The PSP Chronicles

[daddyt]

Hi I'm Tim... newer here aka daddyt

I'm from small town Ontario, Canada. I'll be turning 60 this September 2016. I'm now into my third year with PSP. I was first diagnosed with early onset dementia. Several months later as other physical symptoms became much more noticeable...vision, gait problems, balance, falls, stiffness... the all too familiar signs that those of us with PSP, spouses, family and caregivers know all too well.

[NannaB]

Welcome Tim, what a lovely photo. It's sad you had to join us but good you can communicate with us all and give those of us who are carers, more of an insight into this debilitating condition.

I'm looking forward to reading more posts from you.

Take care,

Nanna B

X

[daddyt in reply to NannaB]

Thanks for the welcome. I've been following some of the post for some time. I'll post where and when I can. I actually have a blog titled The PSP Chronicles. It's my journal detailing my journey with PSP from the beginning until now. If you're interested and have the time to read, I'll give you the web address: wordpressco900/wordpress.com I began the blog/journal as an attempt to keep my family and friends up to date with my condition as they are scattered about in Canada, US and the UK. I'll forewarn you that it's a bit of a lengthy read (there's close to 50 posts), as I began it nearly a year ago. I tell some of my friends and family who are just starting to follow it, to start from the beginning... first post was Nov 3... scroll sown to the bottom (: To understand where I'm at today, they should know how it all began... as most of them (including my wife and myself) had never heard of PSP until I was diagnosed. I'm sure some of my experiences will mirror what many others have gone through and easily identify with. Oddly enough Nanna B is what my grandchildren call my wife (: Feel free to repost if you can... I'm just not that computer savy ):

[abirke in reply to daddyt]

Yahooo a real online journal! I think I sort of regret not doing that with B...but talking with him about this is hard and getting harder not emotionally so much as physically...though I sure don't want to bring him down with questions he'd rather not try to answer....

So Thankyou Daddyt for doin it yourself! You got to meet LizB

[daddyt in reply to abirke]

My PSW (personal support worker) urged me before she passed away from cancer to journal. I have honoured her wishes, at the same time making my family and friends who scattered about Canada, US and the UK of my difficult journey with PSP. If you're interested in reading the blog/journal I would direct you to the web site: wordpressco900/wordpressco.com. It is a lengthy read at first but it helps you to understand how this all began and where I am today. If you decide that you would like to read it, once you get to the site you'll need to scroll all the way down to the bottom to the first post dated Nov 3rd. I'm quite certain that you recognize and identify with much of what I have written.

[NannaB in reply to daddyt]

I'll definitely check out your blog.

X

[daddyt in reply to NannaB]

It has helped much of my family and many of my friends to under a disease which most people have never heard of (:

[easterncedar]

Hi, Tim! I wrote this under another post, but I'll repeat. I am living in Maine now but call Niagara Falls NY, where I was born and raised, home still. We summered at a family place in Temagami Ont., my favorite spot in the world, of course. I have family and friends scattered about Canada. I know Ontario is big, but I wonder whereabouts you might be from? Peace, easterncedar

[daddyt in reply to easterncedar]

I'm originally from Toronto, but now live in Ayr... just west of Cambridge and south of Kitchener.

[easterncedar in reply to daddyt]

Love Toronto - except for the driving!

[daddyt in reply to easterncedar]

I know what you mean. I had a small restaurant in the Eaton Centre for 13 years and made the insane commute for a long time. No more worries about that or any driving at all for that matter... they took my license away 3 years ago ):

[easterncedar in reply to daddyt]

My mother and a couple of sisters had a small restaurant in Niagara Falls for a few years, after I had gone off to college. I helped some. It's very tough work! Sorry about your license. It was very hard for my guy to give up driving.

[daddyt in reply to easterncedar]

I never would want to be responsible for hurting someone because of my issues. It's the loss of independence and having to rely on others that's difficult to accept.

[abirke]

Sorry to have t welcome you Tim, but welcome I do and that cutie pie of baby girl in the picture. Bruce, my husband was diagnosed in 2013. We found this site I think in 2014....I think....It is wonderful to have people who are on the inside of PSP come here to describe what is happening to them and get some support like we all need. Feel free to ask questions give answers or simply scream here....that's what we are here for....And please please lease feel free to give us in depth experiences with PSP. It was recently discussed by one who was recently diagnosed that they would do the exact opposite of what was expected.....We could really use information to help us know what it is like on the inside...And you most certainly need the camaraderie of a fellow PSPer. If you need help that with getting information, CurePSP.org is a great website it will even send you a packet filled with info that you can give to your family, friends....and dare I say even your medical team who ask, "You have what?" PSPA another great place to go....Yet another great place to go for answers or relief is alittle place I like...the Bible...I often times feel so comforted knowing that my God is watching out for me...So I will leave you with some words that I hope you will find a comfort in the time of need.

AVB

Be of good courage, and he shall strengthen your heart, all you that hope in the Lord. Psalm 31:24

Peace I leave with you, my peace I give unto you: not as the world gives , give I unto you, Let not your heart be troubled, neither let it be afraid. John 14:27

[daddyt in reply to abirke]

Thank you... the Lord and my family are my strength. CurePSP.org is an invaluable resource... I connected with them shortly after receiving my diagnosis, in fact I attended their Canadian Conference back in May-very informative. As for knowing what it's like from the perspective of someone with PSP, I have a blog/journal that I post for my family and friends to read to help them understand what I'm going through while I still have the presence of mind to do so. If you're interested in my story, I would direct you my blog site: wordpressco900/wordpressco.com I'll forewarn you though... it's a bit of a lengthy read. But to really understand where I am today you need to start from the beginning... the first post is Nov. 3rd and I have posted weekly until now. So, if you're interested and you can find some time, please feel free to read and share if you like... it is public forum.

Blessings

[abirke in reply to daddyt]

Thanks I look forward to reading it

[Nanny857]

Hi Tim, glad you have joined this site, but sorry you have PSP. My husband was diagnosed exactly 2 years ago. I too will be reading your blog, thanks for the link. Best wishes, Nanny857

[daddyt]

Glad to be here (:

[Cuttercat]

Dear Tim,

Our story as well. You are in the right place, we will look forward to hearing from you.

Cuttercat

[Kevin_1]

Sorry to be so slow in saying welcome Tim

Sorry you have the need to be here too.

I read quite a bit of your blog... You are a really nice guy!

I hope you'll post here a bit too.

Warmly

Kevin

[jillannf6]

i agree

pep peroso in uK]

ll jill

xxx

[jillannf6 in reply to jillannf6]

sorry bout the typing tim

ll jill

cxxxxx

[daddyt in reply to jillannf6]

No worries. When I post it takes me a great deal of time to compose my thoughts and to even focus on whatever it is that I'm typing... very frustrating.