Hi, Jamie, I have been having speech issues for about 16 months; they've pretty much stalled since last November, so I can still be understood, but have a definite slur. Also saliva and mucus. I've had all the tests, including 2 EMG's (both clear) and no other symptoms. How long did it take from start of symptoms until your diagnosis? Of course, I'm pretty scared!
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Hi Jamie,
How are you doing? Just dropped in to say Hi. Hope you and your family have a Happy Easter. Take care, Kim
I have a barely used wheelchair, a shower seat and a toilet seat if anyone needs them. I live outside Dallas, TXjamie,
I saw that you were bulbar from a post today. I am caregiving my best best friend just diagnosed with bulbar. She says at night she feels a "humming" in her chest- like a cat purring? ever heard/felt anything like that? What are the most helpful things people did for/with you? I love her and her hubby- trying to navigate with them both.
Dawneo
Hi Jamie,
Thinking of you. You are in my prayers. Kim
Hi Jamie,
How are things going for you? We had a nice Christmas Eve with my dad and then I worked at the hospital switchboard on Christmas day. My dad is doing so-so. He still can talk and eat on his own. But, he can't walk unless he has his walker and someone is directly behind him holding onto his gait belt. He is also starting to lose more strength in his arms. The VA finally put in his wheelchair ramp to his front door in this week. We hope to get him out more and take him to the movies and things. But, were being cautious since it's flu season. Take care, Kim
Hi Jamie, I'm sort of new to this forum. I'm a little worried that I may be starting with bulbar ALS. I will be going to the Mayo on Jan. 2. I read that you have bulbar ALS from Greg's thread. I was curious if when you were diagnosed, did they offer you to try the IVIG treatment or anything else to see if you might respond? Or did the signs of bulbar disqualify from the option? Sorry to ask such personal questions, I'm sort of anxious. I hope you are not offended. Lolita
Hi Jamie,
Thinking of you? I'm doing okay. Been having some stomach pain in the pit of my stomach for the last few days. I have been worried lately about dad and about how my son is doing in school. I always have been a worrier. The twins have their first high school exams this week so its kind of stressful at home. My dad is coming over to our home for Christmas Eve so I'm excited about that. Wishing you a Merry Christmas. Take care! You are in my prayers, Kim
My Christmas wish for you and your family is to live in Peace Harmony Laughter and Love and know how Beautiful You shine so bright with your Love and Light! I just want you know how much you mean to me ... we have never met in person, but you are known to me and stay in my heart. I feel we have been friends forever ....
Hi Jamie,
How are things going for you? My dad is currently back at his home now in central Illinois for at least awhile. He got the flu bug the first night he was home. Thank Goodness he is doing much better now. It was so good to see him. I'm trying to come up with things to keep him entertained such as good movies etc. especially with bad weather eventually coming and he won't get out too much. Take care, Kim
Hi Jamiem....we touched bases a few months on a post about Bulpar Palsy. How have you been doing these past few months? I see that your diagnosis was changed from pseudo to ALS. Are you able to get assistance now?
I was wondering if you have ever had an EMG. I had an EMG done on me and it was dirty, however, it's not bad enough to diagnose me with anything MND. I posted it and Wright looked at it, he says that it's inconclusive and he understands why they can't give me a diagnosis yet.
My symptoms remain pretty much the same as back in July/August. My swallowing does get better though. In fact right now I rarely have any swallowing issues. My speech though is another story. I feel that if it keeps deteriorating that, by my birthday this Feb., I will be unintelligible. I have no weakness anywhere except my tongue.
You can read Wright's analysis on my blog.
I'm hoping you are doing at least OK!!!
Take care!!Hi Jamie, I thought about you this moring and justed wanted to say HELLO! Hope your doing well and are in good spirits.. God BlessWas you oxygen level low?Hi Jamiem coul you describe your chest feelin a little more?
Hi Jamie, Had looked forward to meeting you but barb said you were fighting a cold. I hope you feel better soon. I seem to have picked up a bit of a cough since I got here. May be allergies but don't know for sure. We are going to Fairfield tomorrow to visit a cousin. I will be here till the middle of next week or possibly Tuesday. sherry -
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