to reread previous postings here to get a history. Al helped me with it. Carole, your husband has it? Tbear, you lost your wife to this?
Now we have Moe, Jane and Bear2. Trying to keep it all straight is a challenge, but I will pick up.
I am here because the best person ever to come into my life was diagnosed with this last year. Aged 44, incredible human being. I don't live with him so my perspective is clouded. He protects me from this, at the moment, all I am able to do is gentle probes. The all and all conversation to symptoms and doctors is in the works. What I do know is he is active physically, gets tired easily, has some male associated reactions to the medications.
I am trying to walk through this on egg shells at the moment. So I need some help. In passing a while ago, he mentioned some type of IV every 10 days, the site in the groin area needs to be bandaged. Can any of you tell me what this may be?

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

T.

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.

First time someone has been on and it showed who when I was here.

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.

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.

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,
Bear 2

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

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!

T.

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

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.

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!

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.

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.

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....

... 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!

Swimming in an Ontario Lake? Too cold this year. Although wife Lee said she swam in Lake Muskoka last week while visiting sister in law. Just below Bala. Too cold for me. I find my hands get really useless when they get cold. Trying to cut up cold meat or trim it is hard. Maybe I'll do the Michael Jackson thing and wear one glove. Won't be having sleepovers though. LOL. Cut the back grass today and did the 2 neighbours as well to give them a hand. New Canadians without lawnmowers. Just as I finished one of the sons showed up and said Hey : thought you were going to let me do that. Guess it's all in the timing. Next time I'll go looking for him. Tired me out pretty good. Ok after a short lay down. Still hjave some stiff muscles from last week . Cold is a little better. Having a hard time blowing nose or snarking or whatever they call it. Don't seem to have the pressure that I used to. Probably just another symptom of my slide into the murky depths of the netherworld. So everybody have a good day and I'll catch you later.