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
Written by
Kayelless
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K, this is a horrendous disease and I totally respect your position.
You gotta do what is right for you and you seem like an awfully strong person who knows what is right for themselves. I wish you luck, peace and as little pain as possible on your journey. I think Bob Dylan was writing about people like you when he wrote this song:
What a brave and wonderful lady you are! I wish I could give you a big hug! Only you know truly what you are going through so you must do right for yourself. Hats off to you. This disease is truly horrendous. I'm glad that you have so many things to look back on. And may you and your daughter create more wonderful memories together! Lots of hugs and love to you. 🌹
Your message really moved me with it's dignity and courage. I can't begin to imagine what it must be like to be the patient with PSP. I often wondered about this when I was caring for my husband before he passed away. Like you, there were no interventions beyond various physical therapies over the years to keep him as strong and mobile as possible for as long as possible. When the time came, he simply took to his bed where, with the invaluable help of a palliative care specialist, we kept him comfortable, surrounded him with love and care and let him leave on his journey in his own time. Sometimes its in the moments of stillness that we truly experience life, rather than the frenetic running around we all tend to do too much of the time.
Your life sounds like it has been wonderful and adventurous and full. You've clearly chosen the road you wished to travel so far and why should this next part be any different? I wish you more wonderful memories with your daughter and much meaning in your life. xx
K, while I have been reading this site for several months, this is my first post. My sister-in-law who lives in France cued me into this very informative and helpful thread. First, and most importantly, enjoy your continued journey. My wife was diagnosed with MCI about two years ago. At that point the docs said no big deal come back in a year. Six months later I was a full-time caregiver, and it took another year (and a change in neurologist) for the diagnosis of PSP. She can now only walk with my assistance and sleeps a lot. We live in the States and in your post you mentioned a US forum. I would appreciate to know the link to that forum. Best wishes to everyone who is on this forum. This disease is insidious, but, even so, we need to try to continue our life, whether patient or caregiver, as best we can. I'm doing so so in this effort, but getting better at it.
What a wonderful, exciting life you have been blessed to live. I am so glad you have all of these memories on which to reflect. My husband and I reflect each day on one precious memory or another. It always brings a smile to his face and sometimes laughter as we remember our sweet times together. Each day I treasure his laughter even more. I am sure your daughter feels the same. You mention a US forum. Would you be so kind as to give me the information on that so that I may join it?
It is my prayer you live out your final days with joy in your heart and a smile on your face. The best is yet to come once we take our final breath and are free of our disease ridden bodies and dwell I. The house of the Lord forever! May God bless you.
Kayeless - You're not giving up... you're just taking a pass. There is no judgement here, only support and understanding. From what I read, you have lived a life many have only dreamed of. That, in and of itself, is a blessing. You have taken the road less travelled until now. Why should the rest of your journey be any different? Kudos to you for doing it your way. May the rest of your time be filled with peace, love, light, chocolate... and ice cream too.
Thanks everyone. It’s wonderful to see you support my right to make a decision that works for me, even if it’s not the one you’d make for yourself.
I forgot to say in yesterday’s post that I’ve planned to have my ashes SPREAD IN SPACE when the time comes. There’s a UK company that uses a helium balloon and an auto-release canister to float “passengers’” ashes up 100,000 feet to near space and releases them to float down across the globe to fertilize the earth as it goes by below. It costs just $3,500 dollars (funerals in the US average $10,000). There are cameras attached to the canister, one pointing down and one aimed at the canister and a view of the atmosphere, that record the entire process and the full video is available in about a week.
Some small particles of ash are likely to stay afloat for awhile and it’ll allow my daughter to just look up anytime she needs to talk. And I love that.
The canister is tracked and retrieved after the “flight.”
What a lovely post and so inspiring. Your courage is really coming through. We have made the same decisions for my Dad. He is many things, but I would not have ever in my life described him as courageous, and now its the quality I never saw before. All the best.
Absolutely right. My husband also felt it import to make his own decisions .You've had so many experiences. Well done. You are facing reality. I'm supporting you in this. Love Jean xxx
Kayelless, such strength. I am glad to hear you are moving in with your daughter. Your perspective is so very important and needed. I hope you contribute as long as you can.My husband John passed in 2020 and unfortunately he remained very quiet about his feelings. I do know if I said "oh, that's my PSP John talking" or "there's MY John", he would smile as if he was happy I still remembered who he was and could tell the difference. We never gave up either, but we adapted as needed. Just as I am learning now to adapt to the grief. John and I learned to live for the day and realized we could still jitterbug with a wheelchair! Wishing you strength and courage on your journey. Alice
What a positive, adventurous and fulfilling life you have lived!! You have really made the most of the time you have been given. I totally understand your attitude to PSP and your need to approach with the same attitude you have always done to everything in your blessed life.
Go you!!! I salute your bravery, positivity and philosophical acceptance. X
What an amazing person you are, Kayelless and what a wonderful life you have lived. God bless you and thank you for your perspective on how you are dealing with this disease. It is much appreciated. 🤗
You are a brave person and I fully understand your decisions. Do please keep contributing to this forum as we can never have enough of the patient's perspective here.
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PSP and pain//jaw lock
Traumatized by psp!!!!
PSP - progressing right along
