Thursday, April 30, 2015

A medical cannabis program that does not allow plant material is a paradox...

After Easter dinner my younger brother Danny, age 50, came to me on the verge of tears to explain the difficulties he's having as a result of the progression of his neuro-muscular disease. He is not only having more neck pain and body aches, but increased loss of dexterity, muscle control, and muscle fatigue, resulting in more difficulties in writing, walking and feeding himself. He's also extremely frightened as to what the future holds. The memory of the living hell that our older brother endured is still fresh in our minds, even though Fred died almost four years ago from complications of the same disease.

My father unknowingly passed onto Danny and Fred the same disease that his father had (although it was undiagnosed at the time). Dystonia Musculorum Deformans developed in both of my brothers before their teens and got worse with age. It was more pronounced in Fred and he was affected more severely. Being a neurological disorder involving the muscles, some of the symptoms are similar to MS, but typically involve more twisting of the torso, tremors and shaking. Among other things, Fred lost the ability to speak as a teen. In his mid 40s he underwent cervical reconstruction surgery which saved his life but left him a quadriplegic. Having witnessed the hell that was Fred's life for the 11 years before his passing, I still can't appreciate the misery and frustration that was his existence. Stop for a minute and try to imagine life with a body that does not work, no effective means of communicating, but yet possessing a fully functional cognitive ability.

No one in our family was capable of caring for Fred those final years and had it not been for an angel named David who took him in and provided the constant care he needed, he would have wasted away in some cold and uncaring facility at the mercy of an overworked staff. I can't blame Danny for being afraid of the future. With my degenerating back issues and chronic pain, I'm afraid too. But I have a loving wife and children to look after me. Danny is single and on his own.

My brother and I will not be helped by SB3 (in its current state). Our conditions were among those that were cut by amendment when SB1182 was debated and passed by the PA Senate last fall. By its very nature, a list is destined to exclude someone. In the case of qualifying medical conditions for medical cannabis, many someones. Conditions deemed acceptable for treatment with a plant, generated by politicians rather than doctors is a shameful way to determine whose health takes priority. The decisions on who to provide cannabis to and how to best administer it should be the purview of medical professionals.

Our Legislature is also resistant to allowing cannabis plant material to be used. No state that has adopted a medical cannabis program has done so in a perfect way. But of the 23 states and the District of Columbia who've adopted a medical cannabis program, only two do not allow for plant material to be used. In New Jersey, plant material is essentially the only option for those patients. A medical cannabis program that does not allow plant material is a paradox. I need you to fight for us and the countless others who may not have the voice to do so. I need you to not accept anything less than a bill that covers as many sick and suffering PA residents as possible, and that allows those patients to use the cannabis plant as they and their doctor sees fit.

I've read how medical cannabis can help people with Dystonia in managing their symptoms, especially muscle rigidity, spasms and tremors. That, in turn, reduces pain and muscle fatigue. Beyond reading about it, I've met people with Dystonia who use cannabis for those symptoms and others. One in particular uses it illegally in PA, but since he lives in Philadelphia, where possession of small amounts of cannabis have been decriminalized, he feels comfortable enough in doing so. It's far from a perfect scenario for him, in that he still has to rely on the black market to get his medicine. And as soon as he leaves the city he's back to the reality of a state that still condemns people for possession and use of a medicinal plant.

~Luke Shultz

Wednesday, April 22, 2015

No Patient Left Behind

So I don’t usually cry when I talk to reporters... I try really hard to keep my composure because I know if you cry in front of a camera, it doesn’t matter how red my nose gets, or how much my mascara smears, it doesn’t matter if the words that are coming out of my mouth even make sense, if I’m crying, it’ll make the cut. I can spurt out fabulous quotes, along with mind-blowing insight, but none of that will be in the news clip, if the alternative is a candid shot of the crying mother.

I nervously watched Kendra Nichols’coverage of the committee vote yesterday, hoping that I didn’t come across as too much of a flake. And then there it was, the teary eyed, blubbering mom, pleading with anyone who would listen, “Help them all.” I was embarrassed, of course, and had no intention of sharing the clip, except with a few of my fellow Campaign for Compassion team members, although I knew darn well, Les Stark, our resident media hunter would find it and share it by the end of the night.

