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  • Hello Casey. We are getting a blizzard warning with 40cm of snow expected in the Halifax-Dartmouth area of Nova Scotia. Had my first visit from an OT the other day, lots of recommendations; extra stair rails, bars on the shower tub surround, bar for lifting myself out of bed, walker in near future etc etc.

    Just six months ago, I could walk six km without having to rest too much, now I cannot walk 60 ft. without feeling bushed and cramped up, and with a cane of course. My voice is starting to get raspy, and jaw gets tired when chewing food. Swallowing and choking more often.

    I am getting sluggish and hope things will stabilize a bit, so I can at least get another summer to do some camping. Things are what they are and have to adjust and adapt to this plague of a disease. I tell my friends getting ALS is like winning a lottery of the very worst kind!

    Hope you are having a good day(s) and that all is well as possible for you. TTYL

    Paul
    Hello Casey. I was dx in November 2015. Limb Onset. Been dealing with drop foot R-Leg and it makes it very uncomfortable for getting around. I can still hobble with a single cane, but as my legs continue to weaken, a walker is not far off in the future for me. Still a bit in shock from the dx of ALS.

    I am in Nova Scotia. What part of Canada are you from? Our medical system/wait times are the worst I have ever seen it.

    How long have you been dealing with this terrible disease?

    Paul
    Hi Casey,
    Hope you are doing ok. My family and I went to Dallas to visit my dad over the Columbus Day weekend. It was a very quick trip but a very nice one. My dad can't really use his arms or legs for anything. He can still breathe well, swallow, and talk pretty well. He has to be fed and everything else with complete help. Take care my friend. I pray for you. Kim
    G'day Casey
    I just read that you know lots about Toronto and Niagara Falls. I'm storing that info (probably in the part of my brain where I'll never find it again!) as my husband Wayne and I are planning a small trip with our kids. Maybe next year, more likely 2017. I would love to pick your brain. Ok let's be honest, mainly about ice hockey! But also some awesome things to see that aren't are accessible but not quite so mainstream.
    I hope you are traveling well.
    God bless, Janelle x
    Hi Casey,
    Saw that you had your light on. How are you doing? My dad is hanging in there but he is losing more and more mobility. Luckily, in his situation though he can still eat ok. Even though someone has started to feed him at times and he is able to talk most of the time. They are hooking up his eye gaze thing or whatever you exactly call it this week. They started some training on it awhile ago. The VA has been great to him. Take care, Kim
    Merry Christmas Casey! Haven't see you on for awhile. I'm hoping you are doing ok. Hugs, Kim
    Hi Casey,
    Just stopped in to say Hi! Hope you are doing ok. My dad is anxious to get his mini-van from the VA. They have been so good to him and we are so grateful. My dad is still doing pretty decent for having ALS. He can still speak really well unless he's tired, can still eat, and his breathing is still pretty good. He's also going to be 80 in September so he's not exactly a youngster. So, we are just grateful for the present and take it one day at a time. Take care my friend, Kim
    Hi Casey,
    Glad to read that you are doing reasonably well with this horrid disease. I just wanted to apology for removing you off my friend's list. You were off for a long time and I thought you had quit the forum. My dad is doing pretty good. He is hoping to get out more and drive his PWC around once the weather gets nice. My brother and sister who live in Texas take him to the movies, out to eat, church, and their kids sporting events. They are really good to him and the assistant living facility is just a minute driver from my brother and is very plush. But, also extremely expensive. Luckily, he gets some assistance from the VA. Take care, Kim
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