Where is everyone?

[Al]

I am new to this forum myself. I checked at 3am and the counter said that I was the only member on site but 18 guests. Obviously someone is looking for information. I don't have much to offer just being diagnosed in Nov. 03. Still in pretty good shape they tell me. I know summer is a busy time and it is for me but I sill make time for the computer. I know it is hard for some PALS to do the computer thing but it is not impossible. Let's try to comunicate more and get this forum up to what it was originally designed for. I have talked on email with some people from here and they are some of the nicest people and most helpful people that you would ever want to meet. This forum needs to get back on its feet. Don't let ALS beat us. Let's beat it to death with knowledge and participation. An informed group is a group willing to venture into the unknown. We are into unknown territory with most of this disease but by keeping informed and staying in touch we just might be able to beat it. How bout it guys. You with us or too apathetic to give a shit anymore?

[Jane]

Hello Al. You absolutely right. The forum seems to have come to a crashing halt.
I too, hope it will return to a much more active site, and wonder if a chat room format would be more successful, as we could then just talk to each other.

I am pleased to hear you are doing well. my sister has als, dx fall of /03. she is losing voice and speech rapidly, as well as use of arms and legs, although they are not going as fast as speech.

Fisher and T Bear where are you? Please post and keep in touch.
Jane

[TBear]

Hi Guys:

I was a caregiver for 4 years while my wife was striken with ALS. We lost her over 3 years ago. I have a perspective on how we dealt with ALS... which I've shared on occasion and I am still willing to impart my particularly twisted ideas. I'm sure that there are others who read the forum and will respond to specifics when they come up. For others, especially "Cals" and "Pals" its a matter of how much time they have available. In any sense I believe that people will step up when needed... keep the faith... we are still here!

Cheers!

[fisher]

heeeyyyyy, i'm here. Having a great summer regardless of weather.(lol)
Spent most of my days on the back deck bbqing and drinking beer. Every now and then I would look for a Dutch girl wearing a red string or a black leather bikini, but to no avail (LOL)
On a more serious note, I am progressing right on schedule (voice is pretty much gone ..... paralysis pretty much complete) but one good thing is that i have discovered a brand new way to sleep (transfusion chair) Any one having difficulty sleeping, I highly recommend them. Works great for me.
Time to go, sun is shining, beer is getting warm

[Carol Deboer]

Hey Fisher,

Sorry I dissappointed you this summer, but man, it has been cold. I had to wear a fur bikini for the first time!!!! Ot course , it was made of beaver!!! We are just heading up to Port 'Franks right now for the weekend. We spent 4 weeks up there this summer. It was great. Henry had a wonderful time. We took his motorized lazy-boy up there and put it on the deck. It worked great for me. It was easier on my arms and back. However, I have great biceps now. Henry is following right on track too. Same as you. Hard to see, hard to live it too., Anyway, got to goget ready, got to go to the beer store and stop and get a bottle of Coli Albani for sunday dinner. Take care, and stay strong. Think of you often.

Carol D. xoxo

[Jane]

Hello, everyone.
Glad to see your names on the forum. Carol, so happy to see you back!
I would like to hear from anyone who has had their insurance (drugs etc) benefits cut off.
Sis was working under a collective agreement and was told by insurer that she had to apply for a general managers package because she no longer qualified as an employee since she was not working.
She filled out all paper work early as requested and waited, and waited ... was told coverage would cease July 31. Finally told on Aug 23 that she was turned down for managers package. You all know about the expenses faced by ALS patients.
If you have run into this please e mail me at janeowl@hotmail.com and let me know how you handled it. Were you able to get insurance reinstated and if so how. Any info would be greatly appreciated.
Thanks so much Jane

[Kay.Demeter]

Hi, nice to meet everyone.
I have been trying to post for quite some time, and David (site administrator was wonderful in helping me this evening.) Although I do wonder what he is doing up at this hour. 2:00 a.m.
Thanks David!!!!
I am wondering if others have had trouble posting, and that is why there are views and no posts? :D

[fisher]

OMG! OMG! laughing so hard at Carol's beaver :lol: :lol: NO NO NO I don't mean that !!! I can't think straight :P :P

hope you had a good time at port franks, I'll bet Sunday was a downer :(


welcome back


:D

[TBear]

Carol... nothing can ever be funny again. See Fisher... Carol wasn't missing. It's just that we were looking for a blonde in a black leather stringed bikini... possibly in red... when all along it was fur!
T.

