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


A Common Sense Approach – Functional Medicine

Practicing after stroke therapy

Practicing after stroke therapy

Functional Medicine (FM) – a new term to me and perhaps to you! It was highlighted in a recent article in Florida Weekly (July 8, 2015). It turns out that I, admittedly unwittingly, have been practicing the elements of FM for years. This approach seeks to combine the best of integrative medicine with the best of traditional approaches. In my book Stroke Victor, How to Go from Stroke Victim to Stroke Victor I described my approach to “pushing the pencil” of my stroke recovery by utilizing integrative techniques as one thing to beat the many plateau’s I endured.

Additionally, I took several additional steps beyond as do many others. These steps include getting “real” about a healthful diet and physical fitness. Many adherents of this approach subscribe to the idea that diet and fitness are a natural extension of this approach. I got my weight down to what I had weighed when I graduated from Ft. Polk, LA basic training many moons ago. I have to say that when I tell people that fact they find it quite remarkable. To me, it was common sense – if you are disabled isn’t it easier to move around if you have less to move?

Similarly with lifestyle considerations, being more fit is better than less fit. Again to my way of thinking it makes you more mobile. I try to work out daily, even when traveling, but usually go to the gym five or six times a week as life sometimes gets in the way.

With all of this good old fashioned common sense, what prevents people from adapting this lifestyle? First money – most integrative medicine is done on a self-pay basis since most insurances including Medicare are quite stingy in their coverage’s of integrative techniques. While slowly changing as some well-known hospitals like Johns Hopkins and the Cleveland Clinic get behind the FM movement, change is slow. Dr. Mark Hyman, Director of the Cleveland Clinic Center for Functional Medicine, believes that FM will be “more mainstream in another ten years” according to the Florida Weekly article.

Then there is personal disciple – changing our eating and fitness habits do take some effort and sacrifice. Most of us enjoy rich food which is tasty but which put the pounds on and fast food which, likewise, tends to be highly caloric and full of fat. So there is sacrifice! And truthfully, how many people truly like to work out? Some like my wife, Debbie do, but not many!

Still doesn’t it make long term sense to treat our bodies with more respect and love? For those of us who are disabled after stroke, for example – we each know that we have taken a big hit –is it prudent to risk any more hits?


Going to Holiday Parties After Stroke

4th July 34th of July and the summer hold the prospect of an invitation to a sharing party. You typically will be asked to bring a food item, dessert, salad or appetizer depending on the menu and group. That’s always great fun! In Naples we have good friends who have their 4th of July party at their condo overlooking the Gulf where one can then see several firework displays after dark.

For those of us who have a disability, the invitation can present a special problem. Don’t let it! Of course you can go to your local supermarket and purchase something – a salad or a pie or cake, but that is not my style.

As I mentioned in my book, Stroke Victor, one of the reasons that my wife, Debbie answered my personal dating advertisement 22 years ago in the Greenwich Time was that I said I could cook. I have always specialized in quick cooking and generally have created my own recipes or modified others’ to make them easier to execute, more healthful or tasty.

If you are still doing stroke rehabilitation you might want to ask the occupational therapist to assist you in cooking skills, if they haven’t done so already. If you acquire these skills after stroke you are more independent, something very important to me and most likely to you.

After stroke I purchased a pair of titanium scissors which I find easily cut thru the plastic bags that contain the vegetable part of the recipe.

I have several recipes for 4th of July barbeques or parties which are handicap friendly, therefore super easy and have without exception proven very popular. I thought that I would share my coleslaw recipe – every holiday barbeque needs a slaw!

Stroke Victor Slaw – for 6-8 people

16 oz bag of bought coleslaw mix
5-7 oz stick cut or grated carrots which can be purchased in a bag in the produce aisle
½ cup of brown raisins
½ cup golden raisins
1/2 cup Marie’s Coleslaw Dressing

Mix all ingredients together in a large bowl and then transfer the salad to a clean serving bowl. Don’t forget to use a non-breakable bowl with a cover if it has to be transported. Rubbermaid brand bowls are sold in the supermarket.

Bingo – That’s it! (I have to admit that the salad dressing has a few more calories than I sometimes mention. It’s a holiday – Go For It! Want to make it extra fancy for the holiday – cover the mixed slaw with Craisins to get a festive red look. If you add the Craisins you can reduce the raisins in the recipe by a little but that’s to taste. If you like the slaw to be juicier, add a bit of the extra salad dressing.

I’m talking easy – enjoy! For more guests, just proportion the recipe up 50% or double it and then use the entire bottle of salad dressing. You can add a few spoons of water to keep the salad liquid, if desired.

This easy and delicious homemade recipe for a stroke survivor and their caregiver will make you a party hero! I will be posting other easy to make recipes in this blog in the future.


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.


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.


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.


PROBLEM – With a disease where “time loss is brain loss” – do you have a Stroke Readiness Plan?

STROKE VICTOR SOLUTION

Develop a Stroke Readiness Plan which includes at a minimum understanding the signs of stroke – F.A.S.T. and if it appears that there are stroke symptoms, then know where to go, in detail. WHY? “All hospitals are not created the same”.

