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[Cricket]

Bonjour Evelyn! Welcome

 

[canmark]

Hi Evelyn,

I was diagnosed at Sunnybrook (Dr. Zinman), as well. I was diagnosed in July, 2013. I first started noticing symptoms in late summer 2012, but didn’t even visit a doctor until January 2013. I was referred to a neurologist at Toronto Western, and then he referred me to the ALS clinic at Sunnybrook. My aunt (my father’s youngest sister) was diagnosed with ALS in June, 2013 (in Vancouver, where she lived). It’s not clear whether we have familial or sporadic ALS. There is no history of ALS in the family, and no one else has shown symptoms. It is perhaps coincidental that we developed symptoms at the same time, despite the 20 year age difference.

Sadly, she died unexpectedly in October, only four months after her diagnosis. She was in good health, but seemed to have caught a cold or developed pneumonia, and somehow had heart failure and passed away in hospital in Alberta. It was very quick and sudden.

Like you, I am not showing bulbar symptoms at this point (although my aunt had been having some difficulties with swallowing before she passed). I have increasing muscle weakness, and variously use a cane, rollator and manual wheelchair when outside of the house. I had a major fall a few weeks ago, falling backwards and hitting the back of my head on the stone walkway in front of my house. I use Dragon Naturally Speaking voice recognition software to help with typing long blocks of text. You speak into a microphone hooked up to your computer and the software types it out as text.

Have you been to any of the ALS support group meetings at Sunnybrook? I have not, but was thinking of attending. I live outside of Toronto and was planning to go to the York region ALS society support group meeting (in Aurora) in November. It will be my first time attending such a meeting.

 

[cervus]

Hi Evelyn. So sorry about your ALS diagnosis and about the cancer before that, with you and your family. My husband had two types of cancer ( one cured and one under control) when he was diagnosed with ALS. Our ALS society provided us with every piece of equipment we needed including a lift chair and bidet seat. Brand new seat which we returned when it was no longer needed although I would have loved to have kept it! We got a splint similar to Elaine's that was ordered and custom made and fit through our OT. Don't be shy to ask! Take care. Yasmin.

 

[Eacz60]

Hi Evelyn,

I was diagnosed at Sunnybrook (Dr. Zinman), as well. I was diagnosed in July, 2013. I first started noticing symptoms in late summer 2012, but didn’t even visit a doctor until January 2013. I was referred to a neurologist at Toronto Western, and then he referred me to the ALS clinic at Sunnybrook. My aunt (my father’s youngest sister) was diagnosed with ALS in June, 2013 (in Vancouver, where she lived). It’s not clear whether we have familial or sporadic ALS. There is no history of ALS in the family, and no one else has shown symptoms. It is perhaps coincidental that we developed symptoms at the same time, despite the 20 year age difference.

Sadly, she died unexpectedly in October, only four months after her diagnosis. She was in good health, but seemed to have caught a cold or developed pneumonia, and somehow had heart failure and passed away in hospital in Alberta. It was very quick and sudden.

Like you, I am not showing bulbar symptoms at this point (although my aunt had been having some difficulties with swallowing before she passed). I have increasing muscle weakness, and variously use a cane, rollator and manual wheelchair when outside of the house. I had a major fall a few weeks ago, falling backwards and hitting the back of my head on the stone walkway in front of my house. I use Dragon Naturally Speaking voice recognition software to help with typing long blocks of text. You speak into a microphone hooked up to your computer and the software types it out as text.

Have you been to any of the ALS support group meetings at Sunnybrook? I have not, but was thinking of attending. I live outside of Toronto and was planning to go to the York region ALS society support group meeting (in Aurora) in November. It will be my first time attending such a meeting.

Hi canmark, I have Dr. Zinman as well. So sorry about your aunt. I haven't been to the support group at sunnybrook though Myrna recommends it. I am west of Toronto so it is quite a hike to get to Sunnybrook. There is a group in Kitchener which I am contemplating. I get very emotional when I talk about my illness so I'm hesitant. I don't want to upset anyone with my sobbing.

 

[ottawa girl]

Evelyn,

You will not upset anyone at a support group. Everyone cries.
Don't hesitate just because of that.
If you don't like it, you can leave.

 

[sf58]

Hello,
God bless you! My heart goes out to you. I too have that falling problem. Face plants are no fun. I am involved in the Tirasemtiv clinical trial. Too early to tell if it helps?

 

[ottawa girl]

Welcome sf58.

Sorry you had to find us.

Hope you're staying upright! Be safe.

 

[canmark]

I attended the ALS support group meeting at Sunnybrook today. There were 12 people in attendance. The moderator is a person with ALS, who is also on the board of ALS Canada. She and another woman were in power wheelchairs, a number of others used walkers, and a few more were able to walk unaided. Four of the attendees were unable to talk, but use iPads with a speaking app (Speak It, I think it’s called). It was a diverse group. Everyone introduced themselves and there was some general discussion.

I found it interesting that some of the people were seeking alternative treatments, including acupuncture, from a doctor outside the country. I mentioned that had seen the movie Dallas Buyers Club, which was based on the true story of a man who was diagnosed with AIDS (in the 1980s) and sought alternative treatment from a doctor in Mexico. In the movie, the medical professionals don’t approve of these alternative treatments, yet the patients feel they have no other choice and are doing whatever they can to treat themselves. I thought it interesting that ALS patients are going through the same thing, often seeking alternative treatments in addition to what is medically prescribed.

The Director of Research for ALS Canada also spoke briefly to the group about a recent trip to Ottawa to lobby for ALS support programs. He did make a good case for the work that ALS Canada does – providing funding for research, lobbying the government, and providing direct support to people with ALS.

I have also attended a meeting organized by ALS Canada in York region. This was a smaller meeting with only five people in attendance, although caregivers are invited to attend and could speak amongst themselves.

I found the support group meetings to be interesting. It’s nice to be able to talk to people who can understand the issues you are facing and can offer you tips and advice and support.