Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “ALS”

Being Humane

Have you ever watched someone suffer in chronic or terminal pain?  Have you ever seen a young patient with tremors that just would not stop?  Have you ever witnessed someone not wanting to eat, losing weight, their bodies wasting away because of the side effects of other medicines meant to save their lives?  If you could wave a magic wand over the patient, to make any of these or other symptoms, just magically disappear, would you do it?

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Then many states will have that opportunity for voters to wave their “magic wand”, AKA the right to vote, to approve legalizing medical marijuana, joining 20 other states who have decided that it is a humane need to provide comfort and relief to patients suffering debilitating diseases who cannot find relief otherwise.  Even if six more states approve medical marijuana use, still, almost half of the United States has no plans to legalize medical marijuana.

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Alzheimers, Cancer, ALS (Lou Gehrigs Disease), HIV, Osteoporosis, Multiple Sclerosis… we all know at least one person who has suffered with one or more of these diseases.  And we all have to agree, it is definitely suffering.  Suffering triumphs over quality of life, but it does not have to.  The fact is, and cannot be denied, marijuana would help every patient deal with the chronic side effects and pains of nearly every malady known to man.

At least three times in my life, had medical marijuana been available during my multiple medical crisis, I would have done much better.  I could never control my nausea with the prescription meds given during my cancer treatments.  The unbelievable pain I endured following my open heart surgery from having my breast bone cracked in half only controlled by a narcotic powerful to knock my unconscious… great way to deal with pain, huh?  Life-long chronic pain for late developing side effects when at its worst, taking up to 4 different drugs to just touch the pain, and give slight opportunity to sleep.  I can only wish I had the opportunity to have been able to use medicinal marijuana.

My father, who recently died from lung cancer, prior to his death, had been dealing with a lack of hunger issue.  Well, as we all know, one of marijuana’s awful side effects is causing hunger.  But fortunately, he was prescribed Marinol, to help boost his appetite, which it did.  Do you know what it did not do?  It did not make him a stoner.  He did not get high.  He ate.  It helped to improve his life.

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With all the benefits that medical marijuana has to offer, how could anyone be against helping a patient live a more humane quality of life?  There is absolutely no reason at all for anyone to be against this treatment option.  Yet they exist.  And their reasons are just as confusing and contradictory as their beliefs about the drug and its influences.

As a teenager back in the 1970’s, well after marijuana was mainstream, we were constantly taught, that cigarette smoking was bad.  Not just because of causing cancer, and heart problems, but because teen smoking was a “gateway” to smoking pot, which of course was a “gateway” to harder drugs and alcohol.  But was teen smoking made illegal?  Eventually.  Were teen smoking laws enforced?  There is not going to be an answer to this because enforcement of teen smoking is a joke, especially since many parent provide the cigarettes themselves.  But over time, we have gotten away from the “gateway to pot”, forgotten about the lethalness of cigarette smoking, and instead have now made the main “gateway” label, applied to marijuana.

That is right, several want you to believe that medical marijuana is going to be the gateway to harder drugs.  Alright, I know I am not being fair.  Of course those few actually mean “recreational marijuana”, not medical marijuana.  But they do believe the legalization of medical marijuana will lead to the legalization of recreational use.  And this is what the anti-medical marijuana people want to prevent.  They want patients who are suffering, to continue to do so, so that some day, other people who just want to smoke pot for the giggles of it, which still would not effect them because they were neither patient or user, to continue to suffer.

This is the only argument that those against medical use of marijuana can state.  They do not want recreational use of marijuana legalized and they are afraid that will be the next step if medicinal use of marijuana is legalized.  And this is a stupid thought process.  And for that selfishness people will continue to suffer needlessly.

Cigarettes are known to kill people.  They definitely killed my dad and grandfather just to name two people I knew.  Have we made them illegal?

Alcohol is known to kill people.  I have buried too many to count.  Have we made that illegal?  Oh yes, we tried that.  It did not work.

Marijuana to my knowledge has not killed anyone.  I definitely do not know anyone who died from marijuana usage, medical or recreational.  Why is it illegal to this day?

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My state of Florida is one of the latest states to finally consider the humanity of access to medicinal marijuana.  On November 4th, voters will finally be to help patients deal with chronic pain, side effects, and terminal illnesses.  Spearheading the movement in Florida is attorney John Morgan who advertises his campaign with the loss of a loved one who needlessly suffered not having access to a drug that definitely would have improved the quality of life.