Not many people know this about me, I’d like to think I hide it well, but I get nervous all the time. Sometimes I feel as if I’m choking on my own self-doubt. I can waste hours of my time stewing over something stupid that I said or did, obsessing over what I should have said. Naturally, that’s what I did for the remainder of last evening. But I woke up this morning with the intense realization that each tear I shed over the thought of my fellow man suffering, is a tear shed for very good reason. There is no shame in being completely overcome with emotion at the thought of an entire community of my friends, my fellow advocates, my kindred spirits, being denied compassionate use of cannabis because their disease is excluded from SB3. And yes, I know the board can add more conditions, but in that moment of shear terror when I imagine them continuing to suffer, on the verge of slitting their own wrists, just to finally be free of their pain, I am not comforted by that possibility.

I think now that what overwhelms me almost as much as the thought of the vast amount of needless suffering in our state, is the fact that there is no one representing these people. When our elected officials take office, they also take an oath to uphold the state constitution. Article 1 of this constitution states,

“All men are born equally free and independent, and have certain inherent and indefeasible rights, among which are those of enjoying and defending life and liberty, of acquiring, possessing and protecting property and reputation, and of pursuing their own happiness.”

This likely means that each district that elects their representative is perhaps under the assumption that said representative vows to serve each one of them, whether they are a small child with intractable epilepsy, or an adult with cancer, a veteran with PTSD, or a middle aged man with chronic, and debilitating pain, a wife stricken with neuropathy due to DIabetes. Every man, woman, and child residing in the Commonwealth is meant to have the same rights, meant to have the opportunity to enjoy and defend their life, destined to pursue happiness.

So I must ask. Why on earth are we allowing our elected leaders to determine which of the people that elected them get access to compassionate use, and which don’t? Just let that sink in...

After it sinks in, you may feel the urge to channel your frustration into something meaningful. I assure you, it is not too late to get involved. If my loved one, or myself were being deliberately excluded from a life saving program, wild horses couldn’t drag me away from the fight to change the outcome.

Please go to to find your legislator. Call them, write them, visit them. Urge your elected officials to help them all!

Cannabis transformed and saved her if only it were legal

In 1990, Rita had surgery to repair three discs in her back. She then spent almost three years in a wheelchair doing rehabilitation. Steroids were shot into her spine, but it leaked and steroid medication settled on the base of her brain, causing a headache for a month until a blood patch could be performed. This involved combining her blood with chemicals and inserting them into her spine to seal the leak. The steroids caused her to balloon from 98 to 140 pounds within four days.

She needed Lasix to counteract swelling because her lungs were filling up. She's had lung problems ever since; including COPD, emphysema with chronic bronchitis, asthma and a sensitivity to mold and chemicals. The pain meds she was placed on, like Soma, Tylenol with codeine and others, are very addictive and of great concern. She also has persistent cysts in her colon and suffers from IBS.

Rita started having more frequent daytime seizures in mid 2000. One day while working on her deck she had a seizure and fell 13 feet, crushing her left arm. Her fingers were at her elbow. She re-injured her back and neck as well as receiving a concussion. Her arm was surgically repaired but her fingers stayed clutched in a fist. Around 2003 she was diagnosed with obstructive sleep apnea with nocturnal seizures. The sleep specialist immediately sent her to a neurologist who ordered testing which came back positive for brain plaque on both sides of the brain, and a diagnosis of multiple sclerosis.

In 2011, while cleaning her property from damage caused by hurricane Lee, Rita tried to pull the well pump out of the well and felt very dizzy. She went inside and the next thing she knew she was in a dark place with some kind of screens with writing on them and whirling sounds. Her feet were hooked to the ceiling and she was hanging almost upside down. Someone was telling her to swallow because they were trying to incubate her. It was so dark and noisy, she didn't know what was happening. Rita was in a helicopter on her way to the hospital. She was in respiratory arrest. When she got home from the hospital she was unable to completely care for herself so she relocated.

