May Is PSP Awareness Month

[daddyt]

For those on FB

Never mind Waldo, where in the world is Harley?

May Is PSP Awareness Month (Progressive Supranuclear Palsy).

PSP is a neurodegenerative disease with no treatment-cure. It is part of a family of Parkinsonisms (Parkinson-like), the more well known being ALS.

The humming bird has become the recognized symbol for PSP. To help raise PSP awareness this amazing little bird named Harley, is going to fly around the world. We only ask that you continue to SHARE his travels with friends, families, groups, public etc.

If you wish, under Comments you can also mention what state, province, territory or city in which you live. Happy travels Harley.

Please Share with friends, family, groups and public.

#ThinkHarleyThinkPSP

Tim

[salem16]

Hi daddy’s, wishing a cure. It is a cruel disease. Like to understand how one gets it. My husband is only 65 but have correspondence with others younger than that. We love in Regina, Saskatchewan, Canada.

[daddyt in reply to salem16]

I love in the Cambridge (area), ON. Diagnosed at 57 yrs.

Tim

[salem16 in reply to daddyt]

Can you tell me more about your diagnose what symptoms you have what you take for meds.

[daddyt in reply to salem16]

Hi Salem 16 - In the beginning I had experienced significant cognitive decline and dx with early onset dementia by a geriatrist. There were abnormalities on my MRI which he could not speak to and referred me to the neurologist... six months later. I was beginning to experience rigidity in my trunk, light muscle tremors and blepharospasm with my eyelids, falling- gait issues and some swallowing problems. Mood swings that left me dizzy. Dx with PSP-P (variant) a slower form of progression that may respond to levo-carb. Symptoms can be similar, but no two people will present the same.

Tim

[salem16 in reply to daddyt]

Thank you for sharing.

[Dadshelper]

Neat idea! Dad had CBD but I saw a hummingbird or two in St. Charles, Missouri USA. Currently I am watching it snow in Dayton, Wyoming USA so no hummingbird sightings here yet but I'll keep looking

[enjoysalud]

Hi Tim, Christine47 alerted me to the 60 minutes segment (CBS) which showed last night(Sunday) on FTD. PSP is sited as one of the manifestations of FTD, according to the FTD "group". My ex-husand died 2002 of FTD (DX by UCLA). My son died of PSP (as I always remind everyone) at just 5 weeks of turning 55 years old, May 4, 2017.

I know that the segments of 60 MINUTES are only 20 minutes, but still I was VERY disappointed in the presentation. I guess better to be disappointed than NOT recognized at all.

My sister is with me during this memorial weekend (for me).

I hope Tim that you are stable. I am looking forward to reading your second book when it becomes available.

Blessings, prayers, and hugs, Margarita

Los Angeles, CA, USA

[salem16 in reply to enjoysalud]

Can you tell me more about your son? Also the book you are referring to.

[enjoysalud in reply to salem16]

click on the circle next to my name. Up will come the "posts" I have written. Scroll down to PARKINSON'S TO PSP (it was my first post so it is at the bottom). You will learn about my son's story.

The book is the book that Tim wrote. It's how he is experiencing his journey of PSP. The proceeds go towards PSP research. I bought mine from Amazon.com........the title is THE PROGRESSIVE SUPRANUCLEAR PALSY CHRONICLES by Tim Brown. He is working on a second book.

[enjoysalud in reply to salem16]

P.s. Please keep in mind that the journey of PSP is not a cookie-cutter journey.

[Ratcliffe in reply to enjoysalud]

It is however a Very good book a documenting progress and day to day life. Volume two will be a very interesting read as I think it will come in about where I had to get involved...

[enjoysalud in reply to Ratcliffe]

Hi Ratcliffe, my share that the PSP experience is not a cookie-cutter one was in reference to the post I wrote on my son, PARKINSON'S TO PSP. I guess that would also hold true on all who share their PSP experiences.

I have found that "often" caretakers new to our site want to hear the "journey" of PSP. I just think it's important to emphasize that though some symptoms and solutions are common, they may not show up or if they do, at a different stage. The journey of one PSP is not necessarily the journey of another PSP.

My sister just left for her flight back to Texas. I am glad she was here with me and we distracted ourselves by a new activity each day.

