New to the Forum

[jrtu]

Hi everyone,

I feel privileged, albeit unfortunate, to join such a special forum full of caring, inspiring and informative people.

My diagnosis of limb onset ALS came in July and it is progressing alarming quickly. I won't go into my physical details because all of you know only too well what this dreadful disease does to a person. I found the link for this forum on George's website and I've visited often in the last three months. Now that I think my denial phase is over I would like to participate - not just read anonymously.

My first appointment with the ALS clinic (Sunnybrook in Toronto) since my diagnosis there is in two weeks. We live 2 hours north of the hospital but because of morning rush hour traffic it took us closer to three hours when we went in July. I found that an entire morning at the hospital and about 6 hours in the car was very exhausting.

My question to all you very knowlegable people is "Is it worth it?" I mean, do these clinic visits help us as individual PALS or are they more for data collection? I guess I'm looking for information about what goes on when you attend an ALS clinic and does it help.

Thank you very, very much and God bless you all.

Deb

 

[Jennifer51]

als clinics

I dont know about your side of the pond, but even though I found it a treck to go to an ALS clinic in London...I have certainly found it helpfull....in the uk they make sure that every little bit of help you need is provided either on site or by sending off the appropriate letters to make things happen. Then they have TIME which my normal neuro does not and you can talk to all sorts of professionals who are there to help. PLUS for me, they are linked with other neuros and I have far more chance of getting on any trials...which I want to do. In the UK if you dont go on a trial and they find a drug which helps or cures something, then it has to be proven AND go before a panel (called NICE...what a damn stupid name) to see if they will approve it for general use...and that can take anything from 3-5 years...so even if they did find a cure tomorrow, unless you are on a trial, then you can t get the drug anyway. If you happen to be on a trial with even limited success, then you can stay on the drug. We dont have the luxury of time to wait around for men in suits to decide IF we should be allowed the drug even when it is proven...so for me, any chance to help me must be taken...and one small point, I dont feel so isolated and alone, knowing there are others who understand and care. So for me it is worth the effort...dont know if it works the same in your part of the world.

 

[BethU]

Hi, Deb ... so glad you found this forum. ... but truly sorry that you had to seek us out.

In my experience, it is absolutely worth it to go to a clinic, rather than a private neuro's office. Just the fact that clinics have the latest equipment, information about and connection to trials, and a whole battery of specialists makes it worth it. But even more important to me is that I feel I have a personal connection to the people at the clinic that I never had with private-practice neuros. I get much more "face time" with the clinic neuro, and an opportunity to really ask questions.

My drive to the clinic is only 17 miles, but this is L.A., so it's an hour and a half there during morning rush hour.

Take care.

 

[Al]

Hi Deb. My in laws live just up 169 at Torrance. I know the drive to SB can be a killer. Call Olive or Myrna at the clinic as I was told that you can get a room at the hospital the night before fairly cheap. Going to the clinic is a good idea because you are dealing with people that know ALS whether it is the Physio or Occupational therapist or the Pulmonary Dr or the Neuro. They can tell you about drug trials, new equipment and someone is usually there from ALS Ont to explain there services. I have a friend in Lindsay and she went through a terrible time getting a power chair from CCAC. It was totally wrong for an ALS patient. She has now one on order from the clinic that will be much more suitable. If you are well along in the stages of ALS then going to the clinic might not be an issue but if you are new then it is important. That's my opinion and I've been going for 4 1/2 years now. I still like meeting people like you there and talking about how to get through this all. It takes us 3 hours sometimes from Orangeville. Not fun but the people I meet there are worth it. If you want, you can email me at [email protected]

AL.

 

[jrtu]

Thanks

Wow - thank you for helping me make an informed decision. I'll go to the clinic. I didn't realize what a good resource the clinic will be for me. I thought it would be just another doctors appointment!
I'm glad you guys are here.

Deb
(Happy Thanksgiving Al)

 

[Zaphoon]

Hi Deb,

Sorry to hear about your diagnosed.

You mentioned in your post that you were diagnosed in July. Have you been referred to the clinic for a 2nd opinion or have you already had a 2nd opinion?

(Never mind, I re-read your post and saw that the diagnosis came through the clinic.)

Zaphoon