Having heard of the healing properties and potential of cannabis therapy, Rita wanted to try it for her health issues. Unfortunately, her husband, who was in the medical profession, worried about his reputation and did not want her to use that type of treatment at their home. She moved to their secluded summer home to begin treatment.

Her first dose of cannabis oil allowed her to sleep so soundly that for the first time she actually felt rested in the morning. She slept for 7.5 hours, which was unheard of for her. People who spoke to her after that first dose didn't recognize her and thought someone was playing a joke, because for the longest time her voice was gravelly and breathless.

She no longer woke up hypoxic, which reduced her risk of cancer immensely. Her hand started to relax out of it's grip and she was finally able to start working with it. Her congestion was lessening and she was able to expectorate without getting sick to her stomach or have her hernia pop out. Her color was coming back and her skin was showing signs of hydration. Her headaches lessened and her thoughts became clear. She felt less sluggish and gained an appetite and some weight.

Cannabis has transformed and saved her life. Now if only it was legal.

~Author Credit: Erica McBride (Edited/Condensed)

Monday, April 20, 2015

Faces Worth Fighting For

Do you think the need for compassionate use is isolated? That it doesn't touch your county? Please take a minute to meet the faces across the state fighting for the right to treat their disease.

Click HERE to view on YouTube

Friday, April 17, 2015

My Heart Sank When I Saw Her...

Yesterday I took part in a very guilty pleasure. For a busy mom of 3, one of whom has special needs, a pedicure is something truly wonderful, as it only happens about once a year. I was only slightly embarrassed that the young lady assigned to me had to call over the manager to assist her in filing down one of my big toe nails. She had some sort of apparatus hooked to a battery pack that powered the metal chisel.

Now, I know what you’re thinking, this post is not going where you thought it would. I’ll get to the point...I promise.

As I sat in the massage chair, enjoying the rare peace and quiet, accompanied by a foot rub, to my right, down the aisle of nail stations, I spotted a young mother getting a manicure. But she wasn’t just any mom. My heart sank when I spotted her. She was sporting a beige baseball cap, in an effort to cover her bald head. He scapula sharply protruded from the back of her pink sweatshirt. Her vertebrae could have been mistaken for a string of large beads, hanging down the center of her back. And her complexion was telling of the horrors she had recently endured.

To her left was an adorable little boy, about 6, playing on his iPad. To her right, in a stroller, was a baby boy, rattling a toy and babbling. He must have been no more than 1 year old. It was as if these 2 boys had a supernatural connection to her, the way they sat so contentedly and played while they waited for her nails to be done. It was like they knew that their mommy really needed this.

My eyes began to well up with tears, and of course, I quickly wiped them away before they rolled down my cheeks, embarrassed to be so emotional at the sight of this woman. But I simply couldn’t shake the fear that those little boys may lose their mother.

For mothers to die young, of course, we feel sick that they can’t grow old watching their children mature into the amazing human beings they dreamt they would become. But on a much deeper level, we grieve for a child whose mother has passed, because the child their mother dreamed they’d become dies with her. They are forever changed, forever grieving for the gentle woman who lovingly carried them in the womb, cradled them at birth, nursed them to sleep at night.

I’ve heard many members of the Pennsylvania General Assembly state that they will support medical Cannabis legislation to help the sick kids. Being a mother of one of those sick kids, I thank them for that, truly, I do. But stopping short of helping a child whose parent may die without your help is cruel. Facilitating a better quality of life should always be a priority, whether for a child, or for those who care deeply for that child, no matter the age. Putting limits on the extension of your compassion is not compassion. It is prejudice.

I will never in my lifetime understand why any man or woman, outside of the medical community, feels that it is their duty to take it upon themselves to designate a list of patients who can receive a specific medical treatment, much less tell them HOW they can administer that treatment. I find myself wondering how they sleep at night... Or is it just those of us fighting the government who lie awake tormented by their apathy

~Lolly Bentch