krnNdug
Distinguished member
- Joined
- May 18, 2014
- Messages
- 270
- Reason
- PALS
- Diagnosis
- 02/2014
- Country
- US
- State
- AZ
- City
- Gilbert
Sorry for the rant in advance. I am frustrated with this ALS. We have had many blessings and support since I was diagnosed but it seems as though we are just barely treading water.
When we were told we were going to need a handicap van we were very thankful my grandmother had the van she and my grandfather used and she gave it to me. Now that I got my new Quantum (I need split legs rests for my spinal cord damage) it is to tall for the van. I sit with my head bent over and I am told I could break my neck if we hit a good sized bump. Maybe not a bad way to go, but not a way I want to go since my wife would be driving and feel so guilty.
We thought we were going to need to move because of the bathroom situation, well, my old baseball coach did a fundraiser and it has been covered. Now to get it done, but where do I go when it is out of commission. I can't use the 2 upstairs and I hate being dirty and what about using toilet.
I am sure we will figure it all out, but wanted to let it out a bit. As I said, overall it has been a very supportive time. Will I be saying that in a year or two? I think so, but with an eye gaze probably. And I know my wife/caregiver has it a lot tougher than me so why am I complaining!
I don't know if these posts are allowed here or not or where to put them. I know many have a lot worse problems & situations than me and I don't want to make mine seem bad, they are not compared to many out there. I am probably a lot better off than many and my heart hurts for those who don't have resources to "live" while die-ing with this disease.
Thanks for your patience.
Doug
When we were told we were going to need a handicap van we were very thankful my grandmother had the van she and my grandfather used and she gave it to me. Now that I got my new Quantum (I need split legs rests for my spinal cord damage) it is to tall for the van. I sit with my head bent over and I am told I could break my neck if we hit a good sized bump. Maybe not a bad way to go, but not a way I want to go since my wife would be driving and feel so guilty.
We thought we were going to need to move because of the bathroom situation, well, my old baseball coach did a fundraiser and it has been covered. Now to get it done, but where do I go when it is out of commission. I can't use the 2 upstairs and I hate being dirty and what about using toilet.
I am sure we will figure it all out, but wanted to let it out a bit. As I said, overall it has been a very supportive time. Will I be saying that in a year or two? I think so, but with an eye gaze probably. And I know my wife/caregiver has it a lot tougher than me so why am I complaining!
I don't know if these posts are allowed here or not or where to put them. I know many have a lot worse problems & situations than me and I don't want to make mine seem bad, they are not compared to many out there. I am probably a lot better off than many and my heart hurts for those who don't have resources to "live" while die-ing with this disease.
Thanks for your patience.
Doug