An Incomplete Patch Work of Stroke Services – Young Stroke Retreat Speaking

Bob with Amy Edmunds at Young Stroke Retreat

Bob with Amy Edmunds at Young Stroke Retreat

Speaking at the Young Stroke Retreat in North Carolina and having dinner with the Young Stroke Foundation Founder last week brought me further evidence of the uneven patch of stroke resources that exist across our nation. Most of my recent personal experience has been in SW Florida where two Comprehensive Stroke Centers exist thirty miles apart which is supplemented by several Primary Centers in the area. Complementing that, EMS has a robust protocol and in some cases utilizes telemedicine to speed diagnoses before hospital entry.

That is not the case across the nation. In South Carolina, the state with the highest percentage incidence of stroke and where most of the Retreat participants reside surprisingly has less clarity about Stroke Centers particularly in rural areas of which there are many. Also, the EMS protocols are not as clear as they are in Florida. In neighboring state North Carolina where the Young Stroke organization is headquartered, there are several comprehensive centers and the EMS protocol is stronger.

All of this reminds me of my book’s (Stroke Victor) advice that we all should have a “Stroke Plan” which entails knowing before the fact where the closest stroke center is located. We should also know the signs of stroke so that EMS is called promptly. Time is brain!

At the retreat it was mentioned that in South Carolina 54% of strokes were in people under the age of 65, a high for the nation. Obesity and poor fitness of the population were identified as important factors of this deplorable statistic.

I spoke about my Foundation – Stroke Recovery Foundation and its mission of improving post stroke lifestyles and maximizing stroke outcomes. The group was highly supportive understanding that there is a need for more therapy resources, particularly in S Carolina.

Several of the other presentations were educational in nature, there was a report on a research study in progress at the University of S Carolina and several survivors told their stories of recovery. A lack of consistent services was a constant thread of the presentations.

Advocacy was a big topic as it is lacking in the field of stroke.

Bob Mandell Joins Young Stroke Retreat Lineup

BobBob Mandell, young stroke survivor and founder of The Stroke Research Foundation, will present during the Fall Retreat in North Carolina on October 16. The Stroke Research Foundation’s mission is to improve post-stroke lifestyles by promoting a range of 21st Century therapeutic modalities. The Foundation is also addressing the underfunding of rehabilitation research, developing media campaigns which seek to increase stroke awareness, and by supporting its Stroke Recovery Fund which supports stroke rehabilitation therapy for people without the means to pay themselves and who have hit their insurance caps.

Dr. Souvik SenDr. Souvik Sen of the University of South Carolina Medical School returns to share outcomes of focus group activities from the June conference. With Fall Retreat attendees, he will further explore potential gaps in knowledge for future research study. Attendees will be invited preview the new assessment tool evolving from this initiative. After a day of new learning, attendees will again be invited to participate in a focus group for capture insights and directions for future examination.

Lee PearsonLee Pearson of the South Carolina Institute for Medicine and Public Health serves as the keynote of the Fall Retreat. He will address how to educate legislators about young stroke with current challenges impeding access and dissemination of data related to stroke among young adults.

As a first time participant and speaker at this retreat I am anxious to learn more about this neglected segment of the stroke population.

The retreat will begin with a dinner where I will be interested to get participant inputs regarding stroke rehabilitation and recovery. Also, what has been the impact of having a stroke at a younger age on friend and family relationships.

Stroke Victor Bob Mandell Attends Canadian Stroke Congress as US Survivor Representative

I, with nearly 900 others attended the 6th Canadian Stroke Congress in Toronto held from September 17-19th. In my case I had been invited to be a media person representing US survivors. An impressive effort devoted to Stroke Prevention, Treatment and Rehabilitation was clearly visible.

I was taken by the number of people devoting their lives to the various facets of stroke and stroke recovery in Canada. Besides Canadians, I met American’s who were presenting at the Congress, many of whom indicated that stroke seemed to be more fully covered and organized in Canada than in the US. That has certainly been my impression since attending the 2014 Canadian Partnership for Stroke Recovery meeting in Ottawa.

Bob at Canadian Stroke Congress - 2015

Bob at Canadian Stroke Congress – 2015

So what areas in stroke did the Congress cover?

  • The latest advances and innovations in stroke prevention, acute management, rehabilitation, stroke systems, long term recovery and basic science;
  • Approaches to stroke care, including systems and discussions of their application in practice;
  • Discussions and presentations regarding evidence based research and best practices.

