Long Post... again

[daddyt]

Okay my PSP fam-jam, let me first say thank you for all the supportive comments in response to the post below. I've picked myself up and dusted myself off. All in the group know how PSP can mess with the mind as well as the body... I'm no exception.

I hope everyone has had a chance to view group member Elvira Graham's short video clip on a PSP documentary she has poured her heart into. She references the success of the Ice Bucket Challenge for ALS... as did I. You would be hard-pressed now to find someone who hasn't heard of ALS... including medical professionals. Ask these same people if they know what PSP is - we all know the answer to the question. Kudos to Elvira Graham for her work. Lets work together to erase this unawareness, to the point where PSP is as well known as ALS... in name at least.

I'm tossing an idea around for a cookbook fundraiser for PSP. I would be looking for family favourite recipes for soups, stews and smoothies that can be made for loved ones and members on the journey experiencing swallowing issues (Dysphasia). In my first kick at Life's Can , I was a restauranteur - manager, chef and have a number of my own favourite recipes I would contribute. If you have something you would like to contribute you can message me, be sure to leave your name and where you're from to ensure you receive credit for your recipes. You can also post your family favourites under comments on my book's website timbrownauthor.com

Tim Brown

January 17 at 8:06 PM

I’ve been feeling blah… apathetic, bundled with a heaping share of pain and stiffness over the last few days. I sit here in my chair with my laptop in my man cave I call the cottage in small rural town Ontario, Canada… my little corner in a great big world. My mind never seems to rest as I try to conceive ways to raise awareness and financial support for rare brain disease PSP, CBD and MSA. These diseases have no treatment or cure with a terminal prognosis and affect people around the world.

I don’t have the means, the media connections and networks to let the world know… hey–we’re here, don’t forget about us. We count too. It doesn’t mean I don’t try… I wrote a book (the only book written from a patient’s perspective) with plans for additional volumes inviting readers to join me and share my journey with PSP, advocating and giving voice to others and their loved ones on the same journey. Donated proceeds from book sales go directly back to the PSP cause–Cure PSP and the PSPA. When I can, I paint–Painting for PSP… again proceeds to PSP.

I have come up a three-part YouTube video (The PSP Triple Crown) challenge as fundraiser and awareness campaign with the hopes of it going viral. I don’t expect everyone to participate, but I do want them to know what PSP is. The Ice Bucket Challenge for ALS, which is in the same family of Parkinsonism as PSP, CBD and MSA, was hugely successful. At the very least, I hoped it would be widely shared on social media. It takes nothing to click on the Share Button. From the beginning of September 2018 to date, the video has received 819 views, 754 of those views were a direct result of my son and daughter-in-law sharing with their extensive network of friends on FB. Some might say this sounds like sour grapes… nah, but the lemon and lime in the Pucker Up for PSP portion of the challenge sure were.

One of the many casualties of PSP has been my personality/demeanour. Empathy has been replaced with apathy… loss of interest or, as I have referred to in my book DGAD–don’t give a damn. Admittedly, it gets the best of me some days… today might be one of them.

[greelycat]

Tim, I knew when we didn't hear from you for awhile that you were either really down or brainstorming something. Maybe a bit of both?

My boys (ok adult, almost middle-aged sons) both work for well known restaurants. Maybe I can get some excitement and participation going there.

When Josh and I did the obit he told me to use the full wording for PSP so that people came to recognize it, apparently PSP stands for something else in the gaming world. I wonder if anyone else has experienced the same problem I had with explaining PSP. Everyone would say, "oh, it's a Parkinsons thing". Not to diminish Parkinson's, but we all know PSP is different. And a lot of us, especially in the beginning, don't know how to explain how devestating PSP is.

I think part of raising awareness is to differentiate from a disorder that takes two decades to progress, to one that takes one third of that, among other differences.

Also, I think you and Mottsie should

[greelycat in reply to greelycat]

cont'd (my laptop gets weird and does it's own thing sometimes)

Also, I think you and Mottsie should consider selling your artwork (put the canvas to use people) b ecause I would buy it!

