CALS Roll Call Continued

[lgelb]

Mary, different clinics run different tests. Most will produce an FVC (forced vital capacity, how much air you can exhale after a deep breath, so sort of testing inhalation and exhalation at the same time) and/or MIP (maximum inspiratory pressure) from time to time as these are the Medicare measures for whether a BiPAP/noninvasive ventilator will be reimbursed (<50% and <60cm, respectively). Studies suggest that SNIF/SNIP (the pressure someone generates by breathing in through their nose) is a good idea in ALS, because it does not require a mouthpiece seal and tests a somewhat different set of muscles, but not everyone is on board as yet.

As Tillie notes, what P/CALS do for self-care isn't about numbers as much as how thing are going functionally, just that in the States, we do have to pay attention to certain numbers long enough to get a BiPAP reimbursed (the kind that are plugged in can be had below the $1000 threshold, but the bigger kind that have batteries, aka Trilogy or Astral, are far more). However, I always note that any doc can write a BiPAP without numerical thresholds being met, if reimbursement is not an issue.

It does not actually require a pulmonologist to order respiratory tests like these -- the neurologist at the clinic can do it, or outside the clinic, another doc. Nor is it required that it be a pulmo that orders the machine, since not all PALS have ready to access to one, so long as the justification is there.

 

[Mary2]

Thank you all! Jim, we will consider doing what you and Darcey did for communication. Right now my husband wants to press the button for the mobile help device (which is really meant for people who have fallen) because the machine loudly says "Call in Progress". I have reservations about this idea myself.

 

[Mary2]

Thank you, Igelb... I will try and heed your advice that it isn't about the numbers. My Pals is rather a numbers person and can become focused too much on the numbers.

 

[rmt]

We had our virtual VA ALS Clinic visit yesterday. We are both pretty tired of having appointments, so we weren't looking forward to it. But with the new feeding tube, it was very helpful to talk to the nutritionist about which formulas they can provide and how best to blend our own food. Originally they were only sending about 2.5 weeks worth of formula at a time, but they are changing that to a 3 month supply each time! We have the storage space so I'm happy to not have to reorder every 2 weeks.

Otherwise it has been a fairly uneventful week, which was nice. We are going to my parents' cabin this weekend. It will be fun to get away even just for a few days. Before he got the feeding tube, I was really nervous about going anywhere. But now I'm excited to make the most of this summer!

 

[affected]

It is ridiculous how quickly 2 weeks rolls around, so I'm really glad they have changed this regime. It also means you unlikely to end in a crisis as you should order well before you are running out so that if there is a delay of some extra days it is no problem.

I'm so happy that you are going to be able to have a getaway now, what a lifestyle changer this move will be for you both!

 

[vltsra]

Glad to hear the feeding tube is working out for you, Robin. We do use our own food along with Real Food Blends. Good for you to do a getaway. I was talking to my PALS last night and not sure we would be able to do anything like that any longer. While he was still able, we did a number of trips and I'm thankful that we did them. Hard to believe we went to Yellowstone 2 years ago and he was still able to walk (with a walker) and speak clearly.

The June gloom is finally starting to burn off and it's a beautiful day. I have an outing planned for us today.

I'm going to try and see if I can do a respite trip in September. Given that we are in this for the long term, I think it will help me to know that I can have a getaway on occasion. My PALS' friend says he will stay, but I'm probably going to shell out for 24-hour care during my absence.

V

 

[affected]

Having a friend stay V, and paying for care is probably the perfect mix. The friend can then be a friend, give company and the reassurance of someone he knows, and the paid people can do the hard yards. You do need these breaks that is for sure!

 

[Mary2]

I have been looking over the Forum for information about rotating air mattresses. It seems as if PALS get by without having the Lateral feature with the air mattress. The Lateral feature seems expensive and my PALS is hesitant about having a mattress turn him in the bed. How important is this feature?

 

[lgelb]

For most PALS, it's not. A foam overlay on top of a medical grade foam hospital bed mattress, or sometimes a low air loss overlay or mattress will most often suffice.

I wouldn't even consider an air mattress without trying a foam mattress first.

Lateral rotation when you can't move at all can be disturbing in terms of sleep, may put pressure on bony prominences, cause problems with joint stability, etc. These were designed for spinal cord injury, a very different problem.

 

[Mary2]

Thanks for the information Igelb. We are going along here. Pals uses his BiPap during the day now so as not to use too many calories. He has gotten into an audio book and I actually left the house and took a pottery class....I always wanted to try a potter's wheel and enjoyed this very much!