The sad thing is, in anticipation of approval of Amendment 2, the legalization of medicinal marijuana in Florida, many Florida communities have already taken steps to prevent accessibility to prescription marijuana.  In Naples, a very conservative community, their city council just banned any dispensaries within city limits.  In other words, NIMBY (Not In My Back Yard).  Again, the only argument given is that medicinal marijuana will lead to recreational, and Naples does not want that.  So if you have chronic health and pain issues, perhaps Naples is not going to be the place you want to rest and convalesce, especially if you need the convenience of a dispensary for something although hopefully legal, just will not be available there.

Another unusual comment as to the denial of using medicinal marijuana came from an unusual source.  The president and CEO of the Naples Community Hospital Healthcare System, Dr. Allen Weiss offered an op-ed piece in a recent Florida Weekly…

“I believe medical marijuana is a solution to a problem that does not exist.  The danger in allowance of ‘medical’ marijuana is that it could act as a starter drug in our nation.  There are already existing, safe, easy-to-take medications readily available and prescribed by oncologists and physicians (this sentence was shortened for content, but this was the gist of the comment).”

Do you see this?  Is this really the reason a major health leader is against something that would make a difference to the quality of someone’s life?  Worried about gateway usage from someone chronic or terminal?  Or is the real reason that the pharmaceutical industry stands to take a huge loss from loss of addicting prescriptions for pain and depression for a plant we all know would cost 1/100 of what many generic drugs actually cost?

I am not a pothead, or stoner.  And I do not care if someone else uses the drug for recreational use.  But having been on opioids and other prescription medications for chronic and acute pain, all having various side effects of their own, three times in my life, the odds are in my favor that I will some day face that need again.  And I am hoping that the voters of Florida do the right thing on November 4th, and vote yes on Amendment 2, and legalize the human use of medicinal marijuana.

Reefer “MADNESS!!!”

In 1936, a FICTIONAL documentary was released about the addictive nature of marijuana.  It was called “Reefer Madness”.  I was unaware, as probably most people, that the alarmist anti-pot propaganda was re-released as a movie musical in 2005.  Admittedly, I could only tolerate watching even the original movie for about ten minutes, which was ten minutes I would never get back in my life.  Over my lifetime though, I have seen plenty of films using marijuana, pot, hash, cannabis, whatever you want to call the plant.  And I had never seen anyone smoking pot in these films as anything more than just real happy.  One of my favorite movies is “The Breakfast Club” and there is a scene where the students, who are locked in the library on a Saturday morning for detention, the “stoner” in the film invites all the others to partake in his stash.  It was one of the best scenes in the movie, because for one brief moment, the walls separating all of their differences with each other were brought down, allowing them all to enjoy that moment laughing with each other, without any form of discrimination.

I do not want this post to be about recreational use of marijuana.  I am forty eight years old and in my lifetime I have never heard of anyone dying from using marijuana.  While I do not smoke pot, I am not against anyone wanting to smoke it.  I know I would rather inhale second hand pot smoke than second hand cigarette smoke and die.  At least I will not get cancer from marijuana.

Over the summer, I moved to Florida.  One of several states that has yet to legalize medical use of marijuana.  There are some instances that Florida will allow it, but in general, it has not been legalized in Florida.  There is a proposition, called #2 on the ballot for this Fall’s election.  I fully support the medical use of marijuana, and I want to encourage anyone reading this post to share it.  And if you live in a state that has not made that leap to medicinal use of marijuana and is waiting for an election to do so, it is time to get over the false stigma of marijuana use to allow needless suffering of patients.

Cigarettes kill.  Alcohol kills.  Texting while driving kills.  But this is tolerated because it benefits big companies like Tobacco, Alcohol, and of course the big telecommunication companies.

Chemotherapy has the ability to kill.  Depression meds have the potential to make you suicidal.  Blood pressure pills can kill.  Pain medicines can lead to death.  And then of course there is the overdosing of sleeping pills.  But this is okay because big pharm companies only care about the health of the patients that take the meds and want you to trust that their drug is best for you.

