AKjo
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  • jo thank you for reaching out to me. I can no longer speak as I have bulbar onset. also my hands and legs are growing weaker. I am going to Portland for gall bladder surgery and then visit my sister in Arizona for three weeks. then on march 19 I go back to Als clinic in Portland. I also go to the Portland VA. my daughter and husband are my current caregivers. but she would love for you to talk with someone that is familiar with ALS. jill
    Just want to wish you a merry Christmas and happy new year...You are an inspiration to me and so many here!
    Hi Jo,
    Just wanted to stop by and wish you Merry Christmas. It sure is sneaking up on us fast. I am still trying to arrange to get to Dallas, Texas to see my dad in January for a few days. He is tolerating the drug Acthar well but we really don't know if it is helping or not. Take care, Kim
    Hi Jo,
    How are things going for you and your hubby? My dad is currently staying steady for the time being. He is participating in a clinical trial of the drug Acthar. He will be getting two injections per week. Only 40 people in the U.S. I think if dad were younger he would have fought hard to get into the stem cell thing. Take care, Kim
    Hi Jo,
    How are things going for you? I'm doing ok but miss my dad alot. We couldn't find any good quality caregivers for him so he moved to Dallas to be near my brother and sister. He is currently living in a facility similiar to a assistant living facility but with 24/7 care. He seems to like it pretty well so far. If it doesn't work out my brother is going to remodel his house so dad can move in with them and they would get him someone 24/7 to help with his care. Do you have someone who helps you with your husband? Take care, Kim
    We have a canadian cycle team too (out west)... ALS Cycle for Hope. It would be très cool if the two groups could meet...
    Hi Jo,
    How is everything going with you? I live in a small town in Central Illinois. I am going to have groundhog stew if we get the snow that is predicted to start at midnite tonite. I am so ready for spring so we can get my dad out more. My dad watches movies on Netflix alot to kill the time. He also likes to watch all the college basketball games that are on. I will probally dye Easter eggs with our youngest son in a few days. I think the twins who are fifteen actually have just as fun doing it as he does but they won't admit it ever. Hope you have a nice Easter. Drop in on the Cup of Tea forum on here. We need more forum members to share on there. Take care, Kim
    Hi Jo,
    How are things going for you? My dad is doing so-so I'd say. With this disease it's hard to gauge at times. He could be a whole lot better but at the same time be a whole lot worse. But, my dad isn't as young as some being 78. Dad is still able to eat on his own but slowly. His arms are very weak and he has very limited use of his fingers since they are now curved under. He can take a few steps while using a walker and somebody strong directly behind him holding firmly to his gait belt. His lung capacity is pretty good so he is at this time not using his bi-pap. He drinks Boost at least once a day. We are anxious for spring to get hear so we can get dad out in some fresh air for a little while. Take care and feel free to drop a note anytime. Kim
    I am sorry AKjo, I am new to this forum & couldn't understand that an account can be active when someone passes away. I will check it up carefully from now on.
    Jo, just a word of caution re Virginia Mason. Wheelchairs don't seem to be their ALS clinic's strong suit. I would get whatever expertise you can in AK and since you live so far away, deal with the vendor via the hospital there. If there is not an ALS clinic, an MS clinic, stroke and/or spinal cord clinic can be fine. It sounds like that's the direction you're heading anyway, but just chiming in based on experience.
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