[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 not followed up.

[Dustin Kassman]

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 getting insurance companies to agree to pay for it. The sad truth is, the people who will benefit from a successful trial haven’t even been diagnosed with ALS yet.  ( Nevertheless, this did not stop me from doing my part by participating in several studies.)

 

As to preventative care, I continue with regular teeth cleaning.

Dustin Kassman

[Dustin Kassman]

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.”

[Dustin Kassman]

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 list in my reference notes:

Progressions of mobility
– May or may not need assistive devices at some point
+ Canes, walking sticks, wheeled walkers, legged walkers, lightweight transfer chair
+ Upright walkers may not be covered by insurance
+ Braces for ankle weakness/drop foot

Wheelchairs
– Having a wheelchair doesn’t automatically mean you have to use it continuously (you can use it to help conserve those “energy dollars”)
– Insurance will only pay for one wheelchair
– A tilt feature is important so you can take pressure off of your bottom
– Team Gleason will pay for a lift accessory that will raise the seat so you can talk to people face-to-face. They will also pay for attendant’s controls that are mounted on the back of the chair.
– Recommend getting wheelchair before you absolutely need it (gives you time to get used to operating it
– Most loan closets have power wheelchairs that you can borrow to try out or use short term if you are traveling.
– I use a lightweight transfer chair when traveling.

[Dustin Kassman]

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.

[Dustin Kassman]

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 will be approximately the same as if you worked until normal retirement age. If you create an account on http://www.ssa.gov it will show you your estimated SSDI amount.
– My LTD policy had a 90 day waiting period before it went into effect. If you have a short term disability policy it will cover this period; my employer did not offer such coverage.
– The amount that you get from LTD will be the amount stated in your policy MINUS what you receive from SSDI. Your LTD policy will require that you apply for SSDI.
– Your SSDI payments are taxable.
– Your LTD portion is non-taxable IF you paid for the policy yourself, otherwise it is taxable if your employer paid the premiums.

[Dustin Kassman]

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.