There were well over 100 research posters on display in the large convention meeting room which provided a convenient place to network. Many of the posters were prepared and manned by graduate students as part of their educational efforts. Others were reports of research studies in progress or completed which the research teams wished to report to the Congress attendees.

And of course there were vendors of pharmaceuticals, adaptive equipment and interestingly some of what I called call lifestyle items. The latter were, for example, bean growers who indicated the beans were important components in healthy eating to reduce stroke risk and improve recovery with a healthy diet.

I was most appreciative to attend the Congress and wish to thank the management of the organization for giving me the honor to attend. The experience was definitely an enlightening event.

A Healthy Salad for a Labor Day Cookout

Late Summer Flowers

Late Summer Flowers

With Labor Day on the horizon the end of summer is near! For those of us in SW Florida the end of hot humid summer means it’s more likely that we will eat outside, go to the beach or have a cookout. Years ago I developed recipes that are at once heart healthy, tasty and outside friendly. The latter means no mayonnaise to go bad in the heat.

For those of us who either have had a stroke or heart attack, or don’t want them, this recipe works because it is low in fat and salt.

I’ll share this one which goes well with barbequed foods or as a standalone as a compliment with other salads.

Preparation time is 20 – 30 minutes maximum.

 

 

Bob’s Pasta Salad

2 lbs Barilla Rotelle – #75
½ good sized chopped red onion
½ each – good sized yellow and green pepper – chopped
12–14oz chopped sun dried tomatoes bottled in oil – get in Costco or most decent supermarkets
2 6 oz cans sliced black olives – drained
12 oz green olives with pimentos – chopped or whole as you like
1/3 cup juice from green olives jar

Dressing

1 cup dark balsamic vinegar
½ cup extra virgin olive oil
6-8 tsp mild honey mustard
1-1½ tsp oregano
½ -1 tsp basil
¼ tsp celery seed
¼ tsp cayenne pepper – If you like spicy food then add more of this
2-3 tsp crushed bottled garlic
½ tsp garlic powder
Salt and pepper to taste – I use no salt. Fresh ground pepper is best.

Optional – Add some halved cherry tomatoes to recipe

Boil pasta to slightly al dente. Thoroughly drain and toss in large bowl with juice from olives to prevent pasta from sticking. Throw in all above solid ingredients.

For dressing, in glass mixing bowl, combine all dressing ingredients. Thoroughly wisk spices in juices and then let sit for a few minutes so that flavors combine. Re-wisk and then combine with pasta and vegetables. Mix and chill for a few hours.

Bring to room temperature and serve. Salad should be made at least 4-6 hours before serving, a day ahead is preferable. If you are hosting the party this cuts down your last minute panic.

If salad is made day or 2 ahead of time and it needs a bit more liquid before serving, use a bit of Wishbone Zesty Italian dressing, shaking vigorously before pouring.

Note: Spice amounts are approximations since I don’t measure. I may have used more oregano, basil etc. Also, you may like it more or less spicy. And remember, I add no salt although some of the ingredients do contain salt.

Leftovers will easily stay for several days in refrigerator.

If the group is smaller cut the ingredients in ½.

ENJOY!

No Good Startup Names Left – Want To Bet?

Bob Mandell Speaks at Cape Coral Rotary Club

Bob speaks at Cape Coral Rotary Club

When I started thinking about forming a non-profit in the stroke area in December 2014, just a few short months ago, one of the first things that I did was to think about obtaining a good name. As a prudent entrepreneur, what do I mean by a good name? I like names that say what our focus is or what we actually do! I don’t have millions of dollars to create a brand from a name that in itself is meaningless.

The current issue of august Forbes Magazine (9/7/15) has an article entitled – No Good Startup Names Left. Let me quote them:

“In mid-August Google announced it was reorganizing itself under an umbrella company to be called Alphabet. Pardon us for asking, but are world-beating multinationals now outsourcing their name selection to first-graders?
They aren’t actually- the problem it seems, is that all of the good names are already taken. And if Google can’t come up with a decent – or at least meaningful – name for itself, what hope does the average startup have? The unfortunate result: a spate of mealy mouthed mash-ups with no relevance to what the company does…”

While I would normally agree with the Forbes writer, he or she left out one very important factor in the availability of good names – DOES ANYONE CARE ABOUT A PARTICULAR FIELD OR SEGMENT, IS ANYONE LOOKING, IS THE PRODUCT, SERVICE, OR MISSION ON SOMEONE’S RADAR? If so, the names are gone!

