affected

Thank you tillie again I'm sorry for your loss and everything how long has he been gone now?

Hello tillie first off I want to say thank you for your responses I'm grateful for that and also I'm very sorry for the loss of your husband. I seen in a post where you mentioned your husband making a hmmmm sound when breathing out kinda of like a humming noise? I make the exact same sound at night I've woke myself up its been so loud... I found that post by typing in the search bar at the top humming sound when breathing.My speech is also getting worse everyday I fear this may be bulbar onset..

Hi, I just wanted to say goodbye while I still could. I saw that Max passed and I think deep down I always knew I'd go soon after. Been having lots of choking spells/ breathing problems lately. Even with the bipap, the hospice dr and nurses give me a few months at best. They know their jobs and can tell. We talked today about how to do it, I take off the mask, they give me morphine to make me sleep. That's the last I'll know.
Sure hope there's something after.
You've been so wonderful, you, Mike, skipper and the others. Please say goodbye for me, and take care of my tree.
I've asked my wife to post in the memorial section when it's time.
Thank you again for everything. You guys make a dismal life a little less so.
I hope all you CALS find healing with tine.

Best always,

Neil

THanks for the reply, I figured out how to post, I think was my computer, now to go find out what it could be

hi there, I don't think I have the authority to post on here but wanted to send update, I had an EMG of upper lower and face and tongue, everything was normal, she did not see ALS, however I am still having swallowing problems, not choking but food getting stuck going down and hurts my throat also raspy voice and a lot of phlem, is there a chance of Bulbar ALS with this negative EMG? I am just not sure what direction to turn

Hi Tillie, i know you've said that you won't participate on my thread again but I posted something new and i'd really like to know what your opinion on it. Hope you get to answer it. Thank you!

Thanks Tilly. I will post a question regarding Medicare. I have used the search function, but it is very difficult to wade thru all the posts, and some are quite old. Didn't want to post a question if it was very redundant; it seems that makes some members quite annoyed! TY for the friend request as well - my first!!

Hi Tillie. I have read your post (Sticky) regarding anticipatory planning. It is very helpful and I wanted to thank you personally for that! I don't know how to PM, or even if I am permitted to.... I do have a question though. If I use the search function, will I find info. regarding what DME is paid for / when from Medicare? I believe that you live in Australia, so I don't expect you to be an expert on US Medicare provisions. I was just wondering where to begin to search for this, before I attempt to start a new thread about something I am sure has been asked many times. Thank you in advance for your anticipated response, and for everything you do on this forum to help so many others!

Hi Tillie - I know I have been cleared by you all but staying away from this website has been hard. As I keep noticing myself jumble words and slur, I read a thread which has me very scared. It was the thread titled 'Humming' where you commented because if your knowledge. I thought those sounds were related to my asthma but after reading your comment I am all scared again. What should I do?

Thank you for letting me know that. I feel a little less awful now , in hindsight I should've sent a visitor message. I only felt compelled to say it as I've had that argument with myself about a peg. I'm a socially awkward person at the best of times. While I have you I wanted to say I'm very sorry for your loss, I can only imagine it was made that much harder for you both with ftd .
Also thanks for the online support you give

Again, my apologies.

I am sorry. Just wanted to get your thoughts directly. I apologize!

Hi Tillie-In November 2014 I woke w/numbness & tingling over my whole body. Saw a neuro in Dec. of 14 & had a clean physical exam along w/a clean EMG of my right side. Needle was placed in the elbow region & forearm, along w/quad, shin, hamstring & calf. Had a follow up in Jan. of 15, passed the physical exam, but did not have another EMG. Clean blood work (other than B-12) & brain MRI. Started taking B-12 as it was 212. I know a clean EMG means no ALS, but after the 2nd neuro exam the twitching came. I have twitched all over since the end of January 2015. I notice muscular changes, especially in my hands, which definitely have atrophy. Also, my right buttock is much smaller than my left. I still workout and have not lost any strength, but do fatigue faster. I have some sensory issues (I know these point away from ALS), such as intermittent tingling, burning sensations, and shocking pain that gives me a chills feeling. Was my EMG done too early? Your thoughts are much appreciated!

I'm having a great time learning new slang! I especially like Grandie's sounds so much sweeter then grandkids or grandchildren.

Trackie Dacks? Is that like what we would call a running or jogging suit or sweats?