CALS Roll Call Continued

I am still in Hawaii which is amazing! We took a sunset cruise last night. So glad we took this trip. We are having tons of fun.
 
Re: PALS roll call Wednesdays ( or whenever)

Still here thank you
 
Gem I hope you really do slow down just a little once you have the car fixed and the water problem solved and you have packed out of and unpacked into a new house. Wow that sounds like it will keep you going a while actually.

But really, this weekend, I'm sitting here Thursday morning thinking, wow, here she goes! Give BJ a hug for me xx

Michelle I hope you get mobile again soon, it is so isolating when you can't get out. Do people from your church visit you both?
You may need to keep the trilogy on him while transferring with the hoist by the sounds.

Sooner, aloha and have a ball :)

Waving to Angeljo2 :)
 
Michele, Gembread, Aussiemndcarer, - I am sorry to read of your daily struggles and too few triumphs. I feel your frustration, anxiety and pain ..... we are but a few steps behind.... It is so hard to know what to do and what to request (durable medical equipment) as this is, as someone stated "a moving target". I have spent >30 years of my life as a PTA, so I have been a bit lax at getting equipment ordered. I KNOW I can move my husband, as I have lifted/transferred much, much heavier people in my career. My PALS / Dave, now weighs less than me. He continues to lose weight and now his respiratory function has showed signicant decline in the past 5-6 days. Dave was scheduled for a "full pulmonary panel" including blood gases and a lab supervised sleep study for July 29th. Today I called the ALS clinic and told them he may not last until 7/29. He is demonstrating a marked decline in his breathing capacity, both at rest and while sleeping. We have ZERO equipment so far. I called the ALS care liaison nurse today and told her that I almost took Dave to the ED yesterday due to respiratory decline (and voice projection decline). Long story short, we have an appt. tomorrow with pulmonary medicine. I think Dave needs a BiPap or Trilogy NOW!! Hopefully we can move that forward quickly, as he is exhausted all the time and does not sleep well, despite 2 bed wedges and me checking and repositioning him several times per night. I will need to do some reading here and get advice regarding Bipap vs. Trilogy and what Medicare covers, etc. I am williing to buy a used BiPap outright and "save" our option for a Trilogy if need be, but it would only be to utilize the advanced settings (forced inspiratory volume, etc.) of the Trilogy, as Dave does not want to be vented.

Tillie, I read "Tillies Trees" when I get the chance, and I find it interesting and inspirational.

Soonerwife, I am so glad you made the trip to HI and are finding it wonderful and having some fun. We have been to HI many times and at one time Dave wanted us to move there.

Love to you all, and I am glad we get to share here, even if it is to "vent" or to share our sorrows and our small triumphs.
 
Buckhorn, we had a trilogy from the start that is the start of needing resp. help. I always thought we would get a bipap but the pulmo simply said he liked the trilogy better even if you never vent. we were fine with that as it just didn't matter and medicare paid for either one. don't go buy a bipap--the trilogy has the same functions and then some.

When my hubby finally agreed to get the trilogy it all happened very quickly. maybe 2 days total.
 
Thanks Barbie! Hopefully we will get some answers soon. I cannot bear to watch/hear my hubby struggle to breath at night and have no assist during the day. Does anyone know if the Trilogy is "portable" and can be taken on airplances, etc? We still have some travel plans, one involving an international plane flight and cruise, if Dave is able. TY!
 
The trilogy is portable. We brought ours to Hawaii with us. You probably need a letter from your doctor to take it on the plane. Security asked for the letter when went left Tulsa. If he plans to use it on the plane, it will probably be needed as well.
 
Steve never needed a letter for his trilogy to come on the plane or be ised on the plane. Southwest told us it was only needed if oxygen came into the cabin
 
Thank you for the info Barbie, soonerwife & gooseberry. I'm hoping we get
Some answers today.
 
Buckhorn, when you get the Trilogy, request an extra external battery. In addition to a normal AC power cord, you can also get one that plugs into the cigarette lighter in a car.
 
Good idea about the extra battery! Thanks!
 
was feeling OK then i told a new coworker about kathy. now i'm sitting at my desk in tears. it's so *&%$ unfair.
she should be here.
 
So sorry Loverly! ALS is soooo unfair!
 
Hi all, missed Wednesday but still here with tears,laughs,and swear words all at once. Loverly, my heart goes out to you.
Buckhorn, good luck with the machines. I really don't know the difference between a trilogy and Bipap machine. All I know is make a big noise and get what your Pals needs now. That is how our journey began with breathing machines. I'm sure that my Jim wouldn't be here without such a quick response from my panic calls to our GP. Sooner.....I can only imagine what Hawaii is like, live it up! I wish we could join you from across the miles. One day.......
 
This is the first time I've posted here on the CALS roll call. I've been feeling very down lately. My PALS tells me he feels a lot of weakness in his legs I had been hoping the slow progression diagnosis was a blessing, and that only his left hand and arm were affected but now I'm not so sure. He has never been 100% healthy throughout our life together, but now this horrible disease. He says most days he feels exhausted. Maybe I was still happy after coming home from upper Michigan last week and now we're back to reality and stress, I don't know. I keep wondering when we will have to move out of our house with all these stairs.

V
 
Back
Top