Richard has ALS & needs a caregiver
April 22 - UPDATE: I have reduced the goal to just $10k, as we now have a van and more carefully considered funding requirements. Of course, every bit helps, and I ask you to re-share this with your social networks. The caregiver need has not changed; it's gotten even more important in the last couple of months!!
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March 24 - UPDATE: we now have a wheelchair-conversion van! We were able to work out a way to borrow what is needed - that now mean Richard will be able to travel more - for errands, days out and most thankfully, family travels to see his grand-kids!
It's not free & clear funding, however - we still need to rely on some donations in order to ensure everything works out for all parties.
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This is Richard. Richard has ALS:
**He's the one with the glasses...
You probably don't know the full name of ALS - Amyotrophic Lateral Sclerosis - but you may also know it as Lou Gehrig's Disease. You've almost certainly heard of the Ice Bucket Challenge, right (that's Richard in blue, and me in black):
And you know who Steven Hawking was (died March 14, 2018)?
Well, that's ALS. Hawking was diagnosed in 1963, and given 2 years to live. He made it almost 53 years longer than that! But as a theoretical brilliant physicist & cosmologist, he had the kind of support (financial, especially) that allowed him to live fully through those extra years. Richard does not.
Back in 2012, Richard was diagnosed with ALS, and told he had about 3 years to live.
This is a typical life expectancy from the point of diagnosis - some will pass sooner, some will last longer, but it is almost inevitable that the ALS will take you before old age does.
ALS doesn't affect the mind; it affects the body, degrading muscles, making them less & less strong, until they are useless and the patient's whole body is restricted & they can no longer move, speak or even breathe, without medical assistance.
You become trapped in your own body, and there's nothing you can do about it.
It's common for an able-bodied person to find themselves needing a wheelchair within 6 months of diagnosis; and within the first year, to simply have no more ability to stand.
So when you get this diagnosis, you need to live life to the fullest - as best you can - while you're able to.
With a 3-year diagnosis, Richard enjoyed the time he expected to have left, while planning for his 'expiry date'.
He's battled Daleks:
He's been to the North Pole... (well, actually, this is Kansas City... but still... a giant penguin, wow!!):
He visited the Spruce Goose:
We even travelled to the UK last summer, which turned out to be the last trip he would take until he could find a caregiver to travel with him:
He's been interviewed about ALS & spoken frankly, to help all understand it better (8-minute video):
...AND thanks to the hand controls he got installed in his truck, he's got a World Record (well, quite unofficially):
He still visits friends & family, but ALS has made it more & more difficult:
He's still here, fighting it as best he can, but as you may guess, having lasted a couple of years longer than expected, he must live on a pretty strict budget these days. He didn't expect to still be here, so he has had to make a number of adjustments in what remains of his life.
In many ways, Richard is a very fortunate man.
He's lived a good life in his 62 years.
He still has his mother, brothers, kids & grand-kids & lots of friends, but circumstances have him living in Calgary (Alberta, Canada), with most of his family in Vancouver (British Columbia) - a full day's drive away. That drive was (and still is) one of his favourite things - from the plains, through the Rocky Mountains & out to the Pacific Ocean - and as a life-long sailor, it still thrills him to make that drive & see the water he has spent so much time on.
He loves a good road trip - don't we all - but for Richard, a good road trip means crossing through multiple countries, not just cities... and taking weeks, not days, to do so, to soak in the sights & sounds, to see the landmarks, the architecture, and (thanks to my input) even the World's Biggest Campbell's Soup Can and other fun & funky little things in out-of-the-way places.
Well, ALS has said "no more, buddy!" and that's why we're here.
I've travelled with Richard numerous times, for a day, a weekend, and 1, 2 and even 3 weeks, over the past few years, and have had to watch the deterioration of his body because of this disease.
He has reached a point where he must have a personal caregiver with him - at home and on any future travels.
What next?!?
Government assistance is able to provide the bare-bones basic funding need for a live-in caregiver. That's good, but we need just a bit more to make things more comfortable for all involved.
Roughly $500/month will be needed to accomodate the full cost of a live-in caregiver and allow him a little more freedom.
$10,001 may seem a high amount, but it is a realistic need for the remainder of Richard's time with us (it could be a couple of months, or the rest of the year, or with some luck, a bit longer than that).
The $10,000 goal should be sufficient to cover his home-care costs for the remainder of his life, and bridge any gaps in the overall cost of the van.
Remember, his health is degenerating, and more & more care will be needed - that means more cost.
Why the $1? Because Richard doesn't fit most molds, so why should this campaign?
Please give what you can - "my small donation won't help much"? Well, a thousand $10 donations could be the difference between dignified, independent living, and hospice care which, it saddens me to say, he would simply not survive in.
What if we raise more than he will eventually need? Any un-used funds will go to the ALS Society of Alberta, an organization that has helped Richard out tremendously over the past 5 years.
On Tuesday, May 15, 2018, Richard will have survived 2,000 days of ALS. I would love to see this financial goal reached as a numerical marker of his struggles (and successes) while battling this terrible disease.
On his blog, you can read his daily posts - the trials & tribulations of 5 years+ living with ALS. The highs, the lows, and the strength of will that makes me proud to be his friend.
If you can't give, please spread the word. Richard is no stranger to social media, so share it with your friends!
Facebook - https://www.facebook.com/richard.mcbride.313
Twitter - https://twitter.com/rmcbridetweets
For the best detailed view of living with ALS, read his daily blog - http://richardislivingwithals.blogspot.ca/
-David