Tedstehr
Distinguished member
- Joined
- Aug 25, 2017
- Messages
- 199
- Reason
- PALS
- Diagnosis
- 08/2017
- Country
- CA
- State
- BC
- City
- New Westminster
Hello to old friends and new. I stopped posting on the forum for a while and then stopped reading. Not sure why. Maybe fear or denial? I eventually found myself not able to do either without help from someone else. I now have an eyegaze computer.
I hope I can share my experiences with some of the newer people so they don't make the same mistakes as I have.
Denial.
Shortly after my diagnosis a friend from work told me about someone who has a very slow progression. I decided I had a very slow progression too, regardless of mounting evidence to the contrary. When I spoke to others with ALS I thought myself unlike them and that my story would be vastly different than theirs.
This dogged refusal to accept the truth made others believe I was handling things incredibly well. I suppose it worked until it didn't. Then things crashed around me and I felt frightened and embarrassed. Now I have come to grips with my remaining time. I hope I have a more healthy attitude. I should have hoped for the best and prepared for the worst.
Progression.
I spent too much time worrying about my progression (even though I was wrong about it. ) I should have thought more about those around me who love me and who I love. I should have pushed the limits of what I could do at the time to make the most quality time with my family. And I tried so hard to evaluate if all the drugs and supplements I tried were affecting my progression. The simple truth is unless they are making a radical difference it is impossible to know.
I also thought I wouldn't need things like an eyegaze computer or a sling/hoist until I was lying in bed unable to move. You will need an eyegaze as soon as can't use your hands or arms. And you will need a sling when you lose a certain amount of function in your legs. This may be obvious to others but I don't always have a lightning grasp of the obvious.
Cause.
When you are first diagnosed you search for a cause. Did I cause this? Am I still causing it? If I stop whatever it is can I cure myself? Sorry, but it is also impossible to know. It dawned on me that I was diagnosed at 55, the average age of diagnosis. It must be more than just exposure to a specific group of substances or people would get it any age, depending on when they were exposed. The best I heard (for something else) was genetics loads the gun, and environment pulls the trigger. ALS would appear to have a pretty diverse selection of triggers. If it was easy for one person to figure out science would definitely have an answer.
We all go through our own mental and physical struggles. My mental struggles may be unique to me. Regardless, I hope this can help others in some way.
I hope I can share my experiences with some of the newer people so they don't make the same mistakes as I have.
Denial.
Shortly after my diagnosis a friend from work told me about someone who has a very slow progression. I decided I had a very slow progression too, regardless of mounting evidence to the contrary. When I spoke to others with ALS I thought myself unlike them and that my story would be vastly different than theirs.
This dogged refusal to accept the truth made others believe I was handling things incredibly well. I suppose it worked until it didn't. Then things crashed around me and I felt frightened and embarrassed. Now I have come to grips with my remaining time. I hope I have a more healthy attitude. I should have hoped for the best and prepared for the worst.
Progression.
I spent too much time worrying about my progression (even though I was wrong about it. ) I should have thought more about those around me who love me and who I love. I should have pushed the limits of what I could do at the time to make the most quality time with my family. And I tried so hard to evaluate if all the drugs and supplements I tried were affecting my progression. The simple truth is unless they are making a radical difference it is impossible to know.
I also thought I wouldn't need things like an eyegaze computer or a sling/hoist until I was lying in bed unable to move. You will need an eyegaze as soon as can't use your hands or arms. And you will need a sling when you lose a certain amount of function in your legs. This may be obvious to others but I don't always have a lightning grasp of the obvious.
Cause.
When you are first diagnosed you search for a cause. Did I cause this? Am I still causing it? If I stop whatever it is can I cure myself? Sorry, but it is also impossible to know. It dawned on me that I was diagnosed at 55, the average age of diagnosis. It must be more than just exposure to a specific group of substances or people would get it any age, depending on when they were exposed. The best I heard (for something else) was genetics loads the gun, and environment pulls the trigger. ALS would appear to have a pretty diverse selection of triggers. If it was easy for one person to figure out science would definitely have an answer.
We all go through our own mental and physical struggles. My mental struggles may be unique to me. Regardless, I hope this can help others in some way.
