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  • Hi Kenny,
    Hope you are doing Ok. My father is doing so-so. His breathing is pretty much okay. He does used a bi-pap at night. He can still eat on his home. He can't walk on his own unless someone is directly behind him holding his gait belt. His speech is still pretty decent unless he's tired. But, he can only use a few fingers on each hand and is losing strength in his arms. Dad is coming over to our house for Christmas eve. Merry Christmas and take care of yourself. Kim
    My dad made it home for a quick visit this weekend. He heads back to Dallas tomorrow. He's had so many visitor's that its wearing him out. I'm sure you and your wife are very frightened right now. But, from what I read I truly believe they are going to make a major breakthrough in treating ALS soon. My dad has even let his Dr. take skin samples from him to send overseas. Dad wants to help people in the future with disease even if he doesn't benefit from it himself. That's the kind of dad I have. Always thinking of others first. Hang in there! We are on your team. Kim
    Kenny - Just want to remind you:

    YOU ARE NOT ALONE!

    Hope to hear from you soon - even if it's just a grunt!
    Hi Kenny,

    Just read your thread.

    I really do NOT want to quash your hopes - cuz you never know - but I specifically asked my neuro about Lymes' last week. He had not tested for it and he mentioned that even if it was positive - they would not really give it consideration. I thought that was a strange reply - but it could be the Canadian protocol. I did not pursue it cuz I'm a City gal and do not spend time in the forest - which I think is what you mentioned you do. My training runs were mostly on city trails bordering green spaces. Maybe it's different in the USA- where, as I understand it, Lymes is more prevalent. (guess our cold weather is no friend to ticks). Hang in there. You're a young guy - maybe you can get in on a stem cell trial. Whatever you do - keep optimistic!
    I was sorry to hear about your test results. My dad was diagnosed this spring with ALS after two years of tons of tests trying to find out what was going on with him. But, there have been tremendous breakthroughs in research on ALS lately and there are some clinical trial that will be opening up soon. Things are more promising for a cure then ever before. The people on this forum have been so helpful and kind to me. Welcome aboard but sorry about your need to be here. Kim
    Hey there, Kenwood.

    In my experience, neuros are not very good at giving much in the way of practical advice or referrals during the diagnostic process. If you find yourself wondering how to get something done with the weakness you have, or what kind of equipment might be available, send me a message. For instance, if you have more trouble walking or with your hip (walking weak is not kind to hips, and yours is already replaced), it might help to know they make wheelchairs specifically for use by people with a weak/paralyzed side and a strong side.
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