[Theresa2004]

Hi Al. I wrote to you in August on the email but I have been away again on holidays.
I was wondering how you were doing?
I agree with what you wrote, this is a site for support regardless of the reasons why anyone is here.
Lets keep this rolling.
Theresa

[Theresa2004]

Hi Al. I have been away quite a bit this summer, so I haven't been on. I sent you an email to home a while ago.
How are you doing these days?
You are right about this forum, everyone needs to support others. I am here to the rest of you for my own reasons, mainly for information as I know someone with this disorder.
I enjoy reading when I can peoples concerns.

[Al]

Hi Carol Theresa Fisher and TBear. I've been away most of the summer too. Down to Oshkosh Wis. for the biggest and best airshow in the world in the last week of July first of Aug. Show runs for a week. Great if you like aircraft. Got to Muskoka for 2 weeks. Weather not great but livable. Losing some strength in my left hand and breathing is crappy. Winded walking even a short distance and if I carry any thing upstairs I really feel it. When I lay on my back it feels as if my lungs are collapsing. Really scary. Ok to sleep on my side though. Fisher could you tell me more about this transfusion chair? I was thinking about going skydiving. A friend sent me a song by Tim McGraw called Live today like you were dyin tomorrow. Kind of a neat song in our position. So this friend wants to take me skydiving. Just might do it. After all what's the worst that can happen. Hell I could be run over by a bus. Or get ALS. TBear some things can be funny again. Hang around here I'll get you laughing again. As long as the moderator doesn't censor me. Take care folks. I'm home for a bit so I'll be keping a watch on you. Al.

[Jane]

Hi Al, GO sky diving! Saw a 90 year old man who did on the news last week, you can too.
Summer has been busy sis needs more help but still gets around with a cane, walking is o.k. for short distances. Has been having a problem with gagging, not sure what that means. Will see about speech device soon.
Take care all and please post, this is a valuable resource and a place to let your hair down, lets keep it alive and very well. God Bless all Jane

[Jane]

Hi Al, GO sky diving! Saw a 90 year old man who did on the news last week, you can too.
Summer has been busy sis needs more help but still gets around with a cane, walking is o.k. for short distances. Has been having a problem with gagging, not sure what that means. Will see about speech device soon.
Take care all and please post, this is a valuable resource and a place to let your hair down, lets keep it alive and very well. God Bless all Jane

[fisher]

Al, tranfusion chair ; available from your equipment supplier. mine is a used one but is in good shape . they recline , tilt , elevate your feet, support your head and generally conform to your body . If you want to see one , try your local hospital . Good luck.

[Carol Deboer]

Hi Guys,

Drop out of the sky!!!! Henry went skydiving, and he said it was the most exciting thing . I however, do not see any enjoyment out of falling face first to the earth at earthshattering speeds, not knowing if your shute will open or if you will land on the side of a house or a parked rock....But, to each their own. Al, do it. If you have the desire to do it, do it. And do it now. We know how fast things can change each and every day. How are you Al? We were away most of the summer too. Up at the trailer. I walked all the trails Fisher, I was looking for you!!!! I know you probably did not recognize me looking like a freak of wildlife and all ha... Anyway, how are you? Are you still able to get out? It does get more and more difficult doesn't it. I know we plan every little thing now. Henry too, is getting weaker and weaker, his voice is still there but is weak and we really have to listen to his words. Some days he is good, and some, well you know the story. Jane, how are you doing? How is your sis? Is she still on her own? I know the story with the Insurance can be a bit old pain in the ass, however, do not tick them off too much. Henry is on Disability Pension, and since he was self emplyed, does not have work benefits. He is covered under my health plan at work, and the government has been great. We really have had no problems. I think you should see if she could get coverage from her local CCAC, and I'm sure there is some one at your local social service offices that will help you with her CPP, or Disability Pension. Get these wheels in motion now, it may take some time. Most of your drugs should be covered. Henry has had little or no troulble with his feeding tube. The tube was pulled out about 2 inches by accident when he was being lifted, and we had to lay him on the bed and manually insert it back into him. Ouch!!!! He was really good about it. I find when flushing, when you hold the syringe flat to the body, it takes a better push, when you hold the syringe upright more it seems to go better. That has been our discovery. An easy steady push too, do not force it, it should not have to be forced. Coke, yeah, things go better with Coke. Yeah, right. Als and Coke!!! Who ever would have thunk???!!!Well, Hello to all, We are just plugging along here, I am working and trying to keep everything running smoothly, and we are still smiling and hoping and praying for a cure. Stay Strong Everyone. Love to all....