[daddyt]

Hi Margarita - Sorry... it must have been a difficult anniversary for you. That was wonderful that sister was with you. I wasn't aware of the CBS segment - I'll check it out. My legs are becoming much more of an issue and the aggravating dystonia in my feet don't help the situation either. Other than that, I'm doing okay. Having the slower form of progression has allowed me to continue my PSP advocacy and awareness efforts... I'm thankful that. I'm still working on the manuscript for volume 2. If you visit my author website timbrownauthor.com, you'll be able to read one or two excerpts and other news.

Tim xx

[enjoysalud in reply to daddyt]

Your website, I can't access. Last attempt was on 5/7/19 at 5pm Pacific coast time in California. I think I will just wait for your 2nd book.

[daddyt in reply to enjoysalud]

That is odd. timbrownauthor.com isn't working for you? If you google the site, there are couple of posts that you take to right to the sight.

Tim x

[enjoysalud in reply to daddyt]

Hi, thank you....will try later. My sister left for home and I have my Bible study group this morn (SERMON ON THE MOUNT). It's heavily overcast here.

[daddyt in reply to enjoysalud]

The Beatitudes... nice.

Tim x

[enjoysalud in reply to daddyt]

Hi tim, wanted to share a "weird" with you. I came home and clicked on the 2nd timbrownauthor.com......the response where it was contained started with THAT IS ODD. It worked!!! Then I went back to the original timbrownauthor.com (contained under the response HI MARGARITA). I have tried several times the original and it does NOT work. The 2nd one no problem...consistently works.

To me both addresses are identical and yet only the second works for me. Very weird. Aside from that observation I am GRATEFUL that it works.

[daddyt in reply to enjoysalud]

Technology...

Tim x

[Bhakthan]

Am in India

Kerala State

Alappuzha District

Chengannur City

Pin: 689121

[Hidden]

Harley has lots of hummingbird friends in Boone, North Carolina, USA! My husband, 79, was diagnosed by a neurologist as having “probable” PSP two years ago based on the “hummingbird sign” in his brain scan along with other “Parkinson’s Plus “ symptoms.

[daddyt in reply to Hidden]

"Probable" PSP is the closest diagnosis a patient can receive. Pathology on the brain after death will confirm the presence of PSP.

Tim

[Ratcliffe in reply to daddyt]

If there are multiple thins involved in a death in the UK, we out (i) and (ii) as items on the death certificate.

David was (I) Hypertension (as it was diagnosed as heart failure that finished him) but (ii) PSP was listed.

Because David died in a care home whilst I was getting some respite time for a holiday, and it wasn’t expected he had to have a Coroners post-mortem.

I’m guessing that the post morgen confirmed the PSP was there as a final diagnosis then ? I’ll have to study the post mortem paperwork which I have a copy of but have never read in depth, as i didn’t need to go beyond initial confirmation at the time.

[Hidden]

Thanks for posting this Tim. Harley is an amazing color. Hummingbird Guide is where l post my first sighting of the year. On their sight you can sign up for the Hummer Newsletter. We are in lllinois and saw our first one about a week ago. So far we have two at the feeder at the same time but we will soon have 100 or possibly 200. It is impossible to count the little guys. We go through lots of sugar & our friends love to visit them. They are amazing little creatures. I have been feeding them here for almost forty years. Sending hugs... Granni B

[Pavaga]

Hi Tim,

Dave is 69, I am 55. Diagnosed with Parkinson on June 2015, diagnosed with PSP on May 2018. We live in Tulsa, Oklahoma. Present condition: walking with a cane, lost most of his vision, chokes frequently, therapy every week, sits on his chair most of the day. Taking one day at a time! Love to the PSP family, Patty

[Cuttercat]

Neato. I’m all in. Thanks for sharing

Cuttercat

[Cuttercat]

Is there a link we need to sign up with? And how do we send Harley or will you?

Cuttercat

[daddyt in reply to Cuttercat]

Do you have a FB account? Harley is doing a virtual world tour. You can see him as a public post if you scroll long enough or, facebook.com/Timinator7... he appears (many times on my timeline. All you have to do is Share the post with as many "friends" as you can, as well "public" like I do.

Tim x

[ForkLover]

We live on Lake Fork in Alba, TX. My wife Sue has had PSP for 4 years.

[Y2U4]

My husband has PSP. We are in California.

[Hidden]

My Husband has PSP was diagnosed six and half years ago. Eleven months ago he had a fall and did his hip spent six weeks in hospital and was told that he would need 24/7 care and is now in a nursing home I live in Melbourne Victoria Australia