Lightning speed

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Weltschmerz

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Hello, universe. I’m a woman in my 30s currently living abroad with my wife in her 40s, who has become a pALS after being diagnosed in January this year. Since then we’ve moved through canes, walkers, manual wheelchairs of varying degrees to an electric chair. Also the associated shower, toilet and other paraphernalia. We’ve also moved out of our house which had stairs, into temporary accommodation and now an apartment. Just this week we’ve also been schooled on ventilation, which is also now required (Trilogy). In only 6 months this has gone from being a minor irritant to a whole project of its own. I’ve managed to cope with all sorts of mobility adaptations but confess to being entirely overwhelmed by the idea of being responsible for assistance with ventilation. How do CALS manage to adapt over and over and over again? Any tips?!
 

lgelb

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Hi, Belgium. Sorry to hear about your wife. Being a CALS is definitely aiming at a moving target -- or more like whack-a-mole.

If you have Trilogy issues or concerns, or just want to know more about the care and feeding of the machine and settings, I am always happy to help and will send you my email.

Best,
Laurie
 

Weltschmerz

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Whack-a-mole is definitely how I’ve described this crazy project: seems like no sooner is one problem solved than another appears. The Trilogy is super new so we will have to see how it goes. For now, it’s a fear of another new thing rather than a concrete issue...but thanks for the support. I’ve been browsing these forums for a while already, and have benefitted from advice elsewhere on the site.
 

Nuts

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It seems the change never stops. Acceptance allowed me to stay sane—there is always another change around the corner, and you can’t prepare for all of them. As for mobility, a lift and a hospital bed may be next if you don’t have them. Try to enjoy the time you can—that may be all that you can control
 

affected

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welcome Weltschmerz, it's really hard when you are running to catch up. my husband was also rapid progression.
Is your wife looking at a trach and vent - I'm not sure if you are asking about the transition to 24/7 care on a vent or the current transition to using bipap a lot.
My husband refused bipap and we don't get to choose vents in Australia in general, but I sure know that it was constant changes every single week for us.
I truly feel like I basically just bumbled along, but everyone said I was doing an amazing job.
Talking here really helps keep on moving with it all.
 

Weltschmerz

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Thanks, everyone. It’s so lonely sometimes, it’s comforting to know that there are a few people out there who have an idea about this stuff. We’ve had a hospital bed for over a month now, and a lift for 6 weeks or so too. Many things have been rented/loaned for a deposit so that’s something. The Trilogy kit just seems new and scary compared to all of the devices for moving around. Guess we’ll see what it’s like soon enough - that and the balloon thing for practising stacking.
 

Ken15

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Since then we’ve moved through canes, walkers, manual wheelchairs of varying degrees to an electric chair. Also the associated shower, toilet and other paraphernalia.
In fewer words, you have described our 20-month journey with this disease. Your time frame is much more condensed, as well.

The best advice I can give you is to TRY to anticipate the "progression" as best you can and realize that you will ALWAYS have to adapt.

It's never too early to order assistive equipment. We're in the process of ordering a Hoyer lift; don't quite need it now, but sure will in the near future.

This forum is a great resource; use it liberally.

Ken
 

Weltschmerz

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Well we actually do have our first Trilogy question: how can I be alerted to any issues during the night? My PALS struggled earlier to get my attention by speaking from behind the mask. My hearing isn’t great at the best of times, never mind with the competing noises of a pressure mattress overlay and a fan!
 

lgelb

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If your wife has any finger movement, or any other reliable "twitch" muscle like a cheek, eye blink, toe, etc., there are "ability switches" that you tape to her working muscle and also attach to an alarm bell or trigger a text to you, etc. There are also Bluetooth setups.

Depending on how much volume she can muster, you could also position a baby monitor with audio sensitivity turned all the way up close enough to where it alerts you based on a change in volume. Or you can combine the two and have the baby monitor basically amplifying the alarm tone.

If you can be more specific about her capabilities, we can offer more specific ideas.
 

KateEmerson

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If your wife has hand/ finger strength, I can recommend the Smart Call Button Caregiver Paging System. My husband was trached/vented and for a couple of years he was able to alert me with these. It can hang around her neck or stuck to a hard surface, It comes with two call buttons so you can do both. They work very well, I could go anywhere in the house and he could alert me. You can buy them on Amazon for $21.00. The model we used was TL-5102TP.

[mod note: sell sheet removed]
 
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nona

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I bought a remote doorbell on amazon. We taped the push button to a Tupperware cover and I keep it near my feet. The ringer is in the other bedroom but it can go anywhere.
 

affected

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yes we had a doorbell for a while with a 100 m range so I could actually go outside the house and be called
 

Weltschmerz

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My wife has some residual strength in her right arm - not enough to pick something up but probably enough to press a light button. I did try to find an alarm of some sort but those are really good solutions above. I’ll try on amazon for those as I think they’ll be better than the baby monitor (for us, given my hearing). Thanks, everyone.
 

ReginaS

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We used CallToU and it worked quite well but you need an outlet for the alarm piece. You can combine a button with several alarm pieces and you can put these in different rooms. Like front of the house, back of the house, basement... Together w. a baby monitor or anything similar I could be outside. You could set the speaker level to different volumes and it has 50 (!!!) different ringtones.
 

Weltschmerz

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CALS
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Unfortunately the first care giver alarm hasn’t worked because my wife’s right thumb doesn't seem to have enough residual strength to push down a button. I wonder whether there are any with sensors? Or that only require a lighter touch somehow? Even pressing play on the music section of the iPhone (our fallback) seems to have become too hard now. This disease thing requires constant adaptation...
 
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