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.


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!


Speaking about Stroke Recovery at The Pelican Bay Club

Bob Speaking at Pelican BayI recently made a presentation at the Pelican Bay Men’s Club in Naples, Fl. Most of the residents in this large upscale country club community are retired professionals and successful businessmen. I was invited to discuss stroke and to make a presentation about my recently published book, Stroke Victor. There were about sixty gentlemen in attendance and I spoke about stroke recovery and stroke rehabilitation for about forty minutes.

An interesting and funny story! I was invited to speak by a friend who is on the Men’s Club Speaker committee. At a preliminary meeting, he asked me if I was ready to do the talk. I capriciously answered that “I could speak about this subject in my sleep”. That comment freaked my friend out saying “I don’t want to be embarrassed. If you are doing it in your sleep, they will need cots”.

My comment turned out to be a brilliant thing to say. My friend Arnold, a successful retired broadcasting executive, and an expert communicator was motivated to coach me to be as sure that I would not embarrass him.

He has heard me speak one to one about my stroke recovery efforts but while supportive was quite dispassionate about the subject, having been fortunate enough to have never been touched by stroke. But he certainly knows how to speak quite eloquently, humorously and effectively. Listening to my story he noted that early in my stroke recovery phase I could not speak more than a few words. And though I have now recovered my voice, even publicly, which is a relatively recent phenomenon he knew that I was helped by integrative therapies.

So he suggested that I demonstrate the therapy during the speech and also suggested a dramatic way to start the presentation. Finally, he gave me some sage advice about staging the after stroke speech and how to handle questions and their timing. Great advice! I am very grateful for his suggestions which have made me a better communicator, both for this particular speech which went extraordinarily well, and for my future public speaking engagements.


The Peer Visitor Shadow Visits – Bob Mandell

Per-Visitor-uniform

So the clothes don’t make the man but they can be used to create the right image for a particular moment. That’s how I view the uniform.

The Peer Visitor Program brings those who “have walked the walk” to those who are “walking the walk”. During my first day of doing shadow patient visits, I realized that is the most valuable part of the program, at least from my initial perspective.

I was being trained by participating in these visits as I accompanied an experienced person. Previously, I had read an extensive binder of materials with background information, paperwork and process requirements, suggestions, and Do’s and Don’ts. And of course, NCH had performed an extensive background check on me before giving me a uniform, hospital access and letting me wander the halls of the facility to meet with the various patients.

We met with several patients during the nearly three hours I was in the Rehabilitation Hospital. I noted that each patient significantly perked up when both of us individually disclosed that we had ourselves suffered a brain injury. You could just see the “light go on” as we each briefly told our personal brain injury story. It was quite remarkable.

It’s interesting that reading the training manual I got the distinct impression that a big part of our role was to listen and ask a few pertinent questions of the patient. However, to get the survivors attention (and sometimes the caregiver’s) it was necessary to make a considerable effort to break the ice. Certainly this was not surprising since we were perfect strangers.

We achieved our breakthroughs by briefly telling our own personal story. In one case, after we told our story of stroke rehabilitation and stroke recovery the female patient said that she didn’t usually speak with strangers very well or disclose her more personal feelings as she was with us. I was quite taken. During this first day, I witnessed several similar breakthroughs, if not quite as dramatic. In each case, the patient became quite talkative and forthcoming. In one case, a younger woman with children disclosed her husband’s pressure to recover faster. She resented his pressure.

But then I started to think about myself after stroke and during my stroke recovery phase. If someone visited me and said, “Look, I was like you in bed or in a wheelchair with considerable deficits and not feeling so great but look at me now. How would I have felt?

Encouraged! By example, I could see that this was doable, and it is – though it is not easy!

For more information about the program please go to www.braininjurypeervisitor.org and www.strokevictor.com.

Bob Mandell is the author of the recently published book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor


Being a Brain Injury Peer Visitor

Per-Visitor-day-1Several months ago I was asked to speak to the Stroke Support Group which meets at one of the NCH facilities in Naples, where we live. Apparently, the speech was a success. One of several results of the speech was that I was asked to become a Brain Injury Peer Visitor in the hospital as a volunteer. The program hails from Georgia where they service 39 hospitals but NCH is the only Florida hospital participating. Hospitals in other states are becoming interested in this particular program.

The concept of the organization is to visit each brain injury patient during their in-patient rehabilitation stay. About 50% of those patients had strokes and a large majority of the others have suffered traumatic brain injuries emanating from falls or automobile accidents. Others had less prevalent but still serious brain issues. During the visit the volunteer delivers a customized packet of materials with information about the malady, lists of resources and suggestions to assist the survivor, the caregiver and their family and friends.

All of the volunteers in the program have themselves suffered a brain injury of one kind or another as I have. I have often said that there is reality and theoretical. Reality is me, for example – I have had a stroke and have gone through stroke treatment, stroke rehabilitation and in my case have been fortunate to have achieved a high level of stroke recovery. No matter how hard they try, be they physician, therapist, family or friend – no one knows what it is like to have a brain injury if they actually haven’t personally experienced it. I do not say that to be negative or out of malice in any way. We have “walked the walk” and that’s the point! Similarly, for me, the big “C” is theoretical because I fortunately have not had cancer.

