Nikki, thank you for the suggestion to attend the NEAL CRLI. I am looking into it and hope to attend. I'm being brought into some ALS Association national committee work and getting the 2 day deep dive into clinical research will be invaluable. Right now I'm just doing a lot of reading and listening to try to understand all of the dimensions of research funding, public policy, and lobbying related to ALS. There's a lot to take in. I was at the ALSA National Advocacy Conference in DC last week and that was hugely helpful too.
Ken!
Boy - am I ever glad you posted what you did! I think because i am a slow progressor - it is really messing with my mind. One minute I am waiting for the other shoe to drop, and then I think, 'why waste the time waiting?', then I do some things I liked to do, and I become exhausted -- but yet I still am doing 'pretty well'. Not where I was about 6 months prior to diagnosis. But it really, really is on my mind almost 24/7 (plus with the fasiculations that I can feel, and the ones I see and cannot feel) - it's always a reminder.
I'm actually seeing a neuro-psychiatrist tomorrow (Monday) who specializes in psychological issues with people who have diseases like ALS, etc. I'm nervous to go - and yet I need to figure this out. The slow progression, is truly messing with my head. Yet, I am SO, VERY GRATEFUL that I am a slow progressor and can be a voice to those who are not. I feel I can do 'better work' for those who need to be heard, once I get my head wrapped around this.
Ken, when I was first diagnosed, I had dropped about 40 pounds, my neck was hard to hold up, my one leg was atrophied more than my right -- and I didn't think I had much time. I had a large-ish home and couldn't figure out why I couldn't keep up with it as much as I once had. I am divorced and my children are gone. After receiving the news, I ended up selling my home, because there were a lot of steps and a large yard to mow and driveway to shovel. I also actually purchased a plot for my cremains, and filled out a living will, made sure my life insurance was in line, went through all of my 'memory boxes' for my children and organized them so they can have them at a later time. I was convinced that I didn't have much time, so I did get a LOT in order.
Once I started PT, got a J tube so that I could get better nutrition, I feel that I plateaued. And it is THIS that is messing with my mind. My physical therapist told me that the certain exercises she gives me will strengthen the muscles that still have connections and will compensate for the ones that don't and she expected me to get stronger or have a slower decline. So far, she is right. I HAVE to listen to my body, I HAVE to do my tube feeds and I HAVE to get plenty of sleep and naps.
I am thankful that you had mentioned that slow progression does something to your mind. If I could hug you, I would. Again -- I don't want ANYONE to think that I'm not grateful that my progression is slow. I am! But the trade off is the mental games and watching things slowly decline/plateau knowing that 'it's coming'. I think that anyone who is given this diagnosis has struggles of one kind or another. Once I'm in a better mental space and am able to take my mind off of 'me' - I want to do more for those who are in a steeper decline.
Thank you, Ken. I thought I was the only one who felt like this. I felt foolish about doing the voice banking - but now would be the time. That is another thing; because of the slow decline, I have postponed certain things that I do need to attend to. Like the voice banking, possibly moving in with my sister when I become less able to care for myself. BUT I must say that taking care of your finances now while you are still making sensible decisions would be THE thing to do. It really did ease my mind.
Again - thank you, Ken!
(sorry this is so long!)