Carol D. xoxo

[TBear]

Hi Al:
Personally, I've never been thrilled with the idea of jumping out of a perfectly servicable airplane... but my daughter just did it in Australia. How was the Airventure this year. If you're an aviation nut it's the mecca for all kinds of flying but usually hot and sticky... lots of information though. I can't imagine landing there at the height of the operation with both runway's in use and the ultralights and helicopters in the south operating as well. The local RAA shop is in Brampton so it's good for you not to have to travel far to see the homebuilts. I have a few years left before I retire and have been thinking about building. Every year I put it off it gets a bit more expensive.
Carol, I used to pull my wife's tube out all the time when I moved her... most of the time it went well, but the odd time I would flip the top off the tube as well... usually when I was in a hurry (and not being careful). With fall in progress, I'm sure that Fisher, Al and the rest of us will be waiting for the next edition of your bikini fashion statement... hmmm maybe a photo can be attached ... or maybe the censors will only let this go so far...

[Al]

Wasn't too hot and sticky this year. Rain one morning we were there and hot and Sunny the next. Cloudy on the third day but was too tired to go so just sat at the campsite and had a couple glasses of red. Lots of walking but before going I applied for a Handicapped sticker for the Van and the Handicapped parking is real close there so it wasn't too bad. An amazing site to see for the first time. Used to have a Private License so planes are one of my passions. Probably only saw one tenth of it in 2 days. Hopefully I'll still be walking next year to go again. Not much change that I can feel except for my breathing. If I lay on my back it feels as if my lungs are collapsing. Anybody else get that? Also read somewhere about an interaction between Amitriptyline and Rilutek. Can't find it again and was wondering if anyone else saw it and remembers where they saw it. Thought ALS wasn't supposed to affect your mind. Can't remember a thing. Make notes all the time. Gotta go. Lee just brought home fish and chips. Hope everyone is well.

[TBear]

Hi Al:
I haven't been to Airventure for a couple of years... and I still do fly (commercial rotary and fixed wing). It's been my life for over 30 years. Ironically, my wife would never go with me... too dangerous! The weather this summer has been brutal to say the least, but a little cloud cover is sometimes a relief at Oshkosh... so long as it doesn't disturb the airshow!

We never had any problems with combining Amitriptyline and Riluzol... we did, however get a stern talking to from the V.O.N. over Mary's wine consumption while she was on Amitriptyline... apparently the glass or two with dinner each night could have caused her to become incapacitated! I reminded the V.O.N. that she'd already given up operating heavy equipment which didn't go over real well with the case manager. I was given a stern reprimand by our family doctor who then asked me to cut her consuption down... I asked how much down... she said "oh... lets say a bottle a day!" At least somewhere there are people who have both a sense of humour and have their heads screwed on forward.

Take care Al... and a glass of red goes with absolutely everything! I'm going to try an Italian " Dolcetto d'Acqui" ( about $15.00 at the LCBO) tonight.

T.

[Al]

The article or posting said that taking the Amitriptyline with Riluzole would counteract the effect of the Riluzole. Talked to my GP and he says if I'm worried about it to go off the Amitriptyline. Have an appointment at the Clinic in 4 weeks so unless I can find the article I'll just wait to see what they say. They're the ones that put me on it. You would think that they would be up on their contraindications. We shall see. It sure does dry up your mouth though. Need a bottle of water by the bed and in the am it feels like someone dumped sand in your mouth. Hey TBear you wouldn't happen to have any Dash 7 time would you. Friend of mine is looking for pilots. That is unless you have one of those outrageously high paying jobs at Air Canada. Carol: How old was Henry when he went skydiving? Did he solo or tandem jump and did he have ALS when he did it? I'm a little worried about the arm strength required to flare the chute on landing. Right is not bad but left is a little weaker. As for the wine they did a check of my liver enzymes for the first 3 months and every 3 after and so far they are ok. I asked the doc if I could continue drinking as much wine as I had and he said it probably wouldn't kill me. LOL. Lee is away for a few days so I'll probably have lots of time to be on here so keep on posting folks. Night all.

