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starente15

Senior member
Joined
Oct 27, 2014
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809
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
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Northern
Hello everyone. At the last support group I attended, I spoke to someone with respiratory onset about what would happen if a person who's diaphragm is affected were to fall. Their wife gave me a checklist of 1) roll them onto their side, 2) get a pillow behind their back and head and 3) get the trilogy on asap.

I heard from my brother today that my father tripped while out on an errand and if he hadn't been there, he would have fallen face forward. He only uses a cane and it seems it's time to start taking the walker out. I am a nervous wreck thinking about how this could have gone down especially because he and my mother go out by themselves and my mother would never have the strength to support him the way my brother did.

I guess the question I don't want to ask is, with your respiratory system compromised, what will really happen? Inability to breathe at all? Cardiac arrest? :confused:

Thanks as always for any insight you can give.
 
First, to your question:

The head must be supported so the airway stays straight and open. If the airway becomes bent, a very uncomfortable "positional asphyxiation" could occur. (Think of holding a baby's head.) Also, the jugular could become bent, depriving the brain of blood-rich oxygen. (By uncomfortable, I mean it could cause a torturous death or stroke.)

One day, before we received the Hoyer Lift, I was lifting my wife out of bed to carry her to the bathroom, when I tripped and we fell together to the floor. I continued to lay there with her, cradling her head in one hand and calling 911 with the other. (I recommend CALS always keep their cell phone ready.)

We joked and laughed while waiting for the EMT's. When they arrived, I stayed laying there holding Krissy while I instructed the EMT's what to do with a paralyzed patient. They performed wonderfully, lifted her up properly, and left.

Now, my miscellaneous insight:

If you pressure your mom or dad to stop walking with the cane, you might get pushback. They're fully grown adults and in charge of their own decisions, even if you disagree, even if it's life and death. I always advocate letting the PALS make their own decisions without pressure. Family should support those decisions. Just my humble opinion.

Good luck. --Mike
 
My diaphragm is partially compromised. I can breath ok sitting or standing, and need my trilogy to sleep.
I fell recently and landed on my back. I was surprised that I could barely breath when flat on my back; I had to roll onto my side to get air.
I'm pretty sure with greater compromise someone would suffocate on their back.
 
Thanks Mike. Yes, it's challenging. I keep passing these tidbits on but they make their own choices. I dread the day something bad happens and hope we can deal with and recover from it.

Sorry you had to experience it. It must be terrifying having to react in that type of situation, trying to calm the PALS as well as yourself.

Greg - glad you made out ok and were able to 'roll with it'. I don't think my father would have the upper body strength. I had my mother practice with me just to make sure she would be able to push him over if needed.
 
... I could barely breath when flat on my back...

This was my greatest and most time-consuming fear while caring for Krissy. I lost a lot of sleep watching over her to ensure her pillows never moved out of position. Once a person loses neck control, it's a full time job to keep the airway open for them, even when sleeping, or sitting in the PWC, on the toilet, or in the car.
 
I can only imagine the emotional toll it must take. Constant worry and anticipation. It sounds like you did a wonderful job in making her safe and comfortable :)
 
... It sounds like you did a wonderful job in making her safe and comfortable :)

This will sound weird to most folks, but when Krissy died and I got past the initial pain and loss, my emotions changed. As a military man, I knew that my family (kids and I) had teamed up on a difficult and most important mission and delivered the best results possible. I gave my wife a happy, peaceful, and proper final year to her life. We did good by her, and I am actually proud of that.
 
Star, a bigger concern for your father is falling and cracking his head open. You should at least bring that up to them. when a healthy person falls, they can catch themselves somewhat. with a pals, it is like a tree falling in the forest....boom! they are down. there are many examples of pals that have fallen and have died from the injuries to the head, and others that have permanently injured shoulders and hips that just never heal, and they have so much more pain constantly to deal with. not a pretty thing.

My husband did not want to use a walker either and the cane was a joke. I got him an inexpensive scooter and he was so much safer, and it was fun to drive. just don't use Medicare to buy it---you need to save that for the Power wheel chair that is coming( they will not cover both items only one)
 
Not weird at all, Mike. My parents both had very long overlapping terminal illnesses and when my mom died my sister and I were proud of how we had cared for them too
 
Agree. Not weird at all Mike! You should be proud.

I brought it up to my mother tonight about safety concerns and suggesting the walker to him. She said she doesn't feel safe going anywhere without my brother so they are limiting their solo trips (what a relief). I know she watches him closely but she understands things can happen in just seconds and you can never really be prepared.

Heading back there next week for the clinic....
 
Star, It is very difficult to have to rely on others and the tools like walkers. None the less because of my love for my wife I use them and accept her help. Your father needs to know you are scared and he needs out of love to use his walker for you. I wish my daughter would contact me and tell me she cares.
 
I'm one who had to deal with a PALS that would not care about safety and had falls with serious injuries. He was scared stiff of hospitals as he couldn't speak, yet with FTD felt that he had a right to be unsafe and not care of the affect on others.

He never had breathing issues at the times of his falls. Still simply keeping bleeding contained and trying to relieve the pain a bit while waiting for ambulances was bad enough.

By the time his breathing was bad he had been forced to stop walking as he simply couldn't.

You also need to talk to you mum about the need to step back and let him fall if he does. If she tries to 'catch' him, she risks going down with him and being seriously injured.

PALS truly look so much more dignified using a walker or in a PWC than in pieces on the floor!

However, it's again one of those situations where you just kind of have to let them make poor decisions sometimes.

Like Mike, I am proud that I looked after Chris the way I did, and for the way I let him have as much control as this disease allows. I very often did not agree with his choices, but they were all he had left.
 
Hi Starente,

I certainly echo Barbie's recommendation to buy a mobility scooter. They are cheap and extend one's mobility tremendously over walkers and canes, both of which I was using when I rented one to try it. I was sold. My personal preference is a 3-wheeled Pride Go-Go Elite Traveller - well made, maneuverable, light and very portable. I got my first Go Go in 2005, the same year I got my first ramp van. My progression is slow so I still use one today instead of a wheelchair.

Its principle use is in my home but they are also good in crowded restaurants or theatres. For going shopping and other activities I use a larger 3 wheel scooter but need my van for that. Right now we are at a cottage about 1000 miles from my home. We flew here and rented a car. My wife (all 5' 1" and 110 lb of her) can quickly disassemble the Go Go and put it in the trunk of a car so I am mobile for travelling without the need of a ramp van.

John
 
I wish my daughter would contact me and tell me she cares.

This makes me sad Pete :( I know it can be hard for "kids" of parents with ALS (I'm 45). It's terrifying to watch a parent struggle and sometimes not knowing what to say or do results in saying and doing nothing because it's too overwhelming. I've had to compartmentalize so many thoughts just so I can be there to help and let my dad know that I'm there for him. I hope she can find a way to work through it and comes around. From my standpoint, it's taken therapy, medication and support from others.
 
Tripete said: I wish my daughter would contact me and tell me she cares.

And Star said: This makes me sad Pete

Sad, indeed. I wish I knew her phone number. I'd encourage her to call.

We see, all the time, that even our loved ones sometimes can't handle the truth. They avoid us because they're scared. They don't know how to handle it.
 
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