My dad is still doing well...

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worrieddaughter77

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Hi everyone,

First of all I would like to thank you all for being such an invaluable community for the newly diagnosed and beyond. I don't know where else is get all of the knowledge about taking care of my dad without you support!!!

My dad is still doing well!!! Although he's been completely paralyzed, after we moved to Finland his progress seem to have slowed down. He still only uses bipap at night, although he has the bulbar insert. His oxygen levels are about 92 these days. Using eyegaze is harder for him now, as his head is now almost completely locked, so he depends on the position of the computer, and positioning him correctly and calibrating the eye gaze can be difficult at times. This is the only problem that the staff is calling me to help to solve now, everything else is completely handled by the amazing staff of the nurses in his home in Finland.

We all keep wondering, could lowering the stress of my dad's care be a contributing factor in my dad's progression? Or is it just how this desease is... Speeding up or slowing down unpredictably.

What really warms my heart is that my dad and mom have a lot of quality time together on a regular basis now. Their routine is to watch movies together at 7pm every night, after his care is done and before he goes to sleep... My dad also started writing poetry and shares it on Facebook.

I'm going to attach some pictures of him over the past year and a half.

Thank you all again for being so kind, knowledgeable and helpful. This desease is cruel, but it brings families together and makes everyone better people in the end, somehow...

Anna
 

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worrieddaughter77

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Some of my dad's amazing nurses and my dad.
 

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worrieddaughter77

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This is a note on the door of my dad's room in his home. It's a reminder of my dad's needs to every new staff that takes care of him.

The first time I saw this, I broke in tears.
 

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worrieddaughter77

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This is an article in a local newspaper about the New concept of living in these community buildings where all generations can live together, and facilities from daycare to a nursing home are all located closeby. Our family was featured as an example the. (the top left).
 

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affected

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lovely to see you posting - I love that note on the door.
I had a plastic sleeve folder of care stuff for my husband and the first page gave a mission statement to set the tone of how it was his life and home and the importance of dignity. I felt that coming through in your post.

I don't know if stress slows progression, but I do know that you are all making the most of every day you have with your dad and THAT is the best thing ever. Great thread and lovely photos 💗
 

Kristina1

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Thank you for sharing! I'm so happy your dad has this beautiful family centered care setup.
 

KimT

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I do believe stress speeds up progression.

Your father looks very happy and it looks like he has purpose. I think keeping his mind active and his body comfortable goes far toward quality of life.
 

affected

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I do believe stress speeds up progression.
actually I did a typo before! I meant to say - I don't know if reducing stress slows progression. But I would agree that stress can speed progression up. It probably sounds strange, but I don't know that removing stress will slow progression down definitely or we would see this all the time. But just as falls, not enough calories, dehydration etc will speed progression up, we can't guarantee slow progression if you do everything right.

Hope that makes sense, I'm clear somewhere in my head, but not getting it out well :)
 
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