Following up on PSP?

[johns65]

Just curious if any of you caregivers are following the journey of PSP with a daily diary? I've written down things on lots of pieces of paper when I hear something of interest and wondered if it should be in book form. Just wondering here in Minnesota. Joyce

[enjoysalud]

my son, died May 4, 2017, at barely age 55 of PSP.

I kept an erratic journal of my son.....starting Feb 5, 2015. His first symptoms (slurred speech and DOUBLE VISION) were March, 2014. He was DX Jan, 2015 with Parkinsons. Jan 2017 he was re-DX with PSP.

It helps today as I grieve, and was helpful for discussions with doctors.

Looking back, I wish I had done daily entries.

I think a daily journal would be helpful.

[johns65 in reply to enjoysalud]

Okay, I think I will put my notes in order and then put them into a book. They will be all in one place then for future reference. Thanks for the support. Hope your day is going good. I think the Vikings will win today's game, just for us who live in Minnesota. Ha. Joyce

[enjoysalud in reply to johns65]

I am not a sports enthusiast and grateful that I live in sunny Los Angeles. It's 55 degree here.......brrrrrrrrrrrrr.

Here is a sample entry in my erratic journal, dated Feb 21, 2015, Sat......... "Today Jeff's posture was near perfect. Still a little stiff when turning....instead of turning his neck, turns a bit of body too. Jeff's voice still a bit slurry. I did an hour walk with Jeff. Voice goes in and out on normalcy. This last week his schedule VERY full.....faculty meetings, band practice, student parent conferences, staff LAUSD Inservice".

[rriddle]

A daily journal is a great idea!

[Christine47]

Yes When we first went to the neurologist I started it (2012). Entries were not necessarily daily, just significant changes. I give her a copy.

[allotmentartist]

I have made notes since my husband started being poorly not every day though it just helps when you have to look back to check on appointments etc .I have a goldfish memory x

[Suebatt]

Hi

Yes I’ve kept a daily record in my diary since late 2014 and it helps when I have to refer back for anything

Take care

Sue x

[NanBabs]

Really good idea to keep a daily record, you never know when you may need to refer to it.

xx

[raincitygirl]

I've been keeping a journal - not daily, but as little changes occur. I take it to the Neurologist and other medical apptmts. It also just helps me get a perspective.

[aliciamq]

I write every day in a notebook. I keep research notes - ideas from everywhere, many from here!!!!! I have a journal of letters to my husband - "Dear Jack". I have a "Dear Jack" private facebook page for just my three children. I thought I would open it to our numerous brothers and sisters at some point , but for now I am enjoying the intimacy with my adult children. It gives me an opportunity to reflect on anything and everything and share daily stuff like grocery store adventures😆

[aliciamq]

What have you found of interest, lately?

[johns65]

Aliciamq,. After seeing Jim At the nursing home at noon today and what he said to me as I walked in the door, I am not sure if I want to put this in my diary. He said he had a new name for me.......Bitch.....I was crushed. He has been saying ver nasty things to me lately. This is something I cannot share with my family or friends but I can with all of you on this forum. Thanks for letting me rant and rave from Minnesota where we received 17 inches of snow Mo day. Joyce

[LuisRodicioRodicio]

Hi Joyce !

I have not made a diary but I have collected by dates the milestones or relevant facts of the course of the disease.

Hug.

Luis