Mandell ExcersisewebYou, your spouse, partner or other community member has a Stroke. You want to go to a hospital with a certified Stroke Unit “with as many of the bells and whistles as possible”. But just what does that mean? And where are they in your geography?

It means the stroke team has neurosurgeons, neuro-interventional radiologists, board certified neurologists and emergency physicians, and stroke certified registered nurses as leaders in stroke diagnosis, management, treatment and rehabilitation. You have to know that. In Florida for example, this is a Comprehensive Stroke Center, or whatever they call it in your geography. And as a Plan “B” you want to know where the nearest Primary Stroke Center is located.

This can be quite complicated and you may not want to solely rely on EMS to make the location decision.

The difference between the two types of centers is the amount and type of interventions that the hospital can provide. The Comprehensive Center, of which there are only about thirty in Florida, can provide the fullest range of interventions. The Primary Center, of which there are more, can provide some, but not all interventions. At larger hospital systems one location may be certified as a Comprehensive Center, while other locations are certified as Primary Centers, and then other locations may have no certification at all. Beyond a shadow of doubt, some is very much better than none.

Then there are different certifications. There are State Certifications and there are Joint Commission (JCAHO) certifications. The JCAHO certifications are voluntary so many of the State Certified Stroke Centers have not chosen to participate. In Connecticut there were 22 Primary Stroke Centers certified by the Connecticut Health Department but only 9 of them were JCAHO certified. Their website states,

“The Joint Commission accredits and certifies more than 20,500 health care organizations and programs in the United States. Joint Commission accreditation and certification is recognized nationwide as a symbol of quality that reflects an organization’s commitment to meeting certain performance standards.”

As Part of the Plan you might want to consult your Family Physician or Internist knowing these designations. An informed patient is always appreciated and likely to be more successful!

For more details and other aspects of a Readiness Plan please consult my forthcoming book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor.


PROBLEM – Overwhelmed by a stroke to yourself or a loved one!

STROKE VICTOR SOLUTION –Coaching for Stroke Recovery. One to One personal, customized, sensitive and empathetic assistance from someone who has “walked the walk”!

Caryn McAllisterwebYou, your spouse or partner parent or family member has had a stroke! Now what? You are overwhelmed with things you no little or nothing about.

A place to turn

Enter the Stroke Victor Coach – a service to help in finding the path to recovery! Coaching the patient, coaching the caregiver!

We were in your shoes – “We walked the walk, learned some things, now we are talking the talk.”

Writing my book and interviewing many good folks I realized that so many are overwhelmed by the sudden new situation – a Stroke in their mist. Where to turn and what to do – suggests the need for an experienced, knowledgeable friend and coach to help guide you or your loved one through the process towards recovery.

We can talk about your situation and needs and then fashion a plan, understanding that flexibility is required and we are dealing with “a work in process”.

Please call 239-249-9575 or email me bob@strokevictor.com for a quick response.


PROBLEM – Lack of knowledge regarding what really can be achieved! – Embrace little understood innovative recovery options to supplement traditional approaches.

STROKE VICTOR SOLUTION – Forthcoming book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor explores innovative and holistic approaches to maximizing patient recovery. What are the opportunities? How to gain Victor status and how a survivor can be helped!

Caren Computer RehabwebThe ultimate “how to” book – How to Go from Stroke Victim to Stroke Victor. Learn practical game changing lessons, techniques and VITAL NEW INFORMATION – what really can be done!

Utilizing little known innovative therapies, strategies, and a mind/body mentality the “Stroke Victor” pushed his recovery well beyond what was expected. Learn the tricks, techniques, devices, mental games and philosophies that will help every stroke victim have a stronger recovery and ultimate healing.

Sex, travel and post-stroke fitness, just three of life’s simple pleasures, are some of the many “real-life” subjects and lifestyle issues treated in “Stroke Victor, How to Go From Stroke Victim to Stroke Victor “the dramatic, poignant, sometimes funny, and no-holds-barred new book that for the first time tells, in straight-forward language, what a stroke feels like and how to “beat it.”

Bob and his caregivers experienced frustration, “dead-end” paths, recovery plateaus and bad advice after his near-death stroke. Come to understand the one-at-a-time, day-at-a-time small, sometimes tiny victories a stroke victim needs to slay depression, and then move forward. Follow this fact filled, informative and realistically holistic approach to beating the odds after stroke!

Join The Stroke Victor from his days as a paralyzed, hiccupping, barely speaking massive stroke survivor living in a Connecticut nursing home to journeys to Australian and New Zealand vineyards where he and his caregiver wife enjoyed wine tastings and tours, jet boating in Tasmania, Americas Cup practice sailing and music at the Sydney Opera House. And what’s really important – you can make strides also! I’m not saying it’s easy, but you can do it!

“Look, I know all too well that having a Stroke is “no walk in the park” – far from it!

BUT, I AM ALSO HERE TO TELL YOU – IN NO UNCERTAIN TERMS…

There can be a rich life after stroke. It may be different – Embrace the New Us!

WE ALL CAN BE STROKE VICTORS!”