Drummer if you are interested there is an alphabet made for ALS using eye movements. It can help you both with communication if he loses his ability to speak. Google Jason Becker (guitarist) and his dad Gary to find out more info on it.
Location: A simple man leading a complicated life....
Exp:
Renowned journalist Ted Koppel conducted a series of interviews with former Sociology professor Morrie Schwartz during the last year of his life after being diagnosed with ALS (Lou Gehrig's Disease). This series is among the most requested and widely discussed Nightline series of the last 25 years. Watching the night they aired was Schwartz's former student and sportswriter Mitch Albom who was then inspired to reconnect with his former professor and write the best-selling book Tuesdays With Morrie.
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Tonight my parents and sister flew back home to Winnipeg. It was a bitter sweet day knowing that it was the last time my father will be in Calgary. Still so hard to believe this is happening. He looks "fine" today.
My sister knows something is wrong. They will break the news to her very soon. I gave them my iPad so we can FaceTime often until I'm there in person.
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Tonight my wife and myself went to her parents house (her 20 year old brother also lives at home with them) and told them what's going on. Feel great for doing it. We are close to them so they will probably be an emotional help for me. They live in Calgary.
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As much as it's painful to talk about it, it's going to be a relief to get things out in the open with all the people you know and love, particularly with your sister.
It won't be easy. Hope it goes as well as possible.
Thought I'd give an update to everyone here.
FaceTime is a very good tool. I use it to talk with my mom, dad, and sister almost daily, since they are in Winnipeg.
My sister is doing the day to day support of my dad (and mom as well) until he gets too sick to live at home. She's being very strong!
I'm doing the back end support, long term support, arranging things like wills, funeral prep, power of attorney, arranging meetings with the ALS Society of MB, assisting in telling family, helping plan out the budget for when my dad's income switches to long term disability etc.
My life has changed so much in the last month or so it's crazy. I'm 34 years old and I think this is what will make me progress into "adulthood". I hear a lot of people go into adulthood when they have children or something similar. I don't have any kids so didn't have any major life changing events to push me into "adulthood" until now. That make sense to anyone?
I'm glad I made this thread. I've had a few private messages from members on this forum of support (For example, they are a doctor and if I have questions I can ask).
Someone even sent me a private message saying they just found out their father has ALS so I'm not alone in this fight.
Hats off to the Calgary Puck community!
In a few more days I'm flying to Winnipeg for a bit. Going to go fishing with my dad - he loves to do this and I've never been fishing with him out there before.
His right hand has shut down and left hand is quickly shutting down.
When I'm in town I'm also going to do some housekeeping like budget planning with my family, take them to a lawyer to do the wills, have a sit down meeting with the ALS people in Winnipeg to get the support rolling in, and meet with other family members that live there.
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Just got home from visiting them in Winnipeg. Had a lady from the ALS society come over and talk to us about what happens next. That really helped. On this trip I took him to the Winnipeg Zoo (10 polar bears there), day trip to Grand Forks USA, and tons of family time. It was lots of fun. My dad fell one night when I was in the room and wasn't able to use his hands/arms to stop his fall, so he face planted. Luckily it happened on the carpet and he wasn't injured but I'm really worried it's going to happen again and it won't be on carpet.
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