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It's October 2014, Dad looks tired and off. He says he's fine of course. November comes, he has a fall that is alarming and he's very unbalanced - we take him to the ER. We were told it was the flu and sent home... that happens again and the ER says viral this time. Family doc says depression/vertigo. Meanwhile, we are all very upset at Dad's decline in health knowing full well it's not the flu, not viral and not depression/vertigo at this point.
It's December now, the hospital takes us more seriously and can see our frustration. It was over Christmas and needless to say we were not pleased with Lakeridge Health Oshawa Hospital. We were told it was a brain stem stroke and advised we shouldn't see anymore decline in health.
You guessed it, Dad's health kept declining! We had enough with Oshawa Hospital so we took him into Sunnybrook where he was diagnosed January 2015 by their neurology team in about 12 hours. It was devastating to say the least but now we knew. Those three letters you never expect to hear in your family. ALS. It is a fatal disease with no cure (though we still remain hopeful). They do not know what causes it yet. The Ice Bucket Challenge last summer raised a bunch of money that is being used for reasearch. Not seeing much go to the patients from what we are hearing.
ALS stands for Amyotrophic lateral sclerosis, it's a rapidly progressive neurological disease that attacks the neurons responsible for controlling voluntary muscles such as the arms, legs and face. ALS may not directly cause pain but when the neurons die the muscles do not get their signals anymore. This causes atrophy, spasms, cramping and swelling leaving extreme muscle and nerve pain at times.
Our Father Allan, has a very aggressive form of sporadic ALS. Everyone who has ALS is affected differently. On average someone with sporadic ALS is given a life expectancy of 2-5 years. It's now 5 months after diagnosis and Dad can no longer walk, he can no longer use his arms, and it's also affecting is breathing and swallowing already too. HIs breathing has gone from 95% down to 46%. This disease is like being on a freight train with no breaks, us all inside getting thrown around every which way, not knowing what the next day will even be like.
One of the hardest things in life is to watch a loved one's body betray them to the death while their mind stays perfectly in tact. We want our Father to be able to be outside again, to enjoy the simple pleasures like feel the sun and wind, see what's changed in the neighbourhood. Most of all to be outside watching his grandkids play. It is simply not safe getting Dad outside without the proper medical devices to assist us. We have gotten him outside but it's not pretty and usually at the expense of hurting Dad.
They were denied funding for a deck/lift assist to get him out of the house yet neither of them are able to work. Mom is Dad's caregiver and Dad simply can not work. Dad deserves to be outside too!!!
With this fundraiser we hope to help Mom and Dad with the finances ALS requires.
ALS Canada has been helpful but they only have what is in their 'closet' to give. We are grateful for that 'closet' and will donate everything we purchase that is reusable back <3
Fundraiser money for Dad would be used on:
- a motorized in front and back, full tilting, head supporting wheelchair costing upwards of $20,000 - 30,000. Government covers 75% and ALS Canada may possibly cover a portion but that still leaves anywhere from $5,000 - $9,000. Hoping ADP will cover it all. Currently only have a travel wheelchair that is not comfortable and does not support his head.
- We are going with a platform lift that has been quoted at $6,000. So far funding has been denied for this. At first told we could get $3,000 covered but then told no. We have the wood for the deck already.
- the driveway is very bumpy and falling apart, he/we can not drive/push a wheelchair on it without dumping dad or making him uncomfortable. There is no funding for this.
- we would like to modify the bathroom on the main level to accommodate a way to wash dad. Their is no shower on the main level. Dad lives on the main level now. Denied funding. Also, a new shower commode to fit Dad's needs, the one he has now does not fit him well.
- any other medical costs that arise and as much as it pains us to say, funeral costs.
Here is what the front of the house looks like where the deck and lift will go. Second picture is a close-up of the driveway.
Please, helps us help our Father Allan make the best of the time he has. Dad deserves to be outside too!! Thank you for reading, thank you for sharing, thank you for donating.
Much love to you all <3
The Kids and Grandkids xoxo
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