Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “August, 2014”


There was a custom in the mid to late 1980’s, usually while driving, when spotting a Volkswagon Beetle (for those that need the image… recall “Herbie The Love Bug”), if you had a passenger in your car with you, and either of you spotted one of these “bugs”, it would become a race who could curl up a fist and either punch the other person in the leg or arm. And it was usually a good wallop too since participants were usually well into their teen years.

As time went on, the Volkswagon Beetle (bug) disappeared. And so did the frequency of “bug” sightings and assaults. This aggressive car game had gone the way of the Beetle.

For me personally, I did not pay attention to the return of the Beetle, which resembles its earlier design and never seems to change in appearance from year to year. But somehow, along with its return, came the return of the warcry “PUNCHBUGGY!!” and the painful reminder.

My memory had been refreshed during my daughters’ visit with me this Summer. Within the first day of their visitation, I was surprised to see, hear, and feel, they had learned a game that I thought had been long gone. And there it was…”PUNCHBUGGY!!!” followed by one punch and then completely off-guard another “PUNCHBUGGY!!!” came from the other side of me, along with another hit.

Who taught my daughters this game? Bad enough to get one, but to get it from two at the same time? They worked well as a team too. One daughter would hear the other, and then load up her fist and follow up. I did not stand a chance.

My daughters enjoyed playing “PUNCHBUGGY!!” with me. And I think I got hit with it every day that they were here. And as much as the cry of “PUNCHBUGGY!!!” came out, even though it was from my daughters, I did grow weary of it, not to mention, quite sore.

My daughters returned home to their mother last week. Funny but I do not recall paying attention to Volkswagon Beetles before their visit as I do today. But as I waited for my car to be unloaded from the Autotrain, I counted fifteen Beetles being unloaded from the train. On one hand, grateful that my arms would not be completely limp and in pain, while at the same time, yes, wishing I would hear “PUNCHBUGGY!!!” again.

Such as life. This is one of the lighter stories of divorce. This is about a game, and how much it causes my heart to miss my daughters. Every day now, I see at least one “bug”, and in my heart and in my head, I yell, “PUNCHBUGGY!!!” to myself, and instead of a punch, I get a smile.

I cannot wait until our next visit.

The Benefits Of A Challenge

Hodgkin’s Lymphoma is considered a rare form of blood cancer. I know this, because I battled HD over 24 years ago. My doctor back then, I will call him Dr. S., misdiagnosed me as having a common cold. Oops, imagine that mistake. The reality, unless you were being checked for breast cancer or skin cancer, many doctors had no idea what to look for.

The upside was that for what little I knew about HD, the cure rate was considered high. It was not 100% curable, but a great cure rate nonetheless. But unlike breast cancer, lung cancer, and even other major ailment such as cardiac disease, diabetes, Hodgkin’s Lymphoma did not, and to this day does not get a lot of publicity for fundraising such as the prior mentioned ailments.

I recall seeing one commercial, during late night television, which featured a young female, a common demographic for a Hodgkin’s diagnosis, lying in a hospital bed in the middle of Manhattan. Of course, as is common in New York City, people just go about their business, not paying any attention to the sick young women on a hospital bed in the unusual location of a NYC street, or why she was there. As goes the knowledge of people battling Hodgkin’s Lymphoma.

And unlike the attention to a particular cancer paid, when celebrities such as Michael Douglass or Cheryl Crow, or even Lance Armstrong (sorry, I know, but performance enhancing issues or not, he did battle a serious cancer), there have been plenty of celebrities who have battled Hodgkin’s Lymphoma. And as each one is publicized, I hope that one celebrity becomes the one that finally will be the one who can bring Hodgkin’s to the forefront for a cure, the first cancer with a 100% cure rate. The most noticeable celebrity right now facing Hodgkin’s Lymphoma is Def Leppard guitarist Vivian Campbell.

Mr. Campbell is finishing up his second treatment regimen, the first treatment only putting him into remission temporarily. He has continued to play and tour with his bandmates. As someone who worked through his HD treatments, I can truly appreciate his efforts to continue to tour. But here is an example of someone who should clearly have the money and resources available to get the best treatment for a curable cancer, and yet, he has struggled. Perhaps with a little more research, the better and more effective cure can be found. But that costs money. To get money, you have to bring attention to the cause.

Which is why I have to admire the ALS Ice Bucket Challenge. I was challenged today by another local author, Stephen Kaufman to complete this challenge, and issue a challenge of my own to other individuals. The task, dump a bucket of ice cold water over my head, or donate $100 to ALS. This challenge has received mixed reviews as many cynics felt that doing this task was not going to do anything for the benefit for ALS research. Many felt that all the task was doing was giving people their Youtube fame on Facebook, and not much would be done for ALS research or patients.

But the truth is, people have not only been doing the challenge, but also making the donations, and many making more than just the $100 donation. Celebrities are also joining in the challenge from rock stars to athletes to politicians, to actors, many making enormous donations to fight ALS. Even ALS patients themselves are getting into the act.