So let’s go back to my name finding efforts a few months ago. After thinking about what my non-profit’s mission was going to be I went to my trusty domain seller – MyCoolDomains.com and started to put names in to the search engine. Low and behold, nearly every “good” or descriptive name was available. I was stunned. How could these not have been taken years ago as the Forbes article suggests?

How could it be – a disease that is the number five killer and number one long term disabling disease which strikes over 800,000 Americans a year, and millions, yes millions more globally? How was it possible that the good names were available? Because it seems that few people seem to care! Of course there are hard working professionals in the stroke field and there is obviously research ongoing. But I learned while researching my book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor that the whole field of stroke was seriously underserved in terms of advocacy, outreach and research, among other things.

So I bought a bunch of descriptive and meaningful names six or seven months ago and more since. Just a few, The Stroke Research Foundation (the name I chose), The Stroke Recovery Foundation, and Stroke Recovery Fund and believe me, it goes on. With and without the “The”!

So to this blog post’s original title – NO GOOD STARTUP NAMES LEFT! — WANT TO BET?

YES, THERE ARE GOOD NAMES AVAILABLE WHEN NO ONE ELSE IS LOOKING!

As a survivor, I CARE ABOUT THIS! MY TEAM CARES! MY VOLUNTEERS CARE AND YOU SHOULD CARE IF FOR NO OTHER REASON – IT COULD HAPPEN TO YOU OR YOURS AND THEN YOU WILL DEFINITELY WANT US TO CARE AND BE DILIGENTLY WORKING ON THIS DAUNTING TASK!

The Stroke Research Foundation intends to make a difference in the after stroke lifestyles and outcomes for millions of American’s, including many in SW Florida where I live! Stroke survivors, stroke caregivers and everyone else involved with stroke!!

PLEASE JOIN US AND SUPPORT US!

Money, Money, Everywhere But Where It Should Be! Stroke Survivors Beware

Reading two articles that recently appeared in the Naples Daily News on preventing a type of stroke called atrial fibrillation through the use of anticoagulant drugs, I was most interested that the article was focused on preventing stroke with elegant new drugs that had millions of dollars behind them. The article was focusing on the effect of large sums of money and industry relationships that suggest “an old boy’s club”.

Bob with Dr. Dale Corbett

Dr. Dale Corbett – Scientific Director and CEO – Canadian Partnership for Stroke Recovery at the 2014 Partnership Scientific Meeting

In my book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor I discuss the drug approval process from a patient perspective and that the FDA plays a critical role. When I am speaking to an audience, many of whom are stroke survivors like myself or stroke caregivers a common question is “What is the state of rehabilitation research?” To which I answer – “The field is amazingly underserved considering that stroke is the number one long-term disabler disease.”

There is puzzlement in the audience to which I explain that most stroke rehabilitation is more physiological and mechanical and does not require drugs where the big research money is. Therefore, rehabilitation research is more dependent on government funding which has declined on a non inflationary dollar basis over the past ten or fifteen years. Unfortunately, even in the Government sector, stroke does not get its fair share which I will discuss further in a future blog post.

I am sometimes chastised for discussing the sorry state of stroke research however one knowledgeable administrator at a US Government clinical research site wrote me while I was editing the book, “Are we deficient in having sufficient rehab options and preventive strategies for people – absolutely! But that is another problem…”

As the recent Founder of The Stroke Research Foundation, Inc., a 501c3 headquartered in Naples we are focused on this problem – this conundrum! We seek to improve post-stroke lifestyles by developing strategies and technologies to maximize stroke recoveries of our neighbors in SW Florida, and nationally, many of whom are affected by this dreaded disease.

The Shoes on the Other Foot

scooter1Thinking back while writing my book, Stroke Victor I realized that Debbie was an excellent caregiver. That doesn’t mean that she did everything for me. Actually, in my view that is not a good caregiver. The survivor must strive for independence to be a Victor and that means that they must learn, or relearn to do things for themselves. This is true for stroke in men and stroke in woman. Find another way if the original approach is not doable after stroke. The caregiver can certainly give close support and perhaps finish a task if at a particular stage the survivor just can’t do the task. But only after a really good “college try”! And the survivor should understand that the next time they try that task they should try to extend their gains with the objective of ultimately finding a way. I can’t tell you how many times I did that while recovering from my stroke.

Last Friday Debbie had some fairly complicated foot surgery. In 1995 a surgeon in New York while removing a bunion had taken too much bone. Over the years and more recently her large toe had shifted significantly allowing the next two toes to likewise shift. She had gotten to the point that she could not wear any shoes without serious pain and had to rely on flip flops. To a large measure you can get away with flip flops in South Florida but that leaves everywhere else at risk and we do travel and also go out where flip flops would be inappropriate. So the surgery!