[daddyt in reply to greelycat]

Paintings for PSP is another one of my fundraising projects.

Tim

[Hidden in reply to greelycat]

Greelycat is so sweet but l don't think my wallart would qualify... it was painted before mom was diagnosed with PSP.

I have seen other lovely paintings on this site by folks with PSP. Now l think those would be lovely included in the PSP Cookbook. Tim what do you think?

Sending hugs... Granni B

[daddyt in reply to Hidden]

Granny B you must have some psychic abilities. I planned to include paintings by any member of the PSP family... poetry too. I've seen a calendar from PD patients, something I'm considering as well.

Tim

[Hidden in reply to daddyt]

Tim, I like & appreciate your ideas & efforts. Of course l will help support PSP in anyway l can.

I have not found your paintings on line... where do l look for them? Have you made note cards?

Sending Hugs... Granni B

[daddyt in reply to Hidden]

Granny B - some of my paintings can be found on my Facebook Page. If you're on FB you can visit The PSP Chronicles - Tim Brown Author.

Tim x

[Hidden in reply to daddyt]

Thank you Tim, hubby has FB, l'm sure l can find it.

Can you guide me towards Elvira Graham's video? I found her on FB but could not find her video.

Sending hugs of encouragement... Granni B

[daddyt in reply to Hidden]

Granny B - I shared Elvira's post to my FB page The PSP Chronicles Tim Brown - Author. Have your Hubby visit my site (open) and you'll find a short video clip.

Tim x

[Hidden in reply to daddyt]

I finally did find a small video, thanks for the help Tim. Has she finished the documentary? I would love to watch it someday. Granni B

[daddyt in reply to Hidden]

It's just a video short, the documentary is still a work in progress. Was your hubby able to find my book's FB page.

Tim x

[Hidden in reply to daddyt]

Yes I found it ... it just took me longer than a four year old! LOL

[daddyt in reply to Hidden]

Don't be so hardon yourself. My grandkids get impatient with me say " Papa give it to me - I'll find it."

Tim x

[Hidden in reply to daddyt]

Good Morning Tim, I am not really hard on myself... just realistic. Actually l am happy with my level of tablet skills (now) but hope the computer will be up & running next week. My finger behaves better on the key board.

Here's hoping we all have an okedoky Tuesday... Granni B xx

[Ettavb in reply to daddyt]

Photography too? I’m a fine art photographer - been in quite a few curated shows and received a few honorable mentions. A lot of my recent work centers around the loss of my sister and mom’s condition (they were intertwined to some extent - my sister not seeking care in time because she was fully engrossed in the care of mom). I’ve never shared the details of my sister’s death because it was only tangentially related to mom’s CBD, but suffice it to say I have PTSD as a result of the series of events at the end of her life. But... a lot of that work is a bit dark (I do have other work that is probably more enjoyable😄)

[daddyt in reply to greelycat]

I had the same result when I first Googled PSP … Play Station 4 or something like that. Progressive Supranuclear Palsy is a mouthful. On the front cover of my book the letter P is enlarged and bolded , followed by the word progressive. Same applied to S and P. I remember the cover designer asking me " what is supranuclear?" and he is highly educated. I think on my next cover (s) I'll print PSP - Parkinson's Evil Twin.

Tim x

[raincitygirl in reply to daddyt]

...and CBD doesn't stand a chance against cannabidinol......

[enjoysalud in reply to daddyt]

I may not understand all that I read, but what I have interpreted is that PSP is NOT related to Parkinson's.....so it can't be it's EVIL TWIN, that would be misleading.

