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  • Hi Tillie! A couple of months ago I recall seeing a post from someone referencing a book you had written. I believe it was the journey you and your husband took through the ALS process. Could you provide with the name of the book -- I would like to order a copy. Hope you are doing well and enjoying your weekend. Best, Bill
    Thank you for your response Tillie. As I said I am not trying to be redundant or a nuisance. I can't imagine the amount of tolerance and patience you have with us wondering about this disease. I'm don't know that this fits in the envelope of an MND but there has been a fairly sudden and rapid progression very much so compared to where I was upon my initial message. Just looking for any thoughts as I know you all come across many others who stumble upon other possible avenues.
    Such an incredible gesture naming the joey after Neil. It warms my heart to see how the Koala's uplift the PALS. I am sure Neil is soaring above your trees and pointing out Glory and joey Neil to Max and all the other PALS. Thank you Tillie for being you.
    Hey tillie, could ya help me post multiple pics @ a time ? I forgot how to do it want to show whitewater trip to the clan.
    If a pm me I 'll be looking. Thanks love ya chally
    Thank you for your answer. But will a neurologist see bulbar before unclean speaking? Is the EMG clean and do they have hyperreflexes? I cough the whole night since one week.. .
    hello you nice person :) i hope you are fine! you wrote, that your husband were diagnosted with bulbar. how can a doctor diagnose bulbar? can you see something on the emg or on the reflexes? i have tough slime in my trought for more than a week now, my voice sounds a little bit scratchy and i have a dry cough turning the night ..and my muscles twiches...i know, you wrote this is no bulbar symptom. i would be happy, if you write me back. greets from austria ( and sorry for my bad englisch)
    Tillie,
    Just read a post that you posted about the duration of your's and Chris' suffering. I think you mentioned 11mos. Is that common for ALS/FTD? I know from what I have read so far that it has a more rapid projectory but jeeeshhh...is it that rapid??? commonly???
    Thank You, Thank You....a hundred x's Thank You. I am so sorry that you had to be a trail-blazer through this horrid terrain but thank you once again, for mapping it out for those that will follow . My Jim seems to be rapidly progressing. His diagnosis was in January. He already has his feeding tube and his speech, swallowing, coughing, clearing his throat, hands becoming immobile, communication becoming more difficult by the day. But he too remains upright and able to walk. I am reading all your sources and every thing makes perfect sense to me now. This has been going on for quite some time now...Longer than the ALS symptoms. So which comes 1st? The FTD or the ALS? And if the FTD symptoms emerged 1st, I will continue to link to your resources to try and figure it out. Our paths seem so similar. My gratitude for you sharing is immense , Pam
    I really appreciate you even writing to me. I want to let you know that. Even the fact that you noticed I have been on. I do not understand why my muscles are disappearing and it is scary. And the trouble breathing is even scarier. But I am doing my best. I just am losing functionality and I cannot even pick up my son. Its sad. I usually am on here when they are sleeping. But thanks for writing to me.
    I know. But I have lost muscle in my foot to the point were it is deformed and my arm, shoulder and calf as well. My GP was actually shocked when he saw me again. Everyone thought this was in my head but the atrophy is very very visable at this point. I can't use my right foot at all. Now twitching started in my left side and I am concerned. I am not sure what is happening but the trouble breathing is stressing me. My body is giving up
    Hello, you've replied to my first post on here, I have one question not to be rude or bother you; but I'm curious. Does atrophy with ALS start as a dent or the complete wasting or a muscle. I know that the atrophy comes after paralysis, I'm just wondering how that part works when it actually atrophies.
    Hi Tillie
    Dave has been in touch, he is having such a rough time. I will keep in contact with him and have passed on that you are thinking of him.
    Wendy x
    thank you so much for response. Can I ask another question on what I am experiencing? By message like this or would you rather I post it inforum..If I am bothering i will not ..I just have a few other questions would like your thoughts
    thank you Jim
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