Past posts:

Previous blog posts from last year can be found.... HERE.

Monday, January 27, 2014

Scraping the bottom in our boat... It happens...

     We've scraped bottom now times or should I say we bumped or were within an inch of the bottom, but today I'm pretty sure we turned up a lot of bottom as we were down to about 3.6 feet. and for the record that was center channel at high tide.

(Click to view video)

Sunset tonight as we float at anchor

Thursday, January 23, 2014

Even with Parkinson's disease, I don't don't sit around at all during the day. Always something to do!

Some more pictures from sunny Florida, as we make our way further south raising awareness for Parkinson's disease.  To date, we have raised over $250,000, 100% of which goes to the American Parkinson's Disease Association and it's RI Chapter for Patient Care Services.  All expenses for our trip are paid out of pocket!

The Admiral wanted to go the Botanical Garden, with a one mile walk each way.

The structures of the flowers, like these orchids, were incredible!

Sunsets never get old!  This is from the back of our boat each night.

I'm not sure my vote would be to put flames on the side of my Sabre!

Me in front of the dolphin statues in Sarasota, freezing my butt off in 50 degree weather!

This is one of the more interesting lighthouses of our journey.

Wednesday, January 22, 2014

Monday, January 20, 2014

Parkinson's disease or not... Florida is treating us well! (pictures)

A picture is worth a thousand words!  Here are just a few on our trip from Rhode Island to Turks and Caicos, and back up.  Right now we are near Sarasota, Fl. and are slowly making our way down the coast.

Thank you to all that follow and have donated!  We have raised over $250,000 for Parkinson's disease research, with 100% going directly to the American Parkinson's Disease Association (APDA)!

Becky off for groceries

On the Venice Pier

I found Paradise!  It's on a beach in Sarasota.

St. Armand's Square in Sarasota

Nobody is on the beach on Longboat Key.

Bike weekend - 5,000 of them!  Sarasota last weekend.

Bike weekend - 5,000 of them!  Sarasota last weekend.

Bike weekend - 5,000 of them!  Sarasota last weekend.

Here is our intended route.

Yes, I drove the boat down this sliver of a canal.  Why?  To get to the other end.

Thursday, January 16, 2014

For all of you with Parkinson's disease... OPTIMISM Can Take You Anywhere!

     While things are well in Sarasota, FL.  I wanted to take this opportunity to share with you again why I'm doing this in the first place.  While I never imaged being diagnosed with Parkinson's disease, it sure as heck isn't something I'm going to let get me down.  I made the video below a few months ago, and the message then is just as strong today!  Optimism Can Take You Anywhere!

Wednesday, January 15, 2014

Parkinson's disease isn't slowing me down! Update from Sarasota, FL.

Greetings from Marina Jack Sarasota, FL.  To those who write and ask why I don't write/post more often, here ya go...

The past several days has presented some of the most difficult navigation and driving experiences of my life going just the 85 miles from FT Myers to Sarasota on the inside (not all out in the Gulf) in a boat that draws 4'.  One stretch was 16mi, my brother Bill was driving in the center of the so-called channel and the deepest the water beneath the propeller was 3', averaged about 2' and got down to skimming the bottom many many times.  BUT we did not touch bottom!  Then to get out of that waterway we cut thru one of those "LOCAL KNOWLEDGE ONLY" passes.  Those are are 50-75' cuts in the island usually made by a recent hurricane that are unmarked.  WHY TRY THAT you ask?  Many of you may differ in this but I'm NOT totally nuts. "I know what I know and I know what I don't know" and I knew this was not the time take any chances.  So I asked around and followed someone out that I had just met, had talked to and he seemed to know what he was doing.  In the space of bout 90 seconds and 300' length, while driving the boat in a pattern like that of an "S" the depth goes from 6' below the prop, to 28' then 5', then 3' across  the bar and then out.  Whew!
My brother Bill was with me and his comment was something like "and you call this relaxing"?  Yup, just living up to the carving on the wall of the pilothouse given to me by the guy who bought my last boat:  "Life Begins at the End of Your Comfort Zone".  If that is the case I must be re-born today.

We are here for a month and then down the W Coast of Fla to the Everglades, then the upper Keys about the last week of Feb to await a good weather window to make the jump to the Bahamas and then further South.

As many of you have asked me how I'm doing, I'm feeling "ok". Parkinson's disease had me pretty beat up 3 weeks ago but Dr F tweaked my meds ("high-five" Doc) and I am much better now.  Most important is the mindset, I'm 8 1/2 years into this insidious disease but remain assured, I would NOT change places with anyone in the world, PD be DAMNED!

BE WELL and remember, nobody ever went blind looking on the bright side.

Monday, January 13, 2014

Oh the places we go!

It's been awhile, sorry for the lack of postings.  Here is a short one.

My favorite place to go is somewhere I have never been before. In this case YES I just had to go down this canal. it was very tight on the sides and to be honest I could not look at the depth finder even though the shallow water alarms were going off, I did not want to know how close we were to the bottom.  

Where are we?   Okochobee Canal, in the middle of FL, about 50 mi east of Ft Myers and 100 mi west of Stuart.  So it is all ahead dead slow, Parkinson's be damned. Get it?


Wednesday, January 8, 2014

Friend of Bob's is in the news! World Parkinson's Congress 2013 Video Competition!

