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Moderator emeritus
May 25, 2004
NW of Toronto
Found a bottle of Fat Bastard Shiraz today at the LCBO. $14.95 a bit pricey when you compare it to what you make/bottle yourself. I am going to take to Elane's for dinner tomorrow so I will tell you all if Ontario tastes are the same as Alberta tastes. I have also noticed the slowness of the site and just put it down to slowness of my server Rogers. BTW went off the Levadopa for muscle cramps and had one hellish night. Started taking it again. Going to Doc. Monday to see about alternatives.

Has anyone else noticed that the time code on the site is still on daylight saving?
Hi Al, first, I think it is the site. I have sympatico, and it has been timing out since yesterday. I tried it from work also, since our computers are much faster, same problem.
I ran an updated adware scan tonight, got rid of some insects along the way, seems a bit better.
Glad you found the vino, let us know how it is.
It doesn't sound as if you are doing very well. Hopefully the doc can come up with a solution.
Later to all
I would guess that in the long run I am doing ok. I have felt crappy all week. Maybe it is the weather. Maybe I need a vacation. Just been a down week. I don't know. Had a nice chat last night with Mike and Giselle on the cdnpals website. Maybe a few more might show up next time. It's nice to be able to talk in real time with the gang as I call them. Mike has a poll going on the site to try to find out when is most convenient for most of us so get in there and tell him when is best.

I see at this time there are 4 guests. Why don't you log in register and put your 2 cents worth in. We are a friendly group and you wouldn't be here if you didn't have an interest in ALS. Let us know who you are. Maybe we can help.
Hi Guys,

How is everyone? Finally got my own pc up and running again. It was 4 weeks down. Long time to be without, when I finally sat down to see how many e-mails I had , I was shocked to see 576.! A lot of it was junk, but a lot of it was mail. Took me all night to read and to delete! Henry had a awful time with leg cramps too, Al. Henry, howver just stuck to the 800ui a day Vit. E. It took a while to whittle away at the cramping but it did finally work. He took the pill at night before bedtime. Rubbing the legs before bed also helps. It really relaxed Henry and got the bugs out! He is not having too bad of a time this week with the feeding tube and the related pressure on this lungs and gas. I still have him on the Gas-X, and this seems tobe working, so, for the meantime I will keep him on the maxarane and the gas-x. He has had a good week this week, with the mild weather he has been out everyday, with the exception of the rainy days. I would love to chat online with you guys, give me the address and the time and I will join in. Hopefully, others will too. Jim Oliver went to the Toronto Syns. last week and he said it was very enjoyable. He said it was interesting to see other als people and how every case and patient is different. Did you go Al? Anyway, just thought I would check in, take care, stay strong, and talk soon. Love to all,

Sorry I missed the chat. I'll check out the poll page and give my part.

Carol - glad to hear Henry has been outside. That has to be good for the psyche.

Al - sorry to hear you had a crummy week. Maybe you and Lee can get away for a weekend. It is amazing how much that even helps.

I had a good end of the week. After last Wed. night when I posted, I felt much better. I made an "impossibly east pumpkin pie" recipe from my Betty Crocker cook book. (It has everything!). I also made it swimming at the gym Sat. morning. I guess I'm really a morning person because my plan had been to go Fri. evening and then get it over with before the holiday got closer. But, I was exhausted by Friday evening. Hung around all evening and went to bed early. I got up Sat. at 5:30am with Nathan. He was going hunting. Then I went to the store, gym, got my allergy shot and was home eating my breakfast by 9:30am!

Thanks for the advice Melissa. Lee booked us for a week in Cuba leaving on Dec. 10. A week of Pina Colada's just might make me feel better. Carol. I was at the Symposium but don't know what Jim looks like so am not sure if I met him. I'm sure we passed by each other at some time as I posted in another topic.
Cuba..go for it...forget Carol...can you fit me in the suitcase?
Enjoy it...good for you..

Is the group still meeting on Dec 6th? Email me if they are, my oldest is on exams so who knows if I can sit for more then a few minutes.
Take sunscreen....
Hi Melissa, if I am lucky I try to catch up once a week.
How is it going, have you booked any time with the doctors?
Al - That's great about Cuba. Ooooo, the sun, the margaritas, the beaches. I'll bet Lee is thrilled too. Wish we could meet her some day. She sounds like a great woman like the rest here.

Theresa - I've gathered together the phone numbers to make some calls. It has been so hectic here at work I haven't had the chance to steal away yet. However, Nathan has agreed to let me visit with him next week at the neuro-psych doctor and I do have some questions for him. Of course, he's leaning toward the "all in your head" camp so I don't know if he'll be much help. But, I'm going to tell him like I see it and give him (the Dr.) some things to consider and check out. Luckily, he is a nuerologist as well (treats lots of people with Parkinsons, ALS, Alzheimers, etc) so he does have knowledge on that end. Thanks for asking Theresa and I'll keep you posted. I'm glad to read, on some post or another, that this forum helps you keep from throwing in the towel, it does for me too, and I know I've felt that way a few times lately. It seems like for a few days I take the bull by the horn and do all the things I need to do to take care of myself and help out with him, then the next few days I feel like I want to forget it, what difference does it make anyway. Well, those are my thoughts for now.

Thanks everyone for your encouragement to each other. -Melissa-
oh wow al! cuba! too bad i'm afraid to fly! i don't go anywhere exciting! can't wait to hear all about your trip! 8)
Hi Melissa, good for you. Don't let the doctor stone wall you, and if you don't get satisfaction tell him you want a referal to this Dr. Strong. What scares me about this is if it is not ALS, which of course praying it isn't, it could be something treatable, but if it goes undetected, could be damaging. Maybe they need to start from the begining with a fresh set of eyes and get the necessary tests done. There are many days and moments I want to say to hell with this, I have the freedom to walk away, but I can't unless I am given no other alternative. He is a fabulous person in every aspect except the Superman mode where he can take on the world, and rarely asks for help when he is struggling. I am worried, upset, and extremely angry at the moment, and all those emotions are getting in the way of day to day operations. When the anger peaks, at least I do some housework and run around the house getting the chores done, helps work it off.

This is a rollercoaster for everyone, no matter who and how it touches us.

I think Al and Lee should invite us all on this holiday..the more the merrier!

Remember, stay aggressive with the doctors. Good luck.
OK guys Pay attention. Read my posts word for word. I look like BHUDDA and have the wisdom of him. lol. I did invite everyone. I would love to have you all come with us. We have a Cuban god-daughter and many friends. We don't spend all of our time in the resort. Most of it is spent in Cuban homes partying with them. They would love to meet you all. I would love to win mucho dinero and take you all with me. If you want to come and I don't win the lottery this week let me know.

Melissa. Americans are prohibited from going to Cuba. Come to Toronto and fly from here. Cuban Immigration will not stamp your passport so you were just visiting me RIGHT? No Problem. We have ways around the silly regulations. Just like the CIA.
... just my luck that the week you are in Cuba, I'll be in Thunder Bay! Perhaps we should all head to Brampton to rub Budda's belly ...for good luck! Mucho dinero would be a good insulator against the cold north winds! (unless is all in pesos)

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