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Dustin Kassman started the topic Organ donation and ALS in the forum Diagnosis Information and General Questions 6 days, 6 hours ago
Can I still be an organ donor now that I have ALS? I cannot find a definitive answer.
Thanks,
Dustin -
Dustin Kassman replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 1 week, 6 days ago
Don’t wait to get a piece of equipment until you need it because the approval and acquisition process always, always takes longer than expected. And be diligent about checking on its status. Almost every piece of equipment, from wheelchair to Tobii device to seat cushions, has gotten hung up in the process and would have remained stalled if I had…[Read more]
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Dustin Kassman replied to the topic Preventative Care After Being Diagnosed With ALS in the forum Living With ALS 6 months, 3 weeks ago
First, I agree with your observation regarding the poor chance of an effective ALS treatment becoming available soon. Even if a trial uncovered an effective medication tomorrow, it would take years to analyze the trial data, organize the paperwork for the FDA, get FDA approval, and finally turn it into a product, not to mention the process of…[Read more]
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Dustin Kassman replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 1 year ago
Len, my daughter, too, has given me a Storyworth subscription and although she has not included this question, I think that I will add it myself. Thanks for sharing a wonderfully written piece.
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Dustin Kassman replied to the topic Care giver check in in the forum A Forum for ALS Caregivers 1 year, 1 month ago
My cALS is my wife and I hate what this disease has done to her. Not only does she have her tasks, she must now do the things that I used to do, AND take care of me. There are not enough hours in the day for her to do something for herself. As I say, “ALS subtracts years from the life of a person with ALS, but adds years to the age of a family caregiver.”
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Dustin Kassman replied to the topic ALS and falls in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 3 months ago
I started with a cane and then moved to a rollator, which is a wheeled walker, as my balance deteriorated. I also wear an ankle brace due to foot drop. It is important that when someone is assisting you while you walk that they know the proper techniques for spotting you. Your occupational therapist can train you and your assistant.
I found this…[Read more]
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Dustin Kassman replied to the topic You're Not You in the forum ALS In The Media 1 year, 3 months ago
I have not watched “You’re Not You”, but I have put it on my list. One ALS-featured movie that resonated with me was “Blackbird” with Susan Sarandon.
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Dustin Kassman replied to the topic Applying for disability and medicare in the forum Living With ALS 1 year, 5 months ago
I completed the process of applying for SSDI and long term disability (LTD) insurance last year. Here are the highlights:
– You will automatically qualify for SSDI and Medicare based on your ALS diagnosis.
– While it may take several weeks (mine took 6), both will be retroactive back to your application date.
– The amount you receive for SSDI…[Read more] -
Dustin Kassman became a registered member 1 year, 5 months ago
Hello Dustin,
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]
Hello Dustin,
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]