But marijuana does not kill.  Hmmm… what big companies have a stake in marijuana?  Well evidently, now some pharm reps are recognizing the national movement to legalizing medical marijuana and want to be first in line to build their plants.  After all, big pharm stands to be the biggest loser in the legalization of medical marijuana because many patients would no longer need the pharmacy company’s overpriced drugs and would need to replace their revenue with something.  And of course, with approval and success of the medicinal marijuana companies, I agree, it probably would not be long before we followed Colorado and Washington state and legalizing recreational use because once the factories are already established, in theory they would have the biggest jump on mass production.

There is a problem however.  The United States has not legalized the use of medical marijuana.  Instead, they simply allow each state to make the decision, and then the Feds are encouraged to concentrate on more severe issues.  So if it is prescribed, in theory, you could face Federal charges for medical use of marijuana, but not likely.  And if your state approves the medical use of marijuana, that should be the end of the story.  But now it is coming out, well in advance of the election, communities are passing their own regulations, regardless of what the election results are.  Local politicians suffering from NIMBY (not in my back yard) are already passing regulations to deny any medicinal pot shop to open within city limits.  They hide behind the “we don’t need the element that marijuana will bring to our community” attitude.  They totally do not mention the issues with illegal pot use for people who just want to get happy.  But they are against a drug that would benefit patients who are suffering from severe and painful maladies (physically and emotionally) such as ALS, cancer, Alzheimer’s, MS (multiple sclerosis), and other maladies.

So how bad is marijuana?  I have already stated that it is nowhere near as deadly as the big three I listed earlier, cigarettes, alcohol, and texting while driving, and none of those are illegal for recreational use and provide no medicinal benefit.  But let us take a look at some classes of prescription drugs and compare their side effects to that of medicinal marijuana.  You be the judge of which would be more beneficial and safe, and most importantly, improve the quality of life for a person suffering with their morbidity or mortality.

Treating Nausea, Loss Of Appetite, Vomiting, Weight Loss, Muscle Atrophy

The following side effects of common drugs to treat these issues are listed as follows (from

Less common

  • Bloating or swelling of the face, arms, hands, lower legs, or feet, blurred vision, dizziness, headache, nervousness, pounding in the ears
  • rapid weight gain, slow or fast heartbeat, tingling of the hands or feet, unusual weight gain or loss

Incidence not known (this means that you won’t necessarily be told about these issues on the warning label of the drug)

  • Abdominal or stomach pain, agitation, black, tarry stools, bleeding gums, blistering, peeling, or loosening of the skin
  • blood in the urine or stools, chest pain, coma, constipation, continuing vomiting, convulsions, dark-colored urine
  • decreased urine output, depression, fainting, fast, pounding, or irregular heartbeat or pulse
  • general feeling of tiredness or weakness, high fever, high or low blood pressure, hostility, increased sweating
  • indigestion, infection from breathing foreign substances into the lungs, itching, lethargy, light-colored stools
  • lip smacking or puckering, loss of consciousness, muscle twitching (MS sufferers have enough problem with this)
  • no blood pressure, no breathing, no pulse, numbness or tingling in the face, arms, or legs
  • pain in the stomach, side, or abdomen, possibly radiating to the back, pain or swelling in the arms or legs without any injury
  • pain, tension, and weakness upon walking that subsides during periods of rest, pinpoint red spots on the skin
  • pounding, slow heartbeat, puffing of the cheeks, rapid or worm-like movements of the tongue
  • rapid weight gain, recurrent fainting, red irritated eyes, red skin lesions, often with a purple center
  • seizures, severe constipation, severe headache, severe muscle stiffness, severe vomiting
  • sores, ulcers, or white spots in the mouth or on the lips, stupor, sudden severe weakness
  • swelling of the face, ankles, or hands, total body jerking, trouble with speaking or walking
  • troubled breathing, twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
  • uncontrolled chewing movements, unusual bleeding or bruising, unusually pale skin
  • vomiting (HEY!  Wait a minute!  If you are taking this to reduce vomiting and nausea…)
  • yellow eyes and skin

The list actually continues.  Call me a silly goose, but if I am already suffering from side effects, why would I risk taking something that could actually make it worse for me, when all I would have to do is pop a pill, or even pack a pipe, or eat a cookie with the medicinal marijuana?