The Peer Visitor Program brings those who “have walked the walk” to those who are “walking the walk”. And in our visits we try to bring some comfort, an ear to listen, perhaps a bit of questioning to open an intellectual door, and some personal experience that that can be valuable and comforting. Our objective as we walk out of the patient’s room is to leave the survivor, and perhaps the caregiver and family more uplifted and perhaps a bit more prepared to do the work of recovery than when we entered.

For more information about the program please go to www.braininjurypeervisitor.org and www.strokevictor.com.


Avoiding Caregiver Burnout

There are so many things for a caregiver to do after someone has a stroke that the caregiver can get overwhelmed and ultimately have burnout. Debbie, my wife and caregiver when I had my stroke eighteen years ago quickly realized that life cannot completely revolve around me, the survivor. While it is a typical situation after a traumatic event which a stroke is, it’s not healthy or productive.

A way Debbie found to avoid burnout was to maintain her outside activities. Debbie continued to teach school and even kept teaching her Adult Education women’s exercise class several evenings a week.

She recommends others do the same. However if the caregiver is employed you might let the supervisor know about the situation and hopefully get a bit of slack. In this manner the caregiver will not be in an overly stressed out situation if during the work day they have to make calls or do other caregiver tasks having nothing to do with work.

Other factors in avoiding burnout were treated in a study I found which was published a few months ago in Stroke Connection, the American Heart Association publication. The study noted:

  • That “older, active and confident caregivers were the happiest;”
  • Being and staying in better physical health was important to avoid burnout;
  • And continuing with hobbies and activities as Debbie did was most helpful to caregiver well being.

Another issue in burnout is personal caregiver stress. I found a study out of Northwestern Medicine which addressed this issue and found that-

The greatest amount of stress emanated not from the patient, but rather from friends and relatives. I was frankly surprised. Relatives and friends often showed, “a lack of understanding and help” according to the study. That actually could be a threat to the caregiver’s own well being. Clearly, not good!  Debbie said that though she fortunately didn’t experience that stress she met others who had. The stress came from second guessing which can often be very emotional and destructive.

And finally family tensions in connection with money and long-term financial considerations can lead to caregiver emotionalism and ultimately burnout. All, less than constructive!

Hail the caregiver and give them support, not aggravation!


unnamed

Author Bob Mandell is a stroke survivor and the author of the forthcoming book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor which will be published in February 2015.

The picture is of Bob and his wife caregiver, Debbie


800,000 Strokes – Where Are The Strokeologists?

THE PATIENT PERSPECTIVE

Advocacy: There is a huge need for focus and dedicated resources. Can it be? – Is it possible with nearly 800,000 strokes annually and millions more living with the after effects of earlier ones? Yes, there aren’t any strokeologists – that’s my word. And with the coming demographics, the numbers are going to explode over the next several years. It will get worse!

WHERE ARE THE STROKEOLOGISTS?

Stroke isn’t sexy! Actually it’s downright depressing. SO,

As a stroke survivor I believe the entire field of stroke is dramatically underserved in awareness, education, research dollars, singularly focused healthcare personnel, development efforts and fund raising.

Everything! The whole shebang!

Yes, of course I know that cardiologists and neurologists treat stroke. But that’s different. Brain, heart! These medical professionals treat many diseases – not just one.

No focus!

Yet the disease is very complicated. Why?

  • No two strokes are exactly alike.
  • This is a customized disease!  When you get customized clothing it’s the best, in heath care it’s the worst.
  • There are all kinds of outcomes and collateral damages. None the same!
  • There are many kinds of strokes, not just one; two broad types of strokes,

Clots termed Ischemic strokeso   And there are different types of clots;

Embolic and Thrombotic strokes, large and small vessel strokes.

Bleeds termed Hemorrhagic strokes.

Doesn’t that all sound complicated? Damn right!

What is missing is a substantial body of healthcare practitioners and researcher’s who get up every morning saying:

“The only thing professionally that I am focusing on today is stroke”.

That’s what we need!

An “orphan disease” – let’s bring it in from the cold!

TOGETHER – LET’S BEAT STROKE!

 


Improving Clinical Research To Improve Patient Outcomes

DISRUPTIVE INNOVATION IN CLINICAL RESEARCH RESULTS IN DRAMATICALLY IMPROVED PATIENT OUTCOMES AND INCREASED PROFITS  A PATIENT PERSPECTIVE

OUTLINE

ABSTRACT: Clinical research needs a large dose of disruptive innovation!

  • Clinical research – an enormous area
  • Growth engine in the pharmaceutical, biotech and other healthcare areas

o   Organic growth through research – an important element in financial valuation of medical enterprises

o   Time is money

THE PROBLEM

  • Public has little knowledge or understanding of process
  • Public has little knowledge the benefits of participating in research
  • Public has little understanding of access
  • Public has negative misperceptions regarding process

AS ACTIVE PATIENT – MY PERCEPTIONS OF CHANGES NEEDED

  • Disruption in current process leads to constructive innovation
  • More effective recruiting
  • New reimbursement and patient plans
  • Training of front line personnel
  • Overall faster process

RESULTS HELP US ALL

  • Faster approvals result in medical innovations and improved patient outcomes
  • Faster study determinations result in improved corporate financial performance impacting stock valuations and bottom lines

 

WE ALL WIN!