Thursday, 5 June 2014

It's Personal

Before you read on, beware that I am NOT asking for money or contributions. Betty's Run for ALS is in a few days; it happens this coming Sunday morning. This run raises funds for the ALS Society of Alberta. I thought it would be good to share with you some of the things the society does for me, some of the direct and impactful ways they have helped me through this process, with this disease.

It's important to know the challenges of supporting a group of PALS, a group where you lose about a quarter to a third of your constituents every year, a group where presentation differs so dramatically from person to person, a group where nearly 90% die within five years of diagnosis. This is a support society needing very special, very compassionate, very strong people within it. This is a society needing a very special kind of dedication.

For me, this dedication and compassion showed up almost immediately after I was diagnosed. I was fortunate; Alberta Health Services still had a Case Manager for ALS when I was diagnosed. A couple of days after diagnosis, once the tears and shock had passed, Denise, my AHS Case Manager reached out to me, arranging to come and see me. After an initial assessment visit, she came back, loaded with gear, new toys for me, initially a shower transfer bench and a walker.

Soon afterwards Denise arranged the delivery of a manual wheelchair as well as a power wheelchair, all of this not costing me a penny, provided to me by the ALS Society of Alberta. Were I to have been forced to purchase this equipment, it would have cost me nearly $30,000, an expense I could not have afforded. I asked her about the ALS Society and she said "You are going to meet Jane Rivest. She, along with Sue Monroe at the ALS Clinic, will be your two angels." She was right; Jane is amazing and without her and her team I would have long ago given up.

The other day was another great example. I am headed for Europe in a couple of days and wanted a "FreeWheel" attachment for my wheelchair. It's a large front wheel which will make it easier for me to go over the rough ground and cobbled streets that are an intrinsic part of the European experience. I went into the wheelchair store to order the part and the ALS Society representative was there. He said "You don't have to buy that. We will buy it for you", saving me another $1,000.

The really great part about all this equipment is that it will outlive me. Another Person with ALS will get the freewheel attachment after I no longer need it. Another person, new to the struggles of this illness, will have a walker, a transfer board, a power wheelchair, a manual wheelchair, a shower bench and whatever else they need, long after I am gone. The society is a kind of equipment bank, allowing PALS to spend their money on living well, not on the equipment needed to do so.

It's not just the equipment, soon to include a lift sling system in my bedroom and who knows what else. It's the emotional and moral support as well. The kindness and understanding of the ALS Society team, working to help me through the medical and emotional challenges I face, helping me to plan for the inevitable, for they know what it is. They are there to talk, to listen, to advise, and to care; not just for me, but for the next person whose life is forever changed by these three little letters.

This is why I am supporting Betty's Run. It's personal. It's for me; it's for other PALS. It makes a difference on a one-to-one level. It counts.

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