Clinic Apr. 12

[Al]

Anybody going to be at Sunnybrooke this morning. Maybe we can do coffee. I'll be the guy sitting there that everyone says. Geez Al you look good. Only on the outside man only on the outside.

 

[TBear]

...gotta go north today. But say hello to Myrna and Olive for me!
t.

 

[bear2]

Hi Al,

Congratulations on the baby. I am sure that you will make a great grandpa.

You and several others on the forum seem to go to the ALS clinic quite frequently. What do they do for you there? Do you have testing done and if so what type? I'm sorry to sound stupid asking about it but there is no ALS clinic anywhere near here and I'm wondering if it is beneficial. My Dad is progressing quite rapidly (at least it seems that way to us, but then again this our first encounter with this) and I'm wondering if there are things that he should and could be doing to help. He hasn't been back to the neurologist or to any health-care provider since his diagnosis (summer of 2004). He had his prescriptions renewed by phone and has had nothing done since. Anyway, I'm just wondering, so maybe you could enlighten me a bit if you had a few minutes,

Thanks
bear2

 

[Al]

I usually go to the ALS Clinic at Sunnybrook Hospital roughly every 3 months. Mostly for routine check ups. The Neurologist hit my arms and knees with his rubber hammer said Hmmmmm. Not as good as last time. He then asked if I was having problems with any of my meds and we discussed lowering one of them (Baclofen) I take Quinine for leg spasms so we felt I may not ned the Baclofen so I'm going to reduce dosages. Next came the Occupational Therapist. My hands are getting pretty skinny and thumbs are curling under. We talked about getting hard braces for night time wear and soft braces for daytime. I'm going to another Hospital tomorrow for the hard braces. The soft ones we can get one kind at Shoppers or call the company direct.
Next came the Respirologist. I have been on the BIPAP since I saw him last so we had a discussion about how I am adapting to that. He wanted to know if there have been any other changes in my breathing or any concerns I may have. That was about it.
As for the stupid question, there is no such thing here. We all need some knowledge and this is a pretty complex disease. And things are different province to province so what goes on here might not be what goes on where you live. If you don't ask. You don't know. Take care have a good day.
Myrna the coordinator asked me to talk to another gentleman who had recently been put on BIPAP so we compared the differences in our machines and face masks and a few other ALS topics.
We talked to the Regional Director of the ALS Society of Ont. Had a coffee with her and that was about it for a visit.
Most of them have been similar and sometimes there will be a resident (training) so you get a more thorough exam for them to get more experience with the disease.

 

[Al]

Just realized when you are long winded as the last post was it will pop things out of order on you. You should get the drift of the day though. One other thing though. Everyone keeps telling me that I'm moving slowly. It doesn't seem that way to me. Maybe it's just a matter of your perspective. You see your dad losing his mobility among other things but if you don't have anything to compare it with it can seem worse than it is. At the clinic you get to talk to other people in the same boat and see that things just maybe aren't as bad as we think. That's only one opinion. I could be wrong.

 

[TBear]

Hi B2
We used to go every 3 months as well to get an update on meds and any physical changes. The Riluzol was doled out there (Sunnybrook) in 3 month lots and only available from their pharmacy. In short the clinic is a good single source for all of the "stuff" that you need to deal with ALS... including some of the best that science has to offer in state of the art treatment.

T.

 

[rosebud]

Hi Al. Sorry we missed you. I was at Sunnybrook with my mom on the
12th but I hadn't seen your post. We'll be back there on the 21st for a
seating clinic at l0am and again on the 26th to see the Dr. I would have
liked to meet you because my family & I feel very alone and confused.
Sandy

 

[Al]

Sorry we missed you Sandy. I was there for 10:30 and got out around noon or 12:30. I don't go back until June 7 unless something comes up. I get to go to West Park on Mon and Tues for reassesment of my BIPAP. They are really great there. Never in all my life would I have thought that I'd be wondering which of 2 hospitals had the nicest people. Sunnybrok is great too. They see a lot of patients in a day but they sure try to make you feel special. What part of the city do you live in? The ALS Society has a couple of support groups going and are trying to get more. If you are feeling alone and confused check into the support groups. We have one in Brampton but have been meeting mostly about our Walk for ALS on June 11 at Erindale Park in Mississauga (free advertising) and we had just started in the fall of last year. About 6 couples with a spouse or loved one with ALS get together once a month to chat and just compare stories and discuss different options available to us. Very informal and friendly.
Some of the other groups are more structured and have guest speakers but we haven't got that far yet. We're still at the get acquainted stage.

If that doesn't work for you let me know and I'll give you my number and we can talk or meet at a clinic day. Don't despair. You are not alone.

 

[Elaine]

Hi Sandy,
I read your post about going to the clinic on the 26th .I have an appointment at 10:30.I would very much like to meet you and your mom.
What time is your appointment?Let me know and we can meet and have a chat. This whole als thing can be very confusing at times.And Al is right you're not alone we are here to help each other.This is the place to find out so many guestions that you might have.There are so many good and caring people on this forum and I might add with some pretty good advice.
They all try to help in their own special way . You will even laugh and you know what they say{ Laughter is the best medicine} it really does help.
Elaine

 

[rosebud]

Hi Al & Elaine

So glad to hear from you both. Al, my family & I are definitely interested
in a support group. We all live in north Toronto, Thornhill & Richmond
Hill so we really would like to find a group reasonably close. (Brampton
is a little far). I have 3 sisters who would also attend and possibly PWALS.
If you know of a group anywhere in the north Toronto area please let
me know.
Elaine- our app't at Sunnybrook is at l0:30am also. We are meeting with
Dr. Newall and my sister Linda, our Mom and I would love to meet with
you. Let's set something up.
Sandy

 

[TBear]

Hi Sandy:
When you go to Sunnybrooke, ask Myrna about support groups. She runs the clinic there and will know if there are any in the north end close to you. Otheerwise, if you have the courage... and sense of humour, there's this forum!

T

 

[Al]

Or on Monday call the Toronto Society office and ask for Helen Taylor. She is the Regional Mgr. and will know of any new or running groups in the North end. 416-497-2267 ext 227.

 

[Elaine]

Hi Sandy,
That's great news your appointment time is the same as mine.I think we
will be meeting in the waiting area.We're always there about a half hour before my appointment.The clinic is always busy so they never take you on time.We'll probably have an hour. What do you think? Let me know if that's all right with you .If not we can plan something else.
Thanks Elaine