Bad Balance
Senior member
- Joined
- Dec 10, 2010
- Messages
- 815
- Reason
- PALS
- Diagnosis
- 12/2010
- Country
- US
- State
- GA
- City
- Atlanta
So far my limited experience has shown that one of the most difficult questions to ask your ALS doctor is: "How much longer do I have?"
I believe that this must also be a difficult question to answer sincerely without many evasions and generalizations; especially since with a trach and vent, theoretically the answer is not possible.
My Doctor is a very compasionate person. The closest he has answered is to say that since the progression is linear, you can find points on a timeline and then make some projections. With only two clinic visits, this is not yet a very exact thing yet for me.
The closest I have come is to do a schedule on a calendar. In my past professional life I am used to doing this for construction events, so I am familiar with charting my time in this fashion.
Basically, I took the first remembered onset of symtoms ...subjective and inexact; as about a year. Then I tried to look at where my legs are in terms of current use effectivness vs. non-useable or ineffective. This first milestone is an attempt to look at when I will be into a wheel chair. By looking at the % of progress to this milestone verses the one year of time to reach current status; I made some projections based upon hearing that I may be more towards the PLS side of the disease. Very inexact; and it will change as more time passes, but it did give me some planning information in regard to: "if I want to make this or that trip or do this event, I had best do it by this point in time".
In this regard, I hated going to the clinic. But; a dose of reality makes for more clear vision I guess. Just some rambling thoughts that I thought I would share.
I believe that this must also be a difficult question to answer sincerely without many evasions and generalizations; especially since with a trach and vent, theoretically the answer is not possible.
My Doctor is a very compasionate person. The closest he has answered is to say that since the progression is linear, you can find points on a timeline and then make some projections. With only two clinic visits, this is not yet a very exact thing yet for me.
The closest I have come is to do a schedule on a calendar. In my past professional life I am used to doing this for construction events, so I am familiar with charting my time in this fashion.
Basically, I took the first remembered onset of symtoms ...subjective and inexact; as about a year. Then I tried to look at where my legs are in terms of current use effectivness vs. non-useable or ineffective. This first milestone is an attempt to look at when I will be into a wheel chair. By looking at the % of progress to this milestone verses the one year of time to reach current status; I made some projections based upon hearing that I may be more towards the PLS side of the disease. Very inexact; and it will change as more time passes, but it did give me some planning information in regard to: "if I want to make this or that trip or do this event, I had best do it by this point in time".
In this regard, I hated going to the clinic. But; a dose of reality makes for more clear vision I guess. Just some rambling thoughts that I thought I would share.