As personal as my fight with the rare blood cancer, Hodgkin’s Lymphoma, my fight with ALS became personal several years ago when a co-worker was diagnosed with ALS. Ron would be the first person I would encounter, unfortunately not the last. Two years later, my brother-in-law Mike would be diagnosed following an unusual slurred speech development. If only our lighthearted concerns of being too much Jack Daniels would have been the case, unfortunately it was Lou Gehrig’s Disease.

With this being my brother-in-law, someone I was very close to, almost as a brother, I saw first hand the Hell that an ALS patient goes through as their body slowly destroys itself. One of the worst parts of the disease is that the mind is relatively in a state of complete awareness as to what is going on, but as the body slowly loses its ability to eat, swallow, speak, grasp, stand, the mind can do nothing about it. Even more frustrating according to Mike, was the inability for him to communicate. While technology would provide an avenue for him to speak, an app for his Ipad, that when he either typed words or wrote words with his finger tip, the Ipad would vocalize for him, this was not the same as being able to have just a regular vocal conversation.

Over time, the ALS became more evident in Mike, but it did not stop him from trying to do what he enjoyed. He continued to work through most of his illness, his employer accommodating him pretty much up until the end. He rode his motor cycle and finally made a pilgrimage to Ireland, a life long dream of his. At one point, he joined others, in an attempt to draw attention to ALS, by travelling to the Jersey shore in the middle of Winter, for a “polar plunge” into the Atlantic (the original version of the Ice Bucket Challenge).

It will be two years next month that Mike lost his battle. So today, I accepted my challenge, nominated four others to complete the challenge. And as many others, I will also send a check into the ALS Foundation as I have done in the past, in Mike’s memory.

It was noted via various media resources that last year alone, only $1.7 million had been raised for ALS research through various fundraisers. But in just the past two months, over $25 million has been raised through this Ice Bucket Challenge. Awareness for a rare and fatal disease has been made. Funds for research have been earned.

As someone who has battled another rare disease, I appreciate the efforts this cause has put out, and earned. I hope someone, every disease, regardless of severity, can find its own “ice bucket challenge” to help their cause.

F.A.S.T. – Recognizing A Stroke

While driving on a highway, a billboard (the old kind, not the Las Vegas flashing light kind), blared an attention-getting message in large, bold print. No pictures, just four large letters… F.A.S.T.

Fortunately for me, traffic was moving kind of slow at that time on Interstate 95 in Delaware, so I could at least make out that F.A.S.T. was not an advertisement, but a very important message. Below the letters, an explanation followed from the National Stroke Associaton. The message was to learn the symptoms of a stroke.

F = Face
A = Arms
S = Speech
T = Time, time to call 911

A stroke is when the brain is deprived of blood flow, either reduced or blocked, reducing much needed oxygen and food to the brain. And depending on which side of the brain that suffers the stroke, the opposite side of the body is affected. Now that you know what a stroke is, and most all of us know that a stroke is bad, let us get back to the message on the billboard.

Getting to the letters, and skipping right to the letter “T”, we are all told that time is the most important factor in dealing with someone who has had a stroke. My grandfather died following a stroke. That was back in 1966. Just two years ago, my stepmother suffered a small stroke. Fortunately for her, she was able to wake my father at 3am, and he realized that my stepmother was having a stroke and called 9-1-1. Then last year, following lung surgery, my father also suffered a stroke while in the hospital, but it was my brother and I who recognized it had happened. In the last two cases, time definitely played a factor in not only their survival, but recovery also.

With prompt recognition, proper medication can be administered to resolve the clotting issue that caused the stroke before the damage becomes too severe and irreparable. It is a huge mistake to underestimate your qualifications to recognize someone having a stroke. You do not need to have a medical degree to possibly save someone’s life. And the National Stroke Association could not have made it any easier than with four simple letters, and easy enough to remember. We discussed “T”. The first three letters are perhaps the most important as they are the most frequent and most noticeable symptoms of someone having a stroke.

F = Face

A stroke will often affect one side of the body. And the most visible part of the body to us, is a person’s face. Perhaps while having a conversation with someone, you might just notice the corner of the other person’s mouth drooping lower than the other corner (not to be mistaken for a frown). This is a noticeable droop. Perhaps the cheek area around the eye will also droop. You might happen to notice that depending on where you are standing, the person may not even see you or hear you (this was the case with my father as he could not see anything on his left side).

A = Arms

This should actually include legs, along with the arms, but again, the arms are the most visible appendage. Lack of use of only one arm, without any kind of injury to it, is symptomatic of a stroke.

S = Speech

A person having a stroke is likely to slur their speech. Provided there is no speech impediment or alcohol consumption, you cannot miss this sudden vocalization difficulty.

T = Time to call 9-1-1

You get the idea. Time is critical. My father’s stroke was not noticed by emergency personnel, but because my brother and I knew my father well enough, there were certain cognitive issues that we were able to question, and then F.A.S. became more noticeable. His neurologist was amazed that my dad would eventually recover from having had two strokes (one on the front and one on the rear, both on the right side). It was time that made the difference.

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