 

[JimInVA]

Darcey had symptoms that were diagnosed as an autoimmune disease at first (CIDP). It was recoverable. So we put life on hold for over a year as we worked to get her better. Finally, with function continuing to decline and our primary neurologist unwilling to make a different diagnosis, we asked for a referral to Johns Hopkins Hospital. We were told that referrals there often did not happen immediately, if at all. We said, "Don't care... send the referral!" Within two weeks, we were accepted and an initial appointment was granted.

Darcey had been losing no less than about 10 pounds a month. Talking to the Johns Hopkins neurologist, he said, "I'm not surprised!" He continued with, "At night, it is like she is running a marathon. Her lungs are working to get O2 in and CO2 out... but she's not being very successful with that at night. And immediately, they prescribed a BiPAP for her, Using it them, only at night, her weight loss stopped and she quit falling asleep in the middle of conversations. Also, the one or two mid-day naps ceased to be necessary.

Mary - your PALS is right to use it where is helps. I'm SO VERY GLAD to hear that!!!

My best....

Jim

 

[vltsra]

Checking in after a rough night. About 1 am I was awakened by the BiPap alarm. When I got up to check it, the electricity in the bedroom had gone out. It kept cycling on and off; after checking the breaker, unplugging everything in the room, plugging the BiPap into a different outlet with surge protector, etc., etc., I got a heavy-duty extension cord out of the garage and plugged it into a different room. After troubleshooting this morning, I think it is the BiPap itself; we have a second machine and it is working just fine, but the original machine is causing electrical problems again this morning. Don't know if anyone else has had this happen. I really get stressed when the equipment we are counting on fails us; as if it isn't enough to be taking care of a PALS with advanced ALS. I know at this point we have a lot of equipment that is plugged in to keep my PALS going.

Mary, I bought an alternating air mattress overlay for my PALS. The reason I bought it was to hopefully avoid bedsores. He isn't strictly bedridden, still uses his power chair, but cannot move himself in bed. He needs to sleep sitting up so a mattress that will turn him wouldn't be helpful for him. So far we haven't had bedsore issues.

I'm so excited for you to take a pottery class! My PALS and I were in a class together years back. I guess that's when he started noticing weakness in his left hand. It's important to do these things to keep yourself (relatively) sane.

V

 

[JimInVA]

Mary,

Here is a recent post where I describe our use of a Low Air Loss Alternating Pressure 8" Air Mattress -

Caregiving tips and mobility questions

Bowel problems usually include constipation at some stage, but the opposite as well. That can relate to the combination of diet (including tube feeds) and which muscles are overly weak. Various combinations of dietary changes, fiber, and/or laxatives may help. A "regular" power hospital bed...

www.alsforums.com

As Darcey's ALS progressed, she began having difficulties moving (on her own) in bed. We installed bed rails... and those worked for the short time that she still could use her hand and arm muscles. When she couldn't lift up her leg while laying down, she first used a long scarf that she wrapped around her knee (which she'd then pull on to cause her leg to move). Much too quickly, her progression took her ability to do these things away. It was then that we moved her to a hospital bed (with its flimsy standard minimal mattress).

Darcey, for some reason, was resistant to using one of these mattresses. We'd had it for several weeks and she kept saying "no" when I'd ask if I could put it on her bed. One night, I simply didn't ask... and replaced the flimsy mattress with the 8" mattress. She loved it and never looked back! Finally, she was able to sleep through the night (where, previously, she'd wake up when she needed to be turned/moved). And because she was able to sleep, I was able to sleep.

When your husband is no longer able to turn in bed on his own... and needs to wake you for help, you need one of these. Personally, I think that once one moves to the hospital bed, that this should automatically be included... BEFORE you need it. Our first one was provided by our local ALS ORG Loaner Closet. When it developed a leak, I purchased a replacement for about $800... a very small price for so priceless a benefit. If anyone has to privately purchase one of these, reach out to me via Private Message (Conversations) so I can give you some helpful information. There are some sleazy folks out there selling inferior versions of this that you don't want.

My best...

Jim

 

[lgelb]

I definitely agree that a medical grade foam mattress needs some kind of overlay -- latex, furniture-grade foam, low air loss, what have you. The mattress alone isn't designed for the total hours a PALS will use it. You can also place a slip sheet with handles between the top sheet and overlay for transfer help, and/or a low voltage heating pad between the mattress and overlay.

 

[affected]

We found an alternating pressure mattress was pure gold for Chris as he had so little ability to move. Roho when out of bed, checking the pressure of the cells every day before using was the next bit of gold.
Then of course skin care is just as critical no matter what combination of mattress, overlays and cushions are used.

V I would also be really distressed, particularly as you had to wake and deal with this detective work during the middle of the night, never a good thing!