affected

Hi Affected, My mom was diagnosed with Progressive Bulbar Palsy over a year ago. She has had a feeding tube in for a few months now, she lost all speaking abilities pretty much right away. She started uncontrollably grinding her teeth. I read something you wrote about a mouth guard being a bad idea. Do you have any suggestions as to what we could get for her so she doesn't break all of her teeth? Thank you!

Hi there..im wonderinh if you might iniw what became of a lady named Jean on here..she was on for years, last on 2014. She had PMA. Thx for any help.

Hi, I looked for the Facebook group you mentioned about FTD. I found one called The FTD Spouse - is that it? Not much about ALS there, but plenty about caring for someone with FTD. If there's a different one, can you tell me what to search for?

Thanks,
Krys

Hi Tillie, I just wanted to thank you for all of your kind, helpful, supportive words over the years.

Lenore

Hi Tillie,
I imagine there is still no update on Pete but feel the need to ask anyway. I think about he and Carey often and wonder if Petes journey is over. Please keep me updated if you hear anything (as I'm sure you would anyway). Again...your an angel.

Hi Tillie,
I figured I'd just ask if you had anything from Pete and Carey? My guess is you would have mentioned it but I've been thinking about them a lot lately so I thought I'd ask. Odd how a person can feel such connections to people they have never met. "They" being me�� I hope your holidays were wonderful. I think what you do for so many here is wonderful. Thank you Tillie. Your a gem. Jlynn

Ok. Thank you Tillie. By the way...what a beautiful picture of you and your husband on the memorial page. It's nice to know what you look like��

Hi Tillie,
I thought you may be the one to ask. I've noticed that K1234/Karen has not posted since I think August. I'm assuming that she has finally been set free from the beast? I wondered if you knew anything? Thanks, Jlynn

Tillie,
I've been trying to send you a private message, but after I click "submit" nothing reflects I've sent a message. Did you receive it? Maybe multiple copies of it I kept trying.
Thanks,
Mary

We drove up to Brisbane at the end of June and couldn’t believe how dry it was. I hope your not too close to the bushfires. Way too early to be having bad fires. I’ve been keeping an eye on th ones in the States, we were over there last year visiting some of the areas that are affected now, it’s just horrible.

That’s ok.
Sorry this is a late reply,
I’m still trying to navigate this site.
Hope you are well and warm, it’s just freezing here in Adelaide, can’t wait for warmer weather

Thank you for listening! It is so wonderful to communicate with someone who knows both parts of the ALS/FTD equation. I have several CALS friends who get the ALS part fully, but not the FTD.

I am thinking from what you said that maybe the lack of interest in his iPad is CO2. He slept 15 hours last night and took an hour nap. He really likes the bipap, probably because he feels better with it on. I am going to make sure we find out his CO2 level on the 11th, and if things get worse before then I'll call them. We go to the sleep lab on the 2nd for them to read the data chip in the bipap and adjust settings. That may be enlightening also. I'll ask if they can do a blood gases test.

Thanks for the insight.

Mary

Tillie,
Thanks for the replies! I didn't know about the private message feature, so I will try to push it over to that. I had more in my original message, over twice as much, and I had to chop a bunch out to post it

I don't know exactly how to articulate the "speeding up" exactly. I know his FTD has progressed quite a bit, less language and less emotion, less connection. But he isn't distressed which is huge. His breathing is shallow and rapid but his O2 was fine last time it was tested. We go to the ALS Clinic on July 11th so we should know more about his breathing then.

Thanks for listening! Sometimes it is hard to tell objective observations from emotional ones. I am usually pretty perceptive about people and things and draw valid conclusions without necessarily knowing why - kind of intuitive. But this whole process is so wrapped in emotions it's hard to know what is valid.

Mary

Tillie,
More info that wouldn't fit. His ALS started from the head down, ie neck, shoulders, upper arms. He can still use his hands somewhat. His breathing was at 50% in April, dropping form 80% in January.
Mary

Tillie,

Would you would be willing to talk to me about the progression ALS/FTD and give me insight

My PALS has ALS/FTD(language variant), diagnosed in May 17. Today he sleeps 12 -15 hrs a night, sits in bed raised up so his head is supported and does jigsaw puzzles on his iPad, doesn't converse and can't follow conversations. He has a PEG & bipap at night, in April his breathing was 50%. He can still walk. He is not in any mental distress. He has started putting his iPad aside and just sitting there during the day.

I think the dementia took a downward turn when he had the feeding tube placed at the beginning of May.

My gut feeling is that things are speeding up, but what do I know, and is that just because I can't deal with thinking he has years of this?

Any insight you have to give would be so appreciated. I don't know anyone who really "gets" the combination of these two horrendous diseases.

Mary