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.


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.


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/


Book review: Good news for those on the path to recovery from stroke

This marvelous self-help book is likely to save or extend a lot of lives. However, its central focus is enhancing the quality of life for those who have undergone lifechanging illnesses or injuries.

While the information and advice is primarily for stroke victims, Bob Mandell’s guidance can be applied to many different situations in which recovery from a disability is sought. His personal story is the engaging and inspiring trunk and branches of the book. On these branches, Mr. Mandell has hung the fruits of what he has learned.

For me, his most widely applicable piece of advice is the need to take responsibility, to question, to be an aggressive patient who challenges medical personal and especially conventional wisdom. Passive people are likely to be buried by their insecurities, by medical care bureaucracy and by accepting what’s immediately available or convenient rather than what is best for their recovery and rehabilitation.

Read more here

http://naples.floridaweekly.com/node/212459


Traveling After Stroke

Traveling-After-StrokeWe recently went North to see friends and family in Virginia and Connecticut. We flew to Baltimore non-stop, drove down to Virginia, and then drove up to Connecticut and back down to Baltimore to fly home. With after stroke mobility disabilities I try hard to get a nonstop flight even if it means driving a little extra from a less convenient airport. For example, Ft. Myers, our home airport does not have nonstops to many locations where we go. Instead of flying to Dulles Airport which would have been more convenient we flew to Baltimore/Washington (BWI). Then after a meeting, we drove in non-rush hour traffic over to Northern Virginia.

When flying, I always try to get an aisle seat, preferably near the front of the airplane. With Southwest, I indicate I need assistance and they give me a pre-boarding voucher. After a stroke, one always wants to do this.

When renting a car after stroke I try and rent a small or mid-size SUV. A disabled person is typically going to have less trouble getting into an SUV or Van than a sedan type car. We were traveling for eleven days so it was definitely important. Recognizing that those types of cars are more expensive I utilize Costco to rent cars. They have a search engine that allows members to compare prices among several competitors by car type. To protect our trip, I initially rent the least expensive SUV available when I book our flights. I then started checking back to see if there were price reductions as we got closer to our leaving date. Prices often change due to inventory and other factors as one gets closer to the date, sometimes going up and sometimes going down. This time we got lucky, as the price went down significantly due to what seemed like a price war between Alamo and Budget. At the end, the price for the SUV was just a few more dollars than a full sized sedan.

You have heard me say before that fitness is important to stroke recovery! When we travel we go to a fitness center nearly every day, as we did on this trip. We get a trial pass or pay for a daily or weekly pass depending on the specific situation. We always go to a venue where they have fitness classes for Debbie and a recumbent bike and other equipment for me. Typically we will look around either in person or on the internet for convenient fitness centers so as not to disturb our routine. If I don’t work out I start getting stiff within just a few days which means that my walking ability declines. That’s a no-no!

In Greenwich, CT where we went after Virginia we stay at the Hyatt Regency where we reserve a concierge level room. In my book, Stroke Victor, my after stroke book, I discussed the advantage of a concierge level room for someone with disabilities. If you wish, you can avoid going out to dinner by eating their buffet and reserve your energy for other more important or interesting things. You also get breakfast included.

Though Hyatt has disability rooms available, as do all hotels, we choose not to take advantage of this amenity because they are near the elevator, a sometimes more noisy location. That’s a personal choice as we value quiet. We have stayed at the Hyatt many times so I know that I am able to navigate the standard rooms. I get into the shower which is within a bath tub by holding on to the shower curtain bar. However, before doing so, I always assure myself that the bar is solid enough to be safe as a spot to hold on to.

These are some travel tips based on my experience for someone who has suffered a stroke but wants to live a full life! As always, these are my opinions, not medical advice.


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