jellis86
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  • thank you for that message jellis, particularly since typing is difficult now, it means even more to me.

    Katrina
    Hi jellis, is there any way to PM you? I have been reading you previous threads and alot sounds familiar. Thanks
    I'd love to send it to you. Just received some more unopened supplies from my sister in law. Send me your email and do you by chance have paypal? It looks like you live in Wisconsin? I got it from a girl in Canada. ALS is all around. Hope they find a cure in my lifetime. My brother was a firefighter for many years. No other health issues. thanks for your kind comments. I'd like to hear more about you.........beverly
    Hey can I ask you a question. Since some of your symptoms are like mine. Lately I notice and people are noticing that my speech is getting better and staying easier to understand for longer. A couple months ago if I ate a meal I would be very hard to understand after (and of course no talking during the meal) and the muscle under my tongue would be tight and feel like a pumped up bicep. Now I notice that I am or seem to be easier to understand, can talk faster and for longer without the tight feeling. And today I had lunch with some friends then afterwards was outside talking to them and one said 2 months ago she could not understand me after I ate. Is that just that I am getting better at using what I have left? the rest is the same.. still benching 300 plus and actually made some gains on arms and legs and back. thanks.. how are you doing? Lee
    hi... I need to talk to someone.... it is another month before the emg.
    Can I ask you a question... my voice will go from not being able to be understood if I am angry, nervous or upset to very understandable ...just a little nasaly and maybe a little slow if I am calm. If I am not worried about being understood my voice will get very good. I was at the swallowing clinic as per doctors orders.. have no issues swallowing or drinking..just harder to move food around in my mouth as tongue is slow and not as responsive. The therapist there noted that as I was speaking with her my voice was hard to understand then went to very easy to understand.. like she said I had a nasal sound but everything else was good as I relaxed with her. We spoke for about an hour. Other than that all strength, and aerobics are getting stronger now that I am back at the gym. Any idea why my voice jumps around so much from hour to hour and day to day?
    thanks
    Lee
    Thanks..it is the not knowing that is stressful. Thanks for your help. It is strange as I never had any twitching until I became worried that I may have bulbar als. Today after I worked out then went for a hard hour plus bike ride I came back and ate and felt great... the twitching was still there is my shoulders, neck and triceps, biceps. As far as I can tell I do not think I have lost any strength whatsoever. I still bench 300,, actually did more today. And the bike ride I got at it so hard up one of the steep hills I was heaving (heart rate and breathing way up).. soon as I got on flat ground I recovered immediately. Half my tongue is now electric after the work out... used to be just the tip. It is slowly fading back to 1/3 of the tongue. It is so weird how my speak can go from very nasaly and hard to understand to slightly nasaly and easy to understand in half an hour or so. It is the not knowing that is ruining me.. I can't seem to shake the worry.
    thanks so much
    Lee
    Hi there. I'm sorry to see the feeding tube is causing you discomfort. I hope you get used to it soon. I think it was very courageous of you to have it fitted before you needed it. Are you using it yet or still managing to consume enough regular food? Interestingly my husband's progression sounds very similar to yours in that his only other weakness is in his left hand/fingers. Unfortunately he is left handed, but at this stage he is managing to use it as usual. His speech continues to deteriorate although he is still eating normally. He seems to be in a place of acceptance and manages to stay positive by focussing on the here and now. I am doing the same which seems to be working for our family unit (we have two teenage daughters). I hope this message finds you well.
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