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katygal

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CALS
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01/2018
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US
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Texas
Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017. Sadly, his breathing became affected shortly thereafter. In January 2018, his FVC was 52%, in April 2018 it was 48%, July of 2018 it was 42%, and in October 2018 is was 38%. I have read that breathing progression can fluctuate but on the average, the progression is pretty linear. My PALS biggest concern is being a burden to me and our girls...financially, emotionally and physically. Because of that concern, he is always hesitant to spend lots of money on equipment that MAY be necessary but not needed at this time, such as a PWC and lift chair. I understand where he is coming from but I also don't want to be waiting for 6 months to get a necessary item. He has chosen not to use invasive ventilation (he does use a Trilogy) and no feeding tube. So with all that said...I think regarding his breathing, he believes his past progression leans toward a continued progression and why spend all that money if he won't need a PWC or other expensive equipment for very long.

Being a planner, I want to try to make sure I stay one step ahead of his progression but I also want to honor his input at this time. I also know that our local ALSA may be able to provide things temporarily if that becomes necessary.

So, after that long post, I am wondering too. Based the experiences you all of seen and heard on this forum, does breathing progression typically stay pretty steady? At what point in FVC does hospice become a necessary choice? I am not trying to determine the end, just wondering if the odds lean in favor of major changes and purchases at this time? We attend Clinic next week and this is something I will also discuss with our team.

May you all have a special day with a special moment to remember.
 

Doglady

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A power wheelchair and other medically necessary items that would make your husband more comfortable and your caregiving experience easier should be paid for by insurance. I’m sure the clinic will help you figure all of this out.
 

affected

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lgelb

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Hospice is never a "necessary choice." How he lives and dies with ALS is your choice as a couple.

If/when you feel you need more help with the transition process, your doc can write an order and you can speak with an agency.

FVC can level off for some time. Many use a BiPAP full-time for a year or more.

A lift chair is not a necessity, either, but the lead time for a power wheelchair that fits/is comfortable is a matter of months, so you don't want to skip that one if his mobility is declining. Otherwise, without a proper chair, he would be confined to bed. True, without a feeding tube, if he loses swallowing ability, his lifespan will be more limited. Where does he stand in terms of food and drink?

You can speak with your clinic about the timing/process for getting a power chair at your visit next week. And as noted, that is covered by insurance.

Best,
Laurie
 

katygal

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Joined
Jul 24, 2018
Messages
24
Reason
CALS
Diagnosis
01/2018
Country
US
State
Texas
Laurie,
He is able to eat and drink whatever he wants at this time. I do hear more "noises" when he is eating but the most difficult thing about mealtime is his breathing and his hands get tired. He is able to transfer on his own and his main mode of transportation in the house is a Drive scooter. He still showers on his own but again, the difficulty is his breathing. A shower or shaving wears him out. He stays on the BiPap for about 12 hours at night and then several hours during the day. When he is not on it, you can see him using accessory muscles to breathe. When he gets off the BiPap, he has a "recovery" time since his diaphragm has had help and is then on its own. To be blunt, I think he doesn't want to make a lot of major purchases or to remodel our bathroom because he feels his breathing is continuing to weaken and can't see himself living with this beast for very long. As for me, I want to be prepared AND honor his thoughts and wishes. He doesn't won't to continue life here if it means being fully dependent on machines or me.
Thanks for your thoughts. I always gain so much from your posts.
 

Doglady

Active member
Joined
Aug 6, 2018
Messages
64
Reason
PALS
Diagnosis
04/2018
Country
US
State
Minnesota
Katygal-
While his desires to preserve resources for his family after he is gone are admirable the equipment and home modifications so many PALS utilize are needed to relieve their CALS of unnecessary pain and injury in caring for us. The more comfortable, safe and independent a PALS ican be during whatever length of time we have is important for the family too.
 

lgelb

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Thanks for the kind words. Insurance will pay for at least 95% of the wheelchair cost (the elevation feature is the only caveat).

That would be way ahead of remodeling for me, unless a remodel is needed for the wheelchair to fit a critical part of the home. Likewise, if you get the right wheelchair set up how he needs it, a lift chair is superfluous.

If he needs the BiPAP all the time, there is no reason not to use it...he will have more energy to appreciate the activities he can still engage in and the people with him.

Best,
Laurie
 
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