@sdlandis
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Steve L. replied to the topic Volunteering to participate in ALS research: what are your pros and cons? in the forum Research Topics 7 months, 1 week ago
I’m a family member of an ALS patient so I hope you don’t mind my offering my thoughts. We lost my dad three years ago, at age 89, due to an unrelated condition. He had been symptomatic bulbar form for only 4-5 months and got his diagnosis about a month before we lost him.
Those last couple of months he kept telling me that he really wanted to…[Read more]
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Steve L. replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 12 months ago
Dagmar,
Thanks for the copy of Lou’s speech. I have to admit I’ve never read or watched the full speech. It brought tears to my eyes as I read it.
I took the liberty of copying the text you gave us and sent it off, in an email, to fifty or so people who might appreciate it. No better way I can think of to honor Lou and to honor those who…[Read more]
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Steve L. replied to the topic I wrote a song for ALS Awareness Month in the forum ALS Awareness Month 1 year ago
Creighton,
I lost my dad at his age 89 three years ago. Fortunately for him it was a short passage…only three months from diagnosis until he was at rest.
I follow postings here nearly every day. Yours is one of the most inspiring I’ve seen in a long, long time. From your typing with your toes to writing this wonderful song, I’m amazed.…[Read more]
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Steve L. replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis Information and General Questions 1 year, 3 months ago
Will,
This is the first time I’ve posted a message on this site but I was so taken by your plea for help that I couldn’t not respond. I’ve become involved with ALS after losing my father (age 89) in 2019.
I contacted one of my sources at ALSA (The ALS Association here in the U.S.) and she gave me the following information:
“The UK has a…[Read more]
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Steve L. posted a new activity comment 1 year, 7 months ago
Thanks, Dagmar. I lost my dad in March 2019, just a couple months after he’d been diagnosed with ALS. He was 89 years old when he died.
The most significant part of his illness was our seeing how nobody seemed to know what was going on…his GP and ENT had no clue.
Just by luck I mentiined his situation a nurse and she immediately…[Read more]
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Steve L. became a registered member 1 year, 7 months ago
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Hello Steve,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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Thanks, Dagmar. I lost my dad in March 2019, just a couple months after he’d been diagnosed with ALS. He was 89 years old when he died.
The most significant part of his illness was our seeing how nobody seemed to know what was going on…his GP and ENT had no clue.
Just by luck I mentiined his situation a nurse and she immediately…[Read more]
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I am so sorry you lost your father to ALS. Yes, getting a diagnosis for many is difficult. And so is even having symptoms get noticed in the first place.
You might find this discussion on this forum of interest. It is about a flow chart that non-ALS practioners can use to help detect ALS early…[Read more]
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Hello Steve,
I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with A…[Read more]
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Hello Steve,
I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with A…[Read more]
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I am so sorry you lost your father to ALS. Yes, getting a diagnosis for many is difficult. And so is even having symptoms get noticed in the first place.
You might find this discussion on this forum of interest. It is about a flow chart that non-ALS practioners can use to help detect ALS early…[Read more]