This week has gone by fast. I’m thankful because it has not been a nice one. I had some website issues that have been finally taken care of. On top of that I’ve had lots of muscle cramping going on and my left knee and ankle hurt from scooting myself around in my transfer chair with that leg. I need to keep that leg strong because it makes transfers much easier, and it’s how I push myself up in the bed. I never in my life had a problem staying upright while leaning back on pillows, the main one is specifically designed to sit up and lean back. Still, it doesn’t take long before I’m somehow close to being flat on my back. If not for my strong left leg I wouldn’t be able to push myself back up.
My one sided ALS progression is keeping me independent longer. I’m right handed, but I’ve become used to doing most things with my left arm/hand. I can tell I’m getting weaker on my left side. Completely different from my right, the whole left side seems to be declining all at once, that will probably change. My right side was moving from bottom to top and top to bottom, seemingly in a race. My right leg won, or lost, depending on how you look at it. It went piece by piece. I try not to use it at all except for range of motion exercises. I want what is there to stay in case I have to prove again I can make it across a room. It must be a sight. I don’t care though, the only thing that matters is if I do it.
I have a few things hanging in the balance that will determine how I move forward in dealing with ALS. That in itself is stressful. I’ll write about things as they unfold. Writing helps with my stress, and I’m inspired to keep doing it because of messages I’ve received from readers. I do have my days of not wanting to write anything, some days I’ll feel better if I do. Other days I’m just feeling too bad and it’s best I don’t try to force a post.
I have to remind myself that this blog is mainly for the purpose of following a life and death through the decline of ALS. This blog will cover a lot of ground in my experience with ALS. I will continue until the end. It’s something my family will always have as a timeline. Importantly to me, I want this to help and inform others diagnosed with ALS and their caregivers. If I make a mistake with something, maybe I will save others from the same. If I come up with something helpful to me maybe others will benefit from it also.
Blogging is something I would never do if not for ALS. I’m way to private of a person. I say this often: ALS changes everything! I never imagined I would want anything about me filmed. Now I’m in the process of filming my life and death with ALS. Just like I want my blog truthful, the documentary will be the same way. I want ALS to be seen for what it really is and what is does to people and their families. The best I can explain this documentary is more like a behind the scenes look.
Real life after the interview and the stoic face of faith and acceptance that is often shown. These interviews have helped and I thank everyone who does anything to raise awareness. It’s just that I know what has to be done when the cameras are off and the person is back behind closed doors. That’s where cameras will follows me most. That’s where ALS shows itself and the desperation, frustration and anger it causes. The stress a marriage endures. The process of making hard decisions, the many devises and equipment keeping me mobile and maybe alive and shown how it’s used. The process of bathing at different stages of progression as well as using the restroom, communication difficulties, the changes it makes to a persons body, and how ALS makes it hard to be yourself. It changes others’ perception of you because it changes how you look and your ability to express and move like yourself. Even if you feel like yourself it reaches a point of not really being able to express it. Your body is no longer your own. You at least don’t have control over it, ALS does.
My Respiratory Therapist, Wendy, came yesterday. She tweaked my ventilator AVAPS setting. It’s amazing how this setting on the Trilogy 100 helps me breathe but yet it follows my lead so well. There is no trying to sync my breath with it, The Trilogy 100 does all the work and syncs to me. This is completely unlike my experience with the BIPAP setting. She has a sip and puff ordered. That’s probably the wrong terminology, but that’s what I hear it called, not to be confused with the sip and puff technology used for people without enough hand control to drive their power wheelchairs. I won’t get into that because I haven’t reached that point and it may never be right for me depending on my progression. There are other options to drive your chair if/when you can no longer use your hands.
I’m looking forward to the ventilator adaption. I can use it where I spend the majority of my time. Right here in my bed, when I take a ride outside in my power wheelchair, or when we leave with my manual wheelchair. It will have a hard plastic mouthpiece connected to my usual tubing. I can set it up so I can turn my head and take in air when I feel I need it. Sometimes I just need a few good breaths. With this I won’t have to deal with a mask at all. I’ll just take a sip of air as needed. When I need longer, it will be easy to switch back to my nasal mask. I will post pictures when I have it.
My Respiratory Therapist is very nice. She’s always cheerful and patient and she takes her time when changing my settings to get them just right for me. We chat and I’ve mentioned how I wish my chin strap was a more feminine color. She called last night and told Tony she is going to dye one a pink color for me. That brought a smile. There are good people that you get to meet because of ALS. I will share the good in my blog, and documentary too. Sadly, there will be more difficult things to read and see, but I want the kindness of people to be seen too because they are so important to quality of life. She is a very busy person covering a large area. This is something she just wanted to do for me. I appreciate the fact that she is doing it more than actually having it. It shows caring from a professional. It’s a nice feeling.
She also brought me two other pieces of equipment that was prescribed at my last clinic visit. A cough assist machine and a suction machine. Right now I don’t need them constantly. I do feel a sense of relief knowing they are here since I’ve had times of needing them. One very scary time. Now they are here and we’ve been shown how to use them.
I’ll probably talk more about them in my next post or real soon. I’ll show pictures too.
Until next time, take care,
This article was written by April