Let us take a look at another drug class, for depression.  The object is to make the person not sad anymore right?  Here are some side effects of common antidepressants (according to



  • agitation, chest congestion, chest pain, chills, cold sweats, confusion, difficulty with breathing, dizziness, faintness, or lightheadedness when getting up from a lying or sitting position
  • fast, pounding, or irregular heartbeat or pulse, muscle pain or weakness, absence of or decrease in body movements, bigger, dilated, or enlarged pupils (black part of the eye)
  • convulsions (seizures), difficulty with speaking, dry mouth, fever, inability to move the eyes
  • incomplete, sudden, or unusual body or facial movements, increased sensitivity of the eyes to light, poor coordination
  • red or purple patches on the skin, restlessness, shivering, sweating, talking, feeling, and acting with excitement and activity you cannot control
  • trembling or shaking, or twitching, back, leg, or stomach pains, blindness, blistering, peeling, or loosening of the skin
  • blue-yellow color blindness, blurred vision, constipation, cough or hoarseness, dark urine
  • decreased frequency or amount of urine, decreased vision, difficulty with swallowing
  • electric shock sensations, eye pain, fainting, general body swelling
  • headache, high fever, hives, inability to move the arms and legs, inability to sit still, increased thirst
  • incremental or ratchet-like movement of the muscle, itching skin, joint pain, light-colored stools
  • lockjaw, loss of appetite, loss of bladder control, low blood pressure, lower back or side pain
  • muscle spasm, especially of the neck and back, muscle tension or tightness, painful or difficult urination
  • painful or prolonged erection of the penis, pale skin, puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
  • raised red swellings on the skin, the buttocks, legs, or ankles, red, irritated eyes, sensitivity to the sun
  • skin redness or soreness, slow heart rate, sores, ulcers, or white spots on the lips or in the mouth
  • spasms of the throat, stiff muscles, stomach pain, sudden numbness and weakness in the arms and legs
  • swelling of the breasts, swelling of the face, fingers, or lower legs, swollen or painful glands
  • tightness in the chest, unexpected or excess milk flow from the breasts, unusual bleeding or bruising
  • unusual tiredness or weakness, vomiting, weight gain, yellowing of the eyes or skin

The list continues on and on.  But also includes “may create or increase thoughts of suicide”.  Isn’t that why you take an antidepressant so that you do not have those thoughts in the first place?

No matter the class of drugs that are supposed to help ease our pains, help us sleep,  keep us calm and happy, make our heart pump properly, every drug carries with it a similar list of things that could go wrong taking it.  We are willing to risk our lives taking big pharm’s prescription drugs.  Marijuana is not without its risks, but nowhere near the level of prescription drugs or the way marijuana has been demonized.

I did not have the option of using medicinal marijuana when I was dealing with nausea back when I dealt with my cancer.  I had plenty of friends who were willing to help me with this if I ever made the choice to do so.  I did not have the option of using medicinal marijuana when I was recovering from my heart surgery, or dealing with the many painful issues of my long term survival.  But I am sure that would have been better than taking all the opiates and other addictive pain killers to control my pain.  Do not get me wrong, I needed my pain controlled and I am thankful that those meds did their job.

But as I watched my brother-in-law whittle away to nothing but a shell from the ALS that would take his life, as I watched my father fade away in extreme pain to lung cancer, I cannot help but wonder, how much more humane the ends of their lives would have been, had it been legal to give them medicinal marijuana.  My father towards the end had been given Marinol, a form of the medicinal marijuana which was meant to increase his appetite which had dwindled down to nothing.  It did help with the appetite, but was not enough to deal with the pain.

It would be a shame to deny another humane option to treat those who suffer from painful debilitating and fatal issues, just because someone else is suffering from NIMBY when in reality, the majority of us already have it in our backyards currently illegally.  But where are the people screaming about enforcing the law on illegal pot smokers (I do not suggest that because I believe our system is bogged down enough on this particular war on drugs)?  And if you do not support medical marijuana because you are afraid of the seeking and approval of recreational marijuana, then you are unnecessarily making people with ALS, cancer, MS,Alzheimer’s and many more suffer from their diseases.

It is my hope that Florida residents do vote “YES” to Prop 2, legalizing medicinal marijuana.  There are just too many ill people who would benefit from its use.

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.

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