- Joined
- Feb 14, 2018
- Messages
- 236
- Reason
- PALS
- Diagnosis
- 10/2017
- Country
- US
- State
- PA
- City
- Zelienople
Hi, Folks. My name is Bill; I'm a new PALS, diagnosed in October, 2017, and also new to the forum. As I looked at some of the threads, I was impressed by the courage and compassion of the members here and wanted to introduce myself to the group.
My experience started with foot drop in the Spring of 2017, followed by ortho and neuro consults, EMG and nerve conduction studies, and the ALS diagnosis. I feel fortunate that I was diagnosed relatively quickly compared to what some others have had to go through.
I am using AFOs to help with the foot drop, and have found that hiking poles help when walking around the neighborhood, both with balance and by taking some strain off my legs. I can still do stairs, slowly, but can't carry much of anything up them.
I started Radicava infusions in early December and have been through five cycles, with minimal/no side effects. I am very grateful that my wife, who is my CALS, is able to administer the infusions at home which greatly reduces the time and effort required.
I identified with some recent posts from people who still question the diagnosis, even though they are far enough along with the disease to know it is ALS. I think in a way my mind is trying to protect me from all the harsh reality. As they say, "Denial is not just a river in Egypt." 8) I don't look forward to the unpleasant later stages, but as I mentioned, I'm inspired by the courage of the folks here.
Best to all,
Bill
My experience started with foot drop in the Spring of 2017, followed by ortho and neuro consults, EMG and nerve conduction studies, and the ALS diagnosis. I feel fortunate that I was diagnosed relatively quickly compared to what some others have had to go through.
I am using AFOs to help with the foot drop, and have found that hiking poles help when walking around the neighborhood, both with balance and by taking some strain off my legs. I can still do stairs, slowly, but can't carry much of anything up them.
I started Radicava infusions in early December and have been through five cycles, with minimal/no side effects. I am very grateful that my wife, who is my CALS, is able to administer the infusions at home which greatly reduces the time and effort required.
I identified with some recent posts from people who still question the diagnosis, even though they are far enough along with the disease to know it is ALS. I think in a way my mind is trying to protect me from all the harsh reality. As they say, "Denial is not just a river in Egypt." 8) I don't look forward to the unpleasant later stages, but as I mentioned, I'm inspired by the courage of the folks here.
Best to all,
Bill