Original Article:

Larry Schneider of Gibbsboro receives second place in the World Parkinson's Congress 2013 Video Competition

Larry Schneider
Larry Schneider, Gibbsboro, assists his daughter at mini golf. (Photo provided)

Larry Schneider Jr. of Gibbsboro used to work 40-hour week, play guitar in a rock band and worked as an artist in his spare time.
He wrote music and performed with several bands three to four nights a week. He also enjoyed fishing, appeared in two movies and finally married Jennifer, the love of his life, and started a family.

Then, 16 years ago, at the age of 27, he felt a tremble or “flicker” in the thumb on his left hand.

“So, from 1997 to about 2001, that space of about five years, was when I started questioning my body’s performance,” Schneider said.

It took six years before a neurologist finally diagnosed Schneider with Young Onset Parkinson’s Disease.

“That tremor in my thumb came and went,” he said. “What stuck around was the decreasing dexterity in my left hand, my fretting hand for bass guitar, and moments when I’d move, overall, slower.”

With a young family to care for, the diagnosis hit Schneider hard. However, his family has supported him from the very beginning.

“My entire family is very supportive, not just my wife and kids. My parents, who live a short distance away, come by four or five times a week to help me with dinner and putting the children to bed,” he said. “My father takes me to a lot of doctors appointments. And the other side of my family, my wife Jennifer’s side, are putting together an addition, complete with ADA approved access and rooms including a bathroom and outside deck.”

In an effort to honor his family and friends who have helped him throughout his journey, Schneider recently created a video for the World Parkinson Congress 2013 Video Competition.

There were 113 submissions from 18 countries. Schneider’s video, titled, “To the Givers of Care,” received second place overall.

“Without a doubt, it was my way of saying thanks to everyone close to me who gives in so many ways and doesn’t think twice,” he said.

The video is a slideshow of images and text played over a recording of Scheider’s acoustic song, “End Thing II.”

“It’s a short acoustic guitar song that I actually wrote close to 20 years ago,” he said. “I guess I created the music way ahead of time as if I knew it would be used for something like this. It fits so perfectly.”

Since his diagnosis, Schneider has been prescribed Sinemet, which he describes as the “golden rule drug,” which is usually the first medicine prescribed. It actually determines whether or not the patient actually has Parkinson’s Disease, he said.  “If it works for you, it’s considered a good indicator,” he said. “I started out taking Sinemet and it wasn’t too long before I developed dyskinetic movements (the type that Michael J. Fox has been seen suffering from.)”

In 2006, he underwent his first Deep Brain Stimulation surgery during which the surgeon placed a device that administers a steady, controlled, electrical impulse to the brain in his Subthalamic Nucleus, which is typical for Parkinson’s patients.
“Having DBS can mean that the need to take medicine is lessened because the surgery administers a steady, controlled electrical impulse to the brain,” Schneider said. “An impulse that can mitigate the debilitating symptoms.”

Four short years later, Schneider developed Dystonia — a neurological movement disorder in which sustained muscle contractions cause twisting and repetitve movements or abnormal postures — on top of his Parkinson’s.

“It was suggested by the programmer of my (first) device that I could have DBS surgery all over again, this time getting bi-lateral implants that would target the GPi (Globus Pallidus interna) region of the brain,” Schneider said. “This is very uncommon, to have more than one set of DBS devices, however, I agreed to it because the first operation went so well.”

Schneider is currently off all dopaminergic medicines like Sinemet.
“I can’t tolerate the ‘on/off’ roller coaster,” he said. “My speech is effected, which could be the progression of the disease, the two DBS surgeries or a combination of both. My biggest concern is my gait and my mood, though both of those areas are currently being addressed by my physicians.”

But thankfully, Schneider is still able to play music and draw.
“I play music, not as frequently as I’d like, however,” he said. “When I do get the chance, I play better than I did 13 some odd years ago. I’ll always be connected to art in some way, shape or form. I have my sketch book filling up with curious, pencil and pen-and-ink selections of what I see around me.”

He said the most difficult part of living with Young Onset Parkinson’s Disease is the burden he feels he can be to his family.  “My wife says that all five of us live with PD,” he said of his family including their three children. “I may be the one who has it, though, they also live with it. Even though what I’m dealing with is a progressive neurological disease, I feel optimistic that with the help of my doctors, soon I’ll be able to get to some more quality living with my family and friends.”

Monday, January 6, 2014

Parkinson's Disease Hockey Invitational

This is a Guest Blog written on behalf of Bob Preston...

Like hockey? Have PD? Then this blog is for you!

One aspect I love about the game of hockey is the constant movement. Whether you are holding the puck or waiting for a pass, you are always involved. Mentally, you don't have time to think about anything else.

Despite having my little setback, I decided to build an indoor roller/street hockey rink in my backyard. Once a week I get together with some old and new friends and we skate until we drop. I have a saying - check your problems at the door, have a lot of fun, and if you like, you can pick your problems right back up after you are through playing.

I recently had lunch with Bob Preston and was telling him a story about one of our games. Suddenly he looked up at me with a Santa sort of twinkle in his eye. He asked me if we ever play on shoes. I sensed that there might be more to his question so I replied “have you ever played”? Of course now the mighty Captain is grinning ear to ear and responds “I wouldn't be able to skate but I could certainly play in my sneakers”.

Edward Dias

Editor's Note.  Don't let PD stop you from trying something you love.  Adapt!