Dustin Kassman

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]

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]

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.

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.”

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]

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.

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]