As more is learned more is revealed....Is Small pox the evil twin of Chicken pox or measles? I'm here to be educated.

affectionately from Los Angeles, CA, USA

[daddyt in reply to enjoysalud]

You're correct Margarita. The reference to Parkinson's evil twin has been floating around for some time. So much more was and is known about Parkinson's - less about Parkinsonisms like PSP, CBD, MSA and other neurodegenerative disease. Parkinsonism is the label used to clump these diseases together because in the early stages they present similar to PD... postural instability, rigidity, balance issues ect. I think it was easier for doctors to make the comparisons to Parkinson's because there was much known about it. But because the progression of these diseases is faster, the quality and length of life expectancy is much less than in PD... the ravaging results earned the moniker "Evil"

Tim x

[enjoysalud in reply to daddyt]

Thank you....On this PSP site I still read comments that PSP is a progression of PD and I cringe. Often too, reading the PD site (the first 3 years of my son's illness he was DX as PD, not ParkinsonISM...quite common as you know). I got attached to many of the contributors....once in a while I suspect a person has a PRIME OF LIFE BRAIN DISEASE and not PD. I am a strong believer of the power of the mind's belief and so I do not share my suspicions.

There is so much misinformation out "there" that I would not (even with the best intentions) want in any way to mislead.

Time to close my computer and relax with old repeats of THE CLOSER. I don't have cable TV and glad now because of all the choices my antenna gives me.

Blessings, M

[Ettavb in reply to greelycat]

I have a similar issue when I say “CBD” when describing what happened to mom. Now that marijuana has become legal in more places, CBD oil is now in our lexicon and people often confuse that with what mom‘s condition is (I guess maybe they’re thinking she overdosed on CBD oil? ). Anyway, I have to explain that it’s a an acronym for a rare brain condition.

[Hidden in reply to Ettavb]

Good Morning Ettavb, I was fortunate enough to find a pamphlet on PSP shorty after mom was diagnosed. I ordered extra to share with folks who truly cared. It did help. Sending hugs... Granni B

[enjoysalud]

Happy you are feeling better, and disappointed to discover you are NOT Superman (crum-bum).

Since we all know that ALS is well known I'm wondering about a HERTZ vs AVIS approach.

"Progressive Supranuclear Palsy (PSP) is the close and unknown cousin of ALS.

PSP, ALS, MSA, CBD, FTD and CTE.......we are all close cousins WITHIN the family of PRIME OF LIFE BRAIN DISEASES. Most people think we are a progression of Parkinson's. We are not. We are entirely different. We suspect that some who have died of Parkinson's in fact had a Prime of Life Brain Disease....Google to learn more"

Blessings, Margarita

[daddyt in reply to enjoysalud]

I was Superman in my previous life... or so I thought (:

[jamesmoffat]

hi tim

i would like to work withyou on getting PSP hgher on the world agenda

i came across your posts through a mutual connection with raincitygirl

i have had PSP from about 2015 --originally diagnoed as parkinsons until two scans at end 2017 changed all of that. sitting here in my own man cave my main interest is currently researching advanced quantum theory/quantum gravity and artificial intelligence.

you may find this hard to take seriously so i put forward my independently sourced wikipedia entry -search 'james moffat mathematician' also my research papers are available on researchgate

Basically --how can i help by writing stuff

[daddyt in reply to jamesmoffat]

Hi James - Kudos to you and your mathematical prowess, I'm glad that you've managed to maintain your computable abilities. Diminishing executive function now has me struggling with simple math.Thank you for your interest in advancing the PSP, CBD and MSA cause. I'm open to any suggestions and ideas that would propel PSP to the forefront while raising awareness and support towards treatment-cure.

Tim

[Dickwin in reply to jamesmoffat]

"you may find this hard to take seriously"

James, I can only speak for myself but I am in awe of your scientific, mathematical and artistic chops and find it hard to take myself seriously in comparison to folks like you who are so intellectually gifted. Even in the face of this disease, you remain prolific. Kudos!

[daddyt in reply to Dickwin]

I did the Wikipedia search on James Moffat Mathematician - James... you're in a league of your own.

Tim

[katras]

James,

I have to add my “awestruckness” at reading about you on google. I too have Psp, have no issues but balance & coordination, & couldn’t do higher math before Psp. We are blessed to have you on our site, even though it means you are dealing with this disease.

Kathy