worrieddaughter77
Active member
- Joined
- Oct 6, 2017
- Messages
- 95
- Reason
- Loved one DX
- Diagnosis
- 10/2017
- Country
- US
- State
- IL
- City
- Oulu
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
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