The PSP Chronicles... Memories of Mike

[daddyt]

Hope everyone is doing well, considering our circumstances.

wordpressco900.wordpress.co...

[easterncedar]

Dear Tim,

I am very sorry for the loss of your friend. I won't be hasty in reading your blog. I began it and have to pause now, to read more tomorrow. I am very moved by your story, and impressed by your ability to share so simply, clearly and honestly such complicated emotions and thoughts. Thank you. I love the pictures, too. Love and peace, Sarah

[daddyt in reply to easterncedar]

Thank you Sarah. It has been a difficult couple of weeks. I understand and have accepted that PSP is a terminal disease. Mike and I were each other's personal support and I felt and hoped that we could "dodge the bullet". His passing helps to remind me of this reality, but it also strengthens my resolve to continue fighting for all of the others including your beloved who have completed the journey and those who fighting now.

[easterncedar in reply to daddyt]

Thank you, Tim. You continue to be inspirational to me.

[Marie_14]

Dear Tim

I am so very sorry about Mike. It felt like I knew him because of you. I have looked at the photo's and read a lot of the email between you both. Have had a break for now though.

I didn't really want to read your post because I knew it would be bad news about Mike and I know how precious your friendship was to you. So please firgive me for taking this long to do it.

Please don't feel guilty that you have outlived your pal. He would hate that. He would want you to fight this awful thing as long as you can. He would have done if it had been the other way around.

Thank you for telling us about Mike too (even if it has taken me this long to read it). Your emails are great and Mike was really special I have already realised that. He had an Irish surname so he had to be?!!

Both of you are special people who found each other by chance. Or maybe not by chance Tim?

Lots of love and hugs to you and your family.

Marie x

[daddyt in reply to Marie_14]

Sweeney is definitely an Irish name and no worries about responding. You're right... he or we would do anything for each other, I'm so glad that others in our PSP family got to know him a little, you'll learn more about him in my future writings. Not by chance... by divine design I'm certain.

Lots of love and hugs to your family too.

Tim x

[Marie_14 in reply to daddyt]

Tim

I meant to ask how you are at present? Very remiss of me not to ask. I was very much thinking of how you must be feeling after the loss of Mike, and it is a real loss I know that. I never asked how you are apart from that however.

Hope you are still doing the yard work? By the way something which always strikes me as odd. People with PSP and other terminal illnesses are given antidepressants as though it is part of the condition. Well I suppose it is in a way but people who don't feel depressed must be few and far between? It would be very unusual not to be depressed? Whether it is caused by PSP or whether it is knowing there is no cure? I tend to think it must be the latter.

Marie x

[daddyt in reply to Marie_14]

I'm doing okay at the moment, I know this can change at any time. My rigidity has increased... up to a 7 on most days. The movement disorders specialist has increased my dosage on Siminet (levo-card) which has seemed to helped a bit... back to a 6ish. Fortunately for me, I'm in that 1/3 group where that some medications helps to manage the bradykinesia, but for how long? I have a neuropsychiatrist (whom I'm seeing later this morning) manage the anti depressant meds. Mood swings, anxiety, anxiousness, are definitely attributed to PSP. He actually demonstrated to my wife and I through diagnostic imaging what it is physiologically, actually going on in the brain what and why it causes depression. And yes... knowing there is no cure doesn't help matters, but that's why we have hope. I keeping praying for an effective treatment... at best.

Tim x

[Marie_14]

Same here Tim! We need something to help all the people with it. I am glad he explained to you what actually happens. We had no idea. You may have gathered that by now? ☺. Garry only saw the Neurologist three times and nobody else apart from the SALT woman. I had to threaten the hospital to get her to visit!!

I am glad that the tablets are working if not 100%. Garry was on Sinemet but he might as well have had sweets! At least he would have enjoyed them?!

Love and hugs Tim.

Marie x