Coming home from the surgery she could not walk on the damaged foot. We had purchased a rolling scooter so she could get around. This type of equipment allows the injured party to place their injured leg on a seat taking the weight off of the foot. However our roles had suddenly changed with me providing many more services than at any time since the stroke. I am putting the scooter in the car boot and having to serve food etc. You know the drill.

I was making mistakes that I was saying were wrong for a successful caregiver. “Let me do it” has recently been the operative phrase. “I can do it faster” even in my disabled state. But Debbie is always trying to do things herself hopping around on one foot and actively using the scooter. Fortunately her superb fitness in this situation is a substantial advantage so; I am learning to let her do her thing as she let me in the past. Anyway, I have a whole new perspective

In the book, I said a “toast” to all the caregivers but now I see the role from a completely different perspective. I should have said, a double toast!

SURPRISING DATA ABOUT STROKE AND CHILDREN

A mission of The Stroke Research Foundation that I have founded is to develop media initiatives to spread awareness about things that I am sure that the general public is wholly unaware. In many cases, the same can be said about me even though I am a survivor, and one who is now an author in the field. Who would have thunk?

SURPRISING DATA ABOUT STROKE AND CHILDREN

 

One of the more surprising of these areas is the subject of Stroke in Children. The Summer 2015 issue of StrokeSmart, the current issue, which is the Journal of the National Stroke Association magazine makes reference to Young People and Stroke. Some shocking and I mean shocking statistics that I would bet that not 1 in a 1,000 would know:

  • Stroke is among the top 10 causes of childhood death;
  • An estimated 3,000 children die of strokes per year in the US;
  • Boys have a higher incidence of stroke;
  • Nearly half of all pediatric strokes occur during the first year of life;
  • And the recurrence rate in pediatric stroke is 20%.

While writing my book I was introduced to a lovely young woman who had a baby who had had a stroke. The child suffered a brain injury in the event and after several years of being institutionalized had passed. Clearly a tragedy to behold!

When I speak about stroke I sense that most people think of stroke as an elder disease. While that is certainly partly true, during the past several months I have met several young people who would shatter that notion. A young man of 28 with a child in Cape Coral, Fl, a bright young lady of 30 in Ft. Myers, Fl whose promising career was certainly impacted by her stroke! These have opened my eyes to what for me is “the new reality”.

Thanks to StrokeSmart for the statistics and head’s up which form the basis of this blog post.

Stroke Victor Bob Mandell invited to attend the Canadian Stroke Congress as a US Survivor Media Representative

The Canadian Stroke Congress has been recognized as a leading conference which brings stroke experts from around the world together to advance stroke prevention, management and recovery. The 2015 Canadian Stroke Congress has received the endorsement from the World Stroke Organization. The Congress will be held in Toronto September 17-19 2015. Bob will be posting articles about the latest technologies in stroke rehabilitation during and after the Congress.

Members of the US professional stroke recovery community as well as survivors who have particular questions should contact Bob at bob@strokevictor.com prior to the Congress.

Naples’ Bob Mandell goes from stroke victim to victor

When a stroke paralyzed Bob Mandell 19 years ago, he couldn’t speak.

“I couldn’t get two words out,” he said.

Now, the Naples resident can’t talk and learn enough about the disease. One month ago, he completed writing a book “Stroke Victor: How To Go from Stroke Victim to Stroke Victor.”

While he told his story of going from stroke victim to stroke victor, he also brought out eye-opening information including:

  • Federal spending for stroke research doesn’t rank in the top 10 among diseases despite being the No. 1 long-term disabler and the No. 5 killer.
  • Almost 80 percent of strokes are preventable if people had better diets and exercised more.
  • More than 1/3 or 34 percent of strokes happen before age 65.

“Cancer is a hurricane, stroke is a tornado,” Mandell said. “It comes out of nowhere. Stroke also is an underserved disease. It’s an orphan disease. It’s part cardiology, part neurology. There’s not much privately funded research in strokes and some government research.”

Mandell will talk about his book, which he hopes will be the first of several launch receptions, Sunday at the Sanibel Community House on Sanibel. He’ll also talk about The Stroke Research Foundation, a charitable 501c3 organization for the purpose of increasing post-stroke rehabilitation options to dramatically improve post-stroke lifestyles today.

Read More here

http://www.news-press.com/story/life/wellness/2015/07/20/stroke-bob-mandell-paralyzed-book-stroke-victim-stroke-victor-sanibel-naples/30304087/