A.L.S. Support for Daniel McCoy

Imagine...

You're finally finding a flow in life again where things are working toward your favor and those dreams you've been working so hard for seem nearly within your grasp. Another year or two and you'll really be able to dedicate the last 20 years of your life to being of service in the world, and leaving a meaningful impact on your community... When all of the sudden, you've been given a life altering diagnosis of Amyotrophic Lateral Sclerosis, and your prognosis is 12 months.


How do you plan for the future? Especially when you still have to work a full time job, find a new place to live, make difficult end-of-life decisions, navigate new medical treatments, therapies and medications, complete lingering projects, and release attachments to old belongings, dreams and expectations, This type of news is devastating to anyone... 


This news has been devastating to us, as it's the news and story of our dear friend, Dhanapati / Daniel McCoy. He has been given an ALS diagnosis which has shortened his life expectancy from the 90-ish years of existence on this earth, for which he had hoped, to less than 12 months. 


And we are collectively, humbly, asking for your help to support Daniel in the efforts of making his life more comfortable in his final months so he can conclude his journey with dignity, peace and joy. 


There are many unexpected needs and expenses that have arisen for Daniel since this diagnosis, and more he'll need support with moving forward, including what he will do when he's no longer able to actively work for his living. 


Your support with this Go-Fund-Me will help with short term and long term needs like: 


Nutritional supplements/medications

Caretaking/nursing support 

Physical therapy/massage therapy 

Medical appointments

Transportation

Housing support/rent 

Groceries/household costs

Palliative/Hospice care 

End-of-Life services of his choice


If you would like to provide any non-monetary support to Daniel let us know in the comments or a private message and we'll get back to you. 


Here's an excerpt from Daniel's letter to his loved ones/community...

"The median rate of decline for an ALS patient with my age, date and type of onset would set my most likely time of death at 12 months from now. My survival might be shorter, depending on the extent of life sustaining interventions I elect to accept and can afford. I'm not inclined to have medical apparatus installed and drugs induced to govern all my body functions indefinitely. Further, the trajectory of my decline doesn't look good for me. With all my background in yoga, health education and athletics, I thought I would probably live another 20 years, but alas, it's not to be.

For now, I'm grappling with the emotional, physical and practical overwhelm of navigating my circumstances. I have a lot that needs to be done and a lot that cannot be fulfilled within my remaining months, especially now that body care takes so much extra time. I continue to have a hard time retaining muscle tissue and breathing capacity. I will need increasing physical aid. I currently continue to work full time. I might be able to maintain marginal income from that for a few more months. I don't know what will become of me after that's gone."

------The whole message in it's entirety------

My news is unfavorable. I hesitate to transparently broadcast my travail to so many friends, particularly because I cannot foresee the impact of my words. I apologize that it might seem less than friendly to simply announce it here, but it's not practical for me to call each of you individually and immediately.

Alright, here it is. Eleven weeks ago, I was diagnosed as having ALS and by now, it's certain. I've foreclosed any denial within me. Yes, amyotrophic lateral sclerosis.

A year ago, after refereeing 20 games in a weekend hockey tournament (which was quite a feat), my body didn't properly recover and I began to lose more and more muscle mass. As my motor neurons die off, my muscles weaken and atrophy. When I last checked, I had lost 16 pounds of muscle. Picturing that as a big stack of lean steaks, that's a lot. I move more towards paralysis each week.

I've begun to lose control of my mouth and throat area. Those are called "bulbar" symptoms. I have increasing difficulty in speaking, chewing and swallowing. There's now some tendency to aspirate liquids and food particles into my lungs, which is dangerous and can lead to pneumonia. It's hard to ingest enough calories. My lips and tongue stay numb.

I became a tired, weak, frail, disabled old man while in isolation this year, and I'm not used to that circumstance. My speech is increasingly impaired. At some point before long, I will mumble so badly and that my voice will be unintelligible. Anyone who might want to talk with me would do well to call me sooner rather than later. I'd love to hear from you in any manner.

As you may know, there is no known cause and no known cure. There are no therapeutics that will significantly slow my progressive degeneration other than suitable nutrition and exercise / physiotherapy. Almost all ALS patients are in some drug trial or another but it's largely been a "stab in the dark" to find the mechanisms of disease out of numerous possibilities that have emerged. Scientific knowledge about motor neurons has greatly increased, but not enough. There are a few newly developed drugs of questionable efficacy but it appears that the FDA will not expedite their trials and review in time for me to potentially benefit.

My physiotherapy is "tough sledding". Sometimes I exercise for ten minutes, cry for five, exercise for ten more, cry further and so forth. I start off tired, it tires me further and I'm forced to face the horror of a body that's progressively and pathetically weakened.

Do not imagine that it is all gloom for me though. Although I'm tremendously challenged, I see perfect karma and many blessings in my predicament. I wouldn't recommend it, but having a progressively degenerative disease has generated a great impetus toward both self-awareness and Self-awareness. I'm in an accelerated curriculum to learn dispassion, avoiding all false identification and clinging. I've needed to let go of being so damn independent in the world and I'm learning how to receive and surrender. Priorities are altered. Relationships more urgently matter to me. I'm still here, so there must be more for me to do. I intend to go back to projects that are dear to my heart that I believe could be of significant contribution. I want to serve as best I can, while I can. Also too, sweet moments are all the more savored. I see grace in everything.

The median rate of decline for an ALS patient with my age, date and type of onset would set my most likely time of death at 12 months from now. My survival might be shorter, depending on the extent of life sustaining interventions I elect to accept and can afford. I'm not inclined to have medical apparatus installed and drugs induced to govern all my body functions indefinitely. Further, the trajectory of my decline doesn't look good for me. With all my background in yoga, health education and athletics, I thought I would probably live another 20 years, but alas, it's not to be.

For now, I'm grappling with the emotional, physical and practical overwhelm of navigating my circumstances. I have a lot that needs to be done and a lot that cannot be fulfilled within my remaining months, especially now that body care takes so much extra time. I continue to have a hard time retaining muscle tissue and breathing capacity. I will need increasing physical aid. I currently continue to work full time. I might be able to maintain marginal income from that for a few more months. I don't know what will become of me after that's gone.

I've been given strong encouragement to gear down prior preoccupations and obligations, so that I can focus on more meaningful and enjoyable aspects of life that, I mourn, have long been neglected or postponed. I'm attempting to close out old business, so that I can be more on purpose. Ideally, my remaining time in this life will be unhurried and will feel spacious, peaceful and caring. I'm looking forward to having time to sustain my body, meditate and connect in love. I'm wanting to renew and enrich my connection with you. I would welcome support from any of you in your own way. I wish you all a happy new year!

Donations

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  • Matthew Kievlan 
    • $50 
    • 1 d
  • Miranda Rudegeair 
    • $20 
    • 2 d
  • Noelle Davis 
    • $25 
    • 2 d
  • Christopher Paul Baker 
    • $100 
    • 3 d
  • Jesse French 
    • $100 
    • 3 d
See all

Organizer

Brave Legend Pietri 
Organizer
Austin, TX
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