Tuesday, May 27, 2014

Anna...A Little Girl...Interrupted


 
Life for Anna…

Over the course of the past 2 years, 6-year-old Anna has been to three hospitals (John Hopkins, Hershey Medical Center and Pittsburgh Children’s Hospital). She is also under the care of a pediatric neurologist and a psychiatrist who have prescribed over 10 different medications in an attempt to lessen her seizures and anxiety. She has suffered through two diet regimes: Modified Adkins and Ketogenic diet and is currently facing the prospect of further testing and the possibility of having her frontal lobe and left temporal lobe removed (1/4 of her brain).


Anna has been diagnosed with Pervasive Developmental Disorder, Epilepsy, anxiety disorder and a form of mild mental retardation. Because her brain never stops producing electrical current, it impossible for her to learn simple concepts like the alphabet Anna must be heavily medicated in order to fall asleep because so many of her seizures occur during the night. She has over 150 seizures a day.


A Glimpse into Anna’s Life
We have always believed that God would heal Anna. We still do. At first we thought He would heal her through man-made medicine. Then we thought maybe He would heal her through the hands of a surgeon. Now we believe He will heal her through the seed-bearing plants He has provided us. Pediatric Cannibis. Will you help give us HOPE for ANNA?

Little Girl, Interrupted by Latrisha Bentch

Someday I’ll be done asking how this happened. Someday I’ll be done asking, “why Anna?” Someday I’ll finally warm up to the idea that bad things happen to good people. Not today though. Today I’m just pissed off. I’m pissed off that there is absolutely no explanation as to why my daughter’s left temporal lobe has atrophied… why does she have cavernomas in her brain? Why is she autistic? I just want to know why my perfectly perfect little girl forgot everything she knew as a toddler.

Anna was the funniest little girl I’d ever met. I know everyone thinks their kid is the funniest kid they’ve ever met but I’m telling you, this kid was a comic genius. She was really bright. One day she brought me a photo album and said, “Hey mom, I got a facebook”. So sweet, so imaginative, so ridiculously cute I could have just watched her all day. But then on the day of her second birthday, something took that delightful little girl away from me. In exchange, I got an angry, sad little 2-year-old, still cute, but damn miserable.

Even more devastating than the fact that her emotions were completely out of control was the fact that she couldn’t remember some of her favorite songs. She no longer seemed to be comfortable with family members. It was sort of like she didn’t know them anymore. She stopped counting. She stopped saying her abc’s. She forgot who she was. She was interrupted.

In place of her usual hobbies, she became obsessed with puzzles. She was suddenly fiercely independent and would spend hours assembling the pieces, taking them apart, and reassembling. She would insist on only wearing pajamas with buttons. She would throw a massive temper tantrum if she got so much as a drop of water on her clothing. As if the tantrum weren’t irritating enough, she’d then strip naked and insist on different clothes. She no longer went to sleep at night. She’d stay up until 3 or 4 crying, screaming really. Some nights the only thing that would calm her was to give her a comb and lie down with her so she could run it through my hair over, and over, and over.

Somewhere after that, I began to notice strange “muscle spasms”. At least that’s what I thought they were. When I’d mention them to doctors and family members, no one seemed terribly concerned. She was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified. Along with PDD-NOS, she was also diagnosed with anxiety disorder. Anna didn’t really talk much anymore so it wasn’t until she began being vocal again that I noticed these spasms were interfering with her thought process. Something more was going on. She’d come into the room where I was and say, “Mommy, I need you to…” (head goes down, arms go up, a small stumble backwards, head back up, arms go down, a smile in my direction). Then she’d walk away. I’d say, “need me to what, Anna? Anna, what do you need?” nothing. She didn’t remember.

She was interrupted. I still didn’t realize she was having seizures. I thought when someone had a seizure, they would drop to the floor and convulse violently for a few minutes. When her psychiatrist caught one of these episodes out of the corner of his eye, he knew immediately what was happening. He set up an appointment for her at Hershey Medical Center. We were there the next day. She had an MRI and EEG, which showed atrophy, cavernomas, and seizures with a slow spike wave in between.

