Old 09-15-2018, 12:31 AM #1 (permalink)
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Default Hope without false hope

After reading a few threads about the Vancouver ALS Clinic I spoke to the main contact there about "Giving Hope without False Hope." I sent a follow up email listing some things like the supplement list Sunnybrook gives out (thank you Al!) so people can feel they are doing something.

I am hoping you can help me with a project. Can you please share with me any positive things any healthcare professionals said to you or did that lifted your spirits or gave you hope? For example, a respirologist said to me "we don't know what is going to happen. Maybe it will not progress past your legs." It did, but it made me feel better for a while and I never felt bad she had said it.

I will compile the posts and share them with the clinic.

I would love to hear from PALS and CALS. Thanks all!
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Old 09-15-2018, 05:22 AM #2 (permalink)
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Default Re: Hope without false hope

Hi Ted

Interesting project. Good luck.

My doctor ends every visit by talking about things in the near research pipeline. For example in 2015 she was talking about radicava. Most recently for me it has been gene therapy.

She is also open to supplements and will make recommendations.

I don’t think I would have been happy if someone told me it might not progress beyond my legs as I always knew it would but I was told after 6 months that it looked like slow progression which of course made me happy but that only worked because it was believable to me.

I did once have a doctor I was seeing for a research visit say he had patients who were still walking after 10 years. No prognostications about me just the statement which of course triggered a hopeful thought by me.

People at my clinic are positive and upbeat. They are research focused which helps but I do wonder how they do it.
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Old 09-15-2018, 07:24 AM #3 (permalink)
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Default Re: Hope without false hope

All though not a health care professionals every morning my cals says “ here’s your coffee “ that gives me hope !

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Old 09-15-2018, 07:41 AM #4 (permalink)
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Default Re: Hope without false hope

I was reminded of this story from the doctor’s perspective The story of Dr Bedlack's tattoo
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Old 09-15-2018, 10:24 AM #5 (permalink)
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Default Re: Hope without false hope

I think I read in some post where Nikki said every person with ALS is unique, like a snowflake. I found that image soothing.

I also saw a woman in my local support group who died peacefully of respiratory failure from ALS but was still able to walk and use her hands just before passing. I met another guy, ten years in, who can still speak and eat, and Iíve seen him around town with his wife and daughter.

Then there are stories here of people stable in a plateau for a long time (Al the firefighter comes to mind) and people getting out and about even on a ventilator (Diane H).
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Old 09-15-2018, 10:59 AM #6 (permalink)
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Default Re: Hope without false hope

In terms of things health care professionals have said ó my neurologist has reiterated several times that progression seems to be slower in younger people.

Iím 58, not exactly young, but my neurologist keeps telling me I have youth in my favor.
Ha, ha. But Iíll take it.
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Old 09-15-2018, 11:30 AM #7 (permalink)
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Default Re: Hope without false hope

I've been told by several doctors, "keep doing exactly what you are doing."

I've been taking a lot of curcumin for over two years. Now there will be a clinical trial of curcumin and that gives me hope.

The first medical cannabis doctor I met said he honestly believes cannabis not only helps with symptoms but might slow progression gives me hope. With that in mind, I helped convinced my local neurologist to take in a medical cannabis doctor as a partner.

I don't have my head in the sand but I also don't keep doctors around who have the attitude of "go home and get your affairs in order."

Last visit my GP ordered a mammogram, bone density test, and told me to get my last crown repaired. She told me she thought my progression was slow enough to be concerned with routine health care.
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