Hello, all. Patient here. I’ve been wanting to write this post for some time, but I haven’t known how to open this conversation.
I’ve decided to let PSP run it’s natural course and to live the rest of my life in the most meaningful way I can, without puréeing my foods or installing a feeding tube or learning to “talk” using my eyes with an iPad app that allows me to pick out words to communicate, all of which clinicians are saying are necessary now or in my near future. I’m going to eat all the chocolate or taco salad I want , understanding that aspiration pneumonia or a septic UTI will probably do me in sooner rather than later.
This is as we all know a natural disease that can’t be stopped. While the overwhelming number of you have lived from one disaster to the next for years while losing the person you love to this cruel disease I simply can’t do that.
The hard fact is that the medical community can’t help this. They can only measure my decline. I have access to the notes from the neurology and therapy group I see and although they don’t tell me, tests have shown I choke and things get into my larynx, that my breathing capacity has dropped from 94 percent to 74 percent in the last 3 months, and because I have a bad reaction to muscle relaxers they can’t do a whole lot to loosen my tight muscles. I coughed so hard eating a bite of cake last month I tore a hole in my cornea. The cold hard fact is they can’t get my functionality back, they can only try to keep it where it is, with full knowledge that this disease will win.
I’m 65 years old and I’ve had an incredible life. I’ve hiked in the Andes with a shaman, sledded on my belly 10 kilometers down one of the Alps above Davos, been on top of glaciers and into ice caves in Iceland, seen India up close, walked the rainforest in Costa Rica, ridden on the Concorde (you can see the curve of the earth up there), been in the Rockies and lived at the end of a dirt road at the top of a mountain in NE Georgia with bears, deer, foxes and even a bobcat wandering on their trails through my part of the forest. I speak or read 3 foreign languages including russian.
I have no bucket list. My life has been a never ending choice to take the road less travelled. I like to say I’ve lived 75 good years even though I’m only 65.
My doctors all accept my choice. I’ve spoken to my family doc about hospice but because I get kidney stones that need to be removed to stop deep and lasting pain, I won’t sign up with hospice until the last days. Hospice would drown me in pain meds, and I want to have a chance at clearheadedness and closure until the last moment.
I’ll be moving in with my daughter soon, and she has been with me every step of this. You might remember we took a trip to New York City over thanksgiving and we’re both super grateful for the memories we made. She’s working hard to come up with another short trip we could take given my disabilities.
I’m not “giving up.” I’m giving in to a natural process. With no regrets.
I’m not quitting this forum or the US forum I’m on. I need to know I can add the patient’s perspective to your caregiver issues. It’s been really satisfying helping everyone get a glimpse into a patient’s mind, concerns and driving forces. I thank you for that.
With much love to you all,
Kyle
Giving up
Hospice experiences