[Carol Deboer]

Hi Al,

I am happy to see some people using the forum. I was so upset a couple of months ago, I felt that I was the only one that cared about keeping this thing going. I felt that I did not get any support, I was just giving it. I felt really bad because I felt all alone in this battle. My hope is that this circle keeps going and we continue to live with hope and support from each other, God knows we need it. As for the skydiving. Henry says it was one of the most excilerating things he has ever done in his life. It was 20 years ago, obviously before als, and he jumped single. It was awesome he says. He says go for it, go tandem if you have to, or find a way to rip without your arms if they are that weak. You sound like you are still quite strong yet. Are you still working? And if you are, what do you do? I also think by the sounds of things, that you have a good support system in place. That is the key. With all the changes that are going to take place, and with the ones that already have, you need lots of support and lots of humour. The later being so important. We laugh all the time. It is such good therapy. TBear, you sound like such a big ole Teddy Bear, I think we both have the same sense of humour, a little on the "off" side, but that is good!!!!! Henry said to send of photo of myself to you guys, but in all honesty I am going to make you all wait till Christmas!!! Then I will send you a present to open. You will then get to see the blond bomb dressed as an elf!!!! Or Santas Helper.....Al, do you go to Dr. Strong? Are you going to the clinic on Oct. 12? We will be there that day. Let us know. Anyway, I have to go to work now, but Henry says that you should JUMP......Live to the max.. Take care guys, talk to you soon. I am glad to be back and to have some interaction with my buddies again. Hope the chain keeps going.

Stay Strong... Carol D.

[Al]

I retired last june after 32 3/4 years with the fire dept. I was a Captain for the last 22 or so. I was diagnosed in Brampton Oct. 27/03 by a Dr. Tullio. Great guy and pretty smart too. I first noticed the fasciculations in Dec. of 02 while in the Philippines for 7 weeks. I was tired all the time and thought it might just be the heat but when I got home in Feb. and was still tired I went to my GP. He did all the tests and sent me off to the Neurologist. He said ALS but sent me to Dr. Bril at Toronto Gen in Nov. for a second opinion. She is a real piece of work if you ever meet her. She thought it could be Multi Focal Motor Neuro[pathy. One of her colleagues disagreed with her and said ALS too. She tried me on a 2 day regimen of IGG intervenous transfusion. Had a real bad reaction to that. Then she wanted to try me on Cytoxan. A cancer drug. Had a reaction to that and said I'm out of here. No more of her. I was referred to the ALS Clinic at Sunnybrooke. I see Dr. Gawell there. On Rilutek and Amytriptyline as well as a few heart drugs. Forgot to mention the Quad Bypass in July of 99. That was the biggest reason for retiring. Couldn't go back on the trucks and the stress of staying wasn't worth it. So I had to give up flying and scuba diving. Think I can still hold up a motorcycle to go for a ride. Going to a friends tomorrow so if the weather cooperates and he hasn't sent the bike on loan back I just might take it for a spin. Have been married to Lee for 34 years now so I guess she's here for the long haul now. Have a daughter 30 who is a R.N and works full time as an Advanced Care Paramedic. She recently (Dec. 20) married a police officer. Son 33 lives in Angeles City in the Philippines and has a Web Site design business with a friend of his. And that's about all I can say for now. Probably have the record now for the longest post. Take care everyone. Al.

[TBear]

Hi Guys:
... no Al, I'm not one of those obscenely wealthy air taxi drivers. Most of my time is rotary and my wife retired me from that in the 70's. No Dash 7 time... I work/fly a PA31 and am within a couple of years of retirement ... except that I'm having too much fun right now. I still don't think that I'd jump out of an aerodyne though.... something in my brain that tells me not to leave an airplane that still wants to fly!
My wife went to Sunnybrook as well but her Neurologist was Dr. Cashman. I'd be interested if you still had the reference for the amitriptyene/riluzol contraindication.
Carol, she also went to London on one of Dr. Strong's research programs. We met with Anne every month! I'm sure that both Fisher and I will be waiting with baited breath for your picture to be posted... although I don't believe that I've ever seen an elf in a black leather string bikini... or will it be the fur one?
Take care all.
T.