CALS Roll Call Continued

I missed Wednesday, but because of that I get to respond to Adconley.

We continue to get new stuff faster than we can learn to use it: the power wheelchair, a suction machine, and replacement of our semi-powered hospital bed with one that also has a control to raise and lower the whole thing with buttons instead of a crank. The wheelchair arrived at the same time as the return of the rains so we haven't been outside with it yet, but it will be lovely to go for long "walks" in the neighborhood again. The friend who was working on a raised platform for the recliner finished it, and now Douglas can get in and out of it much more easily. He's still in a cheerful mood, which makes everything so much easier.

Adconley, Douglas was diagnosed last May and had a PEG placement in December. Within six weeks he was using it for almost all nutrition, although he still does some recreational eating. Douglas hasn't been able to use his arms and hands for much of anything for a few months now. He's not embarrassed to ask for a straw for his beer, wine, coffee, or soup in a restaurant, and often takes a professional caregiver to restaurants to feed him solid food. His voice is getting more difficult to understand, even for me. His legs are still strong, although he tires quickly. He now uses AVAPS all night every night but doesn't need it during the day. He's been fairly stable recently and new equipment and meds have actually made his life easier.

I feed very fortunate that ALS started when our kids were grown up and after I had retired, so I don't have the pressure of needing to work while also being a caregiver. As I said above, it's also easier when Douglas is feeling good about life, which he wasn't for the first several months. Even so it's very hard to take over all of the things that he used to handle, plus feed and medicate him a few times a day plus bathe him and take care of his teeth and pull his pants up and down at the toilet (I love our bidet toilet seat!) and scratch his itches and set up TV shows and help him read and write emails and and and. We have caregivers here 3 times per week: one for two eight-hour shifts that we pay for, and another from a different agency for a six-hour shift funded by the local ALS Association. I had hoped to use that time for myself, which occasionally works but usually I end up running errands or endless rearranging of the house.

Like everyone here it helps me a lot to read posts from others and to be able to rant occasionally, even if my rants seem so much less significant than those of others.

Janis
 
Hello there , I too am new here, As I was reading your post my heart went out to you...so many changes so quickly. What is the AVAPS? Hope you don't mind my asking.
 
welcome Nealbob - it is a type of bipap machine, to help breath :)
 
We celebrated our 36 th Wedding Anniversary this week, BJ wrote me a beautiful message in a card but it took such a huge effort to do and he broke out in a sweat and was exhausted afterwards, BJ had the neatest hand writing but now it breaks my heart to see his efforts. I am hoping most of the major running around and buying the things needed for the new house is now done, now we start on having to do the inside painting which means choosing colours, it certainly takes my mind of ALS. With all the running around for the house my poor BJ has been left to his devices so it will be nice to give him some quality time and some extra spoiling.
Luv Gem
 
Chumpy still here! Grumpy too! Lol my new nickname for my PAL....
I LOVE HIM But he is a cranky fella!
So to update, progression still super fast and scary. FVC is at 40%, down to 114lbs from original weight of 200lbs 5'11".... Doctor wants him to do tracheotomy, he is using mask with the trilogy 100 now. Doctor thinks tracheotomy will help energy and to breath better. PAL is not sure about it, not ready. Hands are weaker, barely can brush his teeth with electric tooth brush, but still got the remote under control for the TV! Still walking too, thank you God! What a blessing! We are thinking about starting the order for the power chair though. Energy is like GOLD, need to save all we can and to use in the best possible way. Well that's my update, sorry haven't been on much!
Prayers and blessings to all! #endals
 
Chumpy, that's pretty scary weight loss. Does he have a PEG? That would probably do a lot more for weight loss than a trach. With a FVC of 40, I don't see a rush, compared to stemming weight loss which is very dangerous. Saving energy w/ a wheelchair will be good, too.

Nealbob, AVAPS is the mode on a BiPAP machine made by Respironics that gives the PALS a certain amount of air for every breath. The same capability is called VPAP on ResMed machines. PALS generally end up on one or the other.
 
Laurie, can I just call his machine BiPAP to avoid confusion?
 
Janis, most say bipap. If you need help from laurie, you will need to be more specific about the machine but she will walk you thru the info she needs.
 
The machine is working great, I was just curious about terminology.
 
Yup, Janis, it's a BiPAP running in AVAPS mode, like a car on cruise control (sort of). Saying "AVAPS" just denotes that your machine is a Respironics brand machine.
 
Late Wednesday afternoon here.
You all know I'm around ;)

Tough week for me as Friday marks 2 years since I lost Chris. So far I'm not doing too badly. I'm working with my favourite client on the day, then spending the later afternoon with a past CALS. Not sure what we will do yet, but we will think of something nice.
 
Finally we are looking like the cold is behind us. M is back to his baseline. Since our horrible Feb/Mar adventures. He did fall trying to pick up a ball to throw for Kosmo our dog. I turned the corner and saw the shatter of the antique door of our floor cabinet. My momentary oh no! about the cabinet. How inappropriate of me, it is just a cabinet. Luckily M not hurt other than his ego. We got a chuckle when I asked if he could do the same for the other side so the doors would be matched.
M's 92 yr old dad in law is failing. He has Parkinson's and cervical arthritis that has him only able to look down. He has lost weight and his pants keep falling down. So yesterday's mission was to get him pants. No sweats for this dapper man. Alas the the pair I got, the fly button was too stiff and he had an accident in the men's room. I felt bad. Back to the drawing board.
As my father in law says: old age ain't for sissies. Neither is motor neuron disease. I am overwhelmed at times watching each of these wonderful men struggle with their losses. I cope with weeding with a vengeance and walks with Kosmo in our lovely community. I appreciate sharing in this forum other's struggles and achievements.
I have a new great niece Juniper Grace and on the 25th of this month will have two new twin girls born to my nephew.
Tillie thoughts to you on this difficult week
Gembead happy anniversary and get through the paint color stage of your renovation.
Chumpy give Grumpy a hug
Janus glad you found the right settings
Salutations to all the Kings and Queens out there.
Anna
 

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Just checking in and it's Thursday morning here in Australia. Where did Wed go?..
Our days can be so good here and then in a blink, not so.......
On the bright side of things, we finally managed to get a cushion that has gel inserts for my pals electric chair.
What a difference. Now,maybe We can venture further. ( the electric chair also has breathing machine on the back)
Have a good week everyone.
 
Near bedtime here...stopped by to say hello to ya'll. I know you are making it the best you can...greatest folks on earth, CALS. 6 months day since we lost Tracy came and went since last Wednesday, my how time flies. A lot in my heart...nothing to say. Hope you all have a good week.

tc
 
Hugs TC, there aren't really any words xx
 
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