Hello to all. I’ve been pretty busy the last couple of days. I’ve always been a routine person, but now I’m on the ALS routine consisting of eating, sleeping, writing, visitors, and range of motion exercises from my bed in a room of bare brown walls. I don’t need to leave my room to shower or to look out of my window with my binoculars for birds and bunnies. Pretty much the only time I leave is for a house showing, or getting out with Mom. I do go to the next room, Tony’s office, to record what I’m working on for my family on the days I can. The walls are bare because no reason to hang things since selling. Thankfully, I like brown walls.
Yesterday, Matt Ruggles, from 7th Wave Pictures, who I’ll refer to as Matt from now on was here most of the day recording for the documentary. It’s not as easy as it seems to sit and talk about yourself and ALS. It’s hard emotionally, and also remembering and articulating all the facts and things you want to express. Matt was very patient with us. He has the talent of giving a calming effect which makes a huge difference. I hope I did alright. I was told I did, but I don’t take compliments at face value. I do feel confident that if it wasn’t right, Matt would have worked until it was. Tony did great on his solo. There was some other various footage taken and It was a pretty good ALS day for me so that helped too. I feel the day went great. Of course after Matt left I thought of several things I wish I had said. I have to keep in mind this isn’t a one day shoot. There will be time. This will span the rest of my life with ALS. This isn’t so much about me as it is ALS really. This is for ALS to show itself off, my body is just the vehicle it’s using.
If you read my blog regularly, you know I don’t see my house often except upside down being carried out to leave. It was particularly strange sitting in my front room, especially before Matt had all of his equipment out. It almost didn’t feel like home. When thinking of it from my room I still imagine when the kids were here and a lot of activity, kids or grown. In the last several years, usually at least a couple at a time have been back home. I haven’t been down there lately doing my old routine and it felt different. It’s hard to put my finger on it but the life of our house was missing, the part that makes it home. A lot of memories and milestones were made here. The good, bad and the ugly just like any family but all of the memories are precious. The desperation to get to a flat place where I can use my power wheelchair everywhere indoors will keep my mind on the new place that will be called home.
You may wonder why I don’t just leave more often. Besides the difficulty of being carried down and back up the stairs, ALS often leaves me feeling exhausted or dealing with spasticity or cramps. Many days, all I’m up to is the routine above, some days that’s even hard. The exhaustion is a curse and a blessing in a strange way. It really would be more torturous if I felt well and like leaving all the time but was never able to. On rare days I feel an urgency to leave, Tony will get me out. The feeling usually doesn’t last long so we don’t stray too far from home. Usually to a nearby duck pond with some bread, or we’ll go for a short walk/ride and that makes me feel calmer, ready to get back to the safety of my room where everything is set up around my needs.
I wanted to tell a little of what I’ve been up to since my last post, and yes I’m still working on the photo page. It won’t be much longer.
It’s just six days until I go to my next appointment at Emory ALS Center for the Validation of Bio-markers study I’m participating in. That means it’s time for me to focus on staying extra hydrated. Yes, that means the frustration of more bathroom trips but it’s well worth it. It makes the large blood donation and lumbar puncture for cerebral spinal fluid (CSF) go much smoother.
I know I’ve mentioned somewhere that I have the Trilogy 100 Ventilator. I’m going to do a full post about it. I feel it can help someone just reaching that part in progression of needing a little help getting air in and out. I plan that to be my next post, if not it will be soon.
Please visit my website: http://thealsexpress.com
Until next time, take care,