Deans' stroke musings

Changing stroke rehab and research worldwide now.Time is Brain!Just think of all the trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 493 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It's quite disgusting that this information is not available from every stroke association and doctors group.
My back ground story is here:http://oc1dean.blogspot.com/2010/11/my-background-story_8.html

Friday, September 23, 2016

‘Spokes’-man for stroke survivors

I really hate outliers like this and myself. It gives a totally wrong picture of what normal recovery for a stroke survivor is like. This 'happy talk' will never get us closer to solving all the fucking problems in stroke, it actually makes it less likely because people take the easy way out and just say, 'Look at how much that person recovered, why can't you do that?' That is why you need to be screaming into your doctors face asking why s/he knows NOTHING ABOUT STROKE RECOVERY.  Whew, I feel better now.
http://www.mariettatimes.com/news/2016/09/spokes-man-for-stroke-survivors/
For Dan “Trikeman” Zimmerman, stroke survivor and cyclist, it’s not about the destination, it’s about the journey.
On Wednesday Zimmerman shared his passionate and inspirational message with more than 30 people at Selby General Hospital as a part of his third cross-country trip “Sea to Sea Tour,” totaling 3,814 miles. He uses a trike, a lightweight, three-wheeled vehicle that’s low to the gorund.
Zimmerman’s presentation also served as a kickoff to National Rehabilitation Week.
The 52-year-old Gilbert, Ariz. resident suffered a massive stroke in 2005 (caused by hereditary hemorrhagic telangiectasia), leading doctors to believe he would never walk or talk again.
Zimmerman said he was determined to prove the doctors wrong and take back the life he once had.
Through his recovery, Zimmerman found a love for adaptive cycling, and now he travels the country speaking to other stroke survivors advocating for this type of rehabilitation.
“I want to show that as an alternative recovery mode, trike riding works,” he said. “It got me talking and believing in myself again.”
Zimmerman said he was able to find a new sense of freedom  and comfort through cycling.
“I’ve found freedom, plain and simple,” Zimmerman said. “Plus, nobody knows while I’m riding that I had a stroke. Freedom has inspired me to do this.”
Lise Neer, Zimmerman’s communication manager, said he inspires people to never give up on what they want to do.
“We’ve already had so many people come up to us,” said Neer. “They told us how inspiring and encouraging he was and how positive it is. It’s so great and it’s exactly what we want to happen.”
Lloyd Booth, 69, of Whipple is a stroke survivor and a volunteer for the stroke support group at Selby General Hospital.
Booth heard about Zimmerman through a news article he read and wanted the cyclist to come speak during one of the support group’s gatherings.
“This is such a blessing to enjoy at this time when survivors are realizing their strengths and helping them live through those,” he said.
Booth said Zimmerman’s message is empowering.
“His message teaches us what the human spirit should strive to be,” he said.
Stroke survivor, Lori Jett, 53, of St. Marys said Zimmerman’s message lets her know that anything is possible.
“He’s gone through what we’ve all gone through, and that’s an amazing feeling to know that anything can happen,” she said.
Stroke survivors were also given the opportunity Wednesday to try out four trikes that were made available by Zimmerman.
Zimmerman said it’s always a joy to see the smiles on the faces of the stroke survivors when they try out a trike for the first time.
Neer met Zimmerman a few years ago as he was passing through Denver and decided then that she wanted to be a part of his journey.
“I’m a better person because of this,” she said. “He’s the type of person who knows what he wants and determination is his driving force. He has a strong personality and a lot of that energy is now focused into his mission.”
As a reflection of the cyclist’s personality, he named his trike “Equalizer.”
“I pride myself on being fast,”  Zimmerman said. “My type-A personality never allowed me to consider giving up. Once I decide on something I stick with it till the end.”
In Zimmerman’s presentation he also spoke about his life before the stroke and the struggles he faced during his recovery.
“I watched my diet and lifted weights five times a week, two hours a day, for 10 years,” he said. “After the stroke happened, it’s hard for me to tell you what hopelessness feels like when I was in the hospital, with my entire right side paralyzed and no talking. I lost my ability to spell; screaming and swearing in my head helped me, but I had no words to express myself.”
Before the stroke Zimmerman was constantly outdoors, and through cycling he was able to be out in the environment he so longed for during his recovery.
“I was shut-in for four years,” he said. “I desperately wanted to get outside, but was dependent on others for mobility. On the trike, it’s my decision whether to stop or go, turn left or right.”
Cycling was the gateway to the future of  Zimmerman’s health and through cycling he proved the doctors wrong.
“I was barely talking before I started riding,” he said. “Doctors told me my progress would plateau after one year, so I listened to them for the first four years. I enjoy proving them wrong. I want to open the eyes of therapy professionals to greater possibilities for recovery.”
Through his foundation, Spokes Fighting Strokes founded in 2013, Zimmerman has done a total of three cross-country tours in order to spread awareness about stroke and HHT.
“I picked the Adventure Cycling Association’s Norther Tier Route, which is a total of 3,814 miles to spread awareness about stroke and HHT, with the message of don’t give up. Hope, freedom and recovery is possible through triking. I am a living proof of that.”
HHT is a genetic disorder of the blood vessels, which affects approximately one in 5,000 people, some of those people being Zimmerman’s family members.
“My grandmother and mother both died from HHT,” he said. “My older brother died at the age of 19 from  a brain bleed caused by an AVM (arteriovenous malformation,) due to having HHT. My younger son now has it and I want people to know about it.”
According to Zimmerman, HHT is relatively unknown and gets little research attention or funding.
The “Sea to Sea Tour” team is asking for donations to continue Zimmerman’s awareness plan.
Neer said new equipment is needed, such as another folding trike, a tandem and an enclosed trailer for storage and transport, volunteers and most importantly funding.
“We will be fundraising throughout the winter in Arizona and next summer, while running the Adaptive Cycling program in Denver, as we prepare for our next big tour in 2018, along the east coast, north to south,” said Neer.
Donations to “Spokes Fighting Strokes” can be made through Zimmerman’s website spokesfightingstrokes.org or through mail.

4 comments:

  1. My two cents: I could ride an adaptive trike when I was still profoundly disabled; being able to ride it 3,000 miles doesn't mean he has recovered. How much HAS Zimmerman recovered? I see that he has recovered his speech, but cannot tell from the article if he has recovered physically. I suspect not - or he'd be riding a regular, not adaptive, bike.

    I don't mean to belittle Zimmerman's accomplishments or his inspirational message, but I've been disabled by stroke for 7 years and am trying to be able to row a gig boat; I actually can already - by having my husband sit in front of me and help me with the parts I cannot do yet because I haven't recovered enough to do it by myself. My goal is to do it by myself, without adaptations.

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  2. Personally, I recommend getting a trike as soon as survivor is able. My stoke was May 2013 and left me with left side hemiparesis, but no speech, memory, or cognitive issues. I bought a Catrike adapted with left strap on pedal & Left brake & shift controls moved to right side June 2015.

    Fortunately, right out my driveway, I have a fairly flat 10 mile loop I can ride in the rural area I live in,. I have done it 50 times, which is a nice break from the stationary bike at gym I use to get some aerobic activity. I cannot walk fast enough to get my heart rate up so trike is great.

    My balance is fine, but I doubt if I will ever have enough control & quickness to ride a regular bike and I do not see any long rides Like Dan does in my future

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    1. I got an upright old persons trike maybe 4 months after. I went for that because I figured that I would not be able to hold my left foot up in front of me and keep it on the pedal. I tipped it over in the first 100 yards on a flat path because you need to learn immediately that you don't turn by leaning.

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