Recent content by Steele

What's the deal with the hot flashes? I believe it's related to air hunger right? My Dad gets them when he's exerted himself (eating or going to the bathroom) so i assume air hunger...

Thank you so much for all your posts in this thread Pete. Your kindness and consideration of others is commendable and you are making an impact in this world more than you know. My Dad is in a similar situation as you and as hard as it's been to read, knowing what you are going through helps me...

Sorry for the lack of context, sometimes i feel like i babble too much with backstory! My Dad had his clinic appointment yesterday and the neurologist highly suggested increasing his morphine again, as he's feeling short of breath more than 50% of the day. 2 months ago, he began at 0.5mg up to 3...

Oops i meant CALS...

Hi all, just curious for those of you on morphine, what was your initial prescription and how did it progress? I'd love to hear from PALS too. What dose does it typically get up to near the end?

Hi Carla, This forum is kind of confusing to me... I'm pretty good on computers but new to forums - sorry for not responding. How are you guys doing? How's your Dad? Mine is declining (breathing & swallowing) but doing ok so far in that he can still talk and walk a bit. We've found the ALS...

Hi Lena, sorry for the delay, I didn't realise I had a message. So sorry to hear about your Dad. This disease is completely heartbreaking. My Dad is declining pretty quickly in regards to breathing and swallowing but im really grateful he can still talk amd walk (minimally). How is your Dad...

Thank you very much for these perspectives and suggestions and insights. I agree that there are things unsaid and now is the time for even more frank discussions. I really appreciate you all taking the time to reply and help us out. You continually make this terrible journey less lonely.

Thanks you guys. He was initially slated for a PEG then it was the RIG he was scheduled for in August. When I talked to the Clinic a few weeks ago, they said neither was an option anymore and reminded me Dad had declined twice before. So maybe that's why they just shut down the question, more to...

My Dad is now at the stage that he is having trouble swallowing. He can still walk and talk (minimally) but his main issues are with breathing and now swallowing. He has declined the feeding tube twice, last time was in August when he went to the appointment for the tube surgery and an hour in...

Thank you all for your input and advice. I have spoken to our ALS Clinic and the administrator actually had some great insight into it all, as she had just been through this with her grandfather (not diagnosed with ALS). She also had a doctor send out a package of information about the MAID...

Thanks for the replies everyone and sorry i wasn't particularly clear in my post. Dad is still newly diagnosed and can still walk and talk and eat although all of that is fading fast. His breathing is laboured but he doesnt use his bipap as much as he should. He refused peg. (Doesnt see why...

My dad keeps saying he doesnt want to wake up. He hates that he cant do anytjing but is refusing almost all interventions (peg, walker, scooter, wheelchair, etc... he does have a bipap and cough assist but only uses it about 5 hours at night instead of most of the day as per dr). We keep trying...

Hi all, We had an appointment today and the main dr is open to prescribing cbd oil and any other cannabis products my dad needs. After some research a few months ago I bought him CBD oil that is 10mg/ml. Going forward though, I know some people suggest other versions like adding some THC to the...

Hi Carla, so sorry I missed your message. Im new to forums and didnt know it was here. How are you guys doing? I just posted in Newly Diagnosed with a littke update. I hope things are ok for you guys. What a shitty thing, this ALS...