I was diagnosed in June with ALS, a debilitating disease that affects nerve cells in the brain and spinal cord. Because there isn’t currently a cure, the disease may cause me to eventually be totally paralyzed, and it will definitely lead to my death.
The recent ALS Ice Bucket Challenge was heartening – thank you to every single one of you who donated to the ALS cause and shed light on my disease. It would be great if a new treatment were discovered soon, although for now, I’m just hoping that doctors and researchers come up with a way to at least slow it down.
Every day I wake up wondering if I will lose my mobility. I check my fingers, arms and legs. I walk on my heels and toes to see if the predicted foot drop will soon happen. Every ache and pain I feel I associate with this disease. I get muscle cramps from holding my phone too long.
I try to breathe and concentrate on being present. I smile and laugh as much as possible, as I won’t be able to do these things for much longer. In fact, if the muscles that control my tongue continue to waste away as they have been, I not only won’t be able to smile, but I will most likely be mute by the spring of 2015. Imagine, losing your ability to speak?
My friends are providing me with a lot of help. So are the people at MAC Angels, an organization dedicated to helping people with ALS both financially and emotionally. Doctors and social workers have also been supportive (although the news is never good). Sadly, there are some key people I don't have: both my parents died many years ago. I’ve never married (but am always looking for that special someone, even now!), and I don’t have children.
So, folks, this is the part where I turn to you. If a lot of people can donate just a little, I can cover many of the expenses that I’m looking at. As a dog walker, I don’t have a lot of savings to pay for my own care. Medicare will cover some of the costs, but so many of my needs won’t be covered. Here’s what I’m looking at in the coming months and years:
A PLACE I CAN LIVE IN
I need to relocate to a place that has a handicapped entrance and no stairs, and that is American with Disabilities Act (ADA) compliant so I can get around inside.
To get this new place, I will need a security deposit, and first and last month's rent. A home that I can live in with this disease is critical. Contending with my current home makes things more difficult already.
Medicare doesn’t pay for moving. I estimate that this will cost between $7,500 - $10,000.
I will also need help with monthly rent which will not be covered by Medicare.
I hope to remain at home for as long as possible, but I may eventually need to move into a nursing facility. As my health declines, 24-hour caregiving will be the necessary reality. Home care is not covered by Medicare, and only a limited number of days are covered in a nursing facility.
My out-of pocket expenses will cost $175,000 to $255,000 annually.
A motorized wheelchair will be absolutely necessary. Medicare will cover a portion of the expense, but I will be responsible for coming up with roughly $7,000.
Medicare doesn’t cover the sort of specialized transportation I will require. Each trip will cost me $200.
Although I live simply –my main interests are music, being with friends, and quiet time—I do have some ongoing living expenses. Due to my illness, unexpected things can arise, as well. This can range, and hopefully will not cost more than $500 per month.
THE BIG PICTURE AND TOTAL COST
All these costs come to about $500,000 for my remaining years.
Yep, that’s a big number …and any contribution – big or small – will help me live the remainder of my days with dignity and care. If you don’t currently have anything to spare, please share this page with your networks (also on Twitter at @johnhicksALS )and leave a comment below for me to read. I feel pretty alone with all of this, and I can’t tell you enough how much it means when people reach out with kind words.
- Zac Lux
- Joseph Caserto
- Colleen Sheldon
- Ingrid vd Sanden
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