Since then, Anna has had more EEG’s, more MRI’s, 2nd opinions, 3rd opinions, 4th opinions. She’s been on 6 anticonvulsants, 2 extreme epilepsy diets, and several other prescription drugs that are intended to lessen her anxiety and help her fall asleep. Since stopping the Ketogenic diet 4 months ago, she has gained 9lb’s. If you don’t know what 9 lb’s looks like on a 5 year old, imagine a very small person with breasts and cellulite who wears size 8 pants that have to be rolled at the bottom to make them about 10 inches shorter. This is what happens when you put small people on metabolism-altering diets. I suppose I wouldn’t be so irritated about the effects of this had the diet helped even a little. But hey, these are the treatments that we have to pick from in Pennsylvania. Tough break, Anna, you were born in the wrong state.

Or maybe, just maybe, she was born in just the right place. And God allowed her to become sick knowing that I’m a strong enough woman to fight this good fight. Just strong enough to continuously be told not to bother trying, but to continue to try anyway. Hmmm… maybe that’s the answer to all my “whys?” Maybe it’s time to take the anger I feel about all the unanswered questions, and redirect it to the unsympathetic people who are denying my little girl the cannabis medicine she needs to continue in life without being interrupted.

Update May, 2014

Since the SB1182 hearing on Jan 28th, I would estimate that my daughter, Anna, 6, has had roughly five thousand, seven hundred, and fifty-five visible seizures. She has had two trips to the emergency room for seizure related injuries. She’s had two appointments with her neurologists to switch from one ineffective anticonvulsant with horrible side effects, to another anticonvulsant with horrible side effects. She’s seen her psychiatrist and her pediatrician, and had blood work done. I, with the input of her team of specialists, have done everything I could to give her the best care allowed by law in the state of Pennsylvania. Unfortunately, it’s just not good enough.

She has had another EEG and other neurology appointments because her doctor has had to have a closer look at all of her seizure types. You see, she started with just one seizure every two weeks. That was two years ago. Fast forward to present day and what you’ll see is a month by month progression in her disorder that shows a 2100% increase in seizure activity. As if that weren’t disturbing enough, her seizure types have changed. They’ve become far more dangerous and violent.

Seeing my precious little girl’s health deteriorate makes my heart hurt. Sadly, what epilepsy does to children is devastating, but what it does to a family unit is almost unbearable. Since the hearing, Anna’s father and I have continued on a roller coaster of emotional turmoil. Our marriage is like this tangible thing...like this cracked vase that I hold tightly to, hoping it won’t shatter. But to be quite honest, each day that goes by where we are subject to watching our child in this state of agony, is another hairline fracture in this make believe vase. I wonder sometimes if these lawmakers ever consider the fact that some families won’t have to move to Colorado to be torn apart.

I consider myself a happy person, a content person. I don’t look for a fight. I don’t look for the next best thing. I live simply. And I feel peace in my heart knowing that God has given me the life I was supposed to have. I can accept my daughter for who she is and move forward accordingly. But what I cannot live with, what I WILL NOT live with, is the fact that there is something that will help my daughter and she can’t have it because of invisible state lines and the barbaric laws that are enforced within them. And suddenly what has become very clear to me, is that anyone who CAN live with that has now carved themselves a place in our opposition.

~Latrisha Bentch

“If you are neutral on situations of injustice, 
you have chosen the side of the oppressor.” ~Desmond Tutu




Wednesday, May 21, 2014

CJ

CJ, before surgery...leading an active, normal life


My name is CJ Thrasher. I live in Greensburg, PA. I am a 51 year old male who was very active, physically fit, and athletic. 

I retired from the Navy after 16 years. I had to retire early from the Navy during a physical exam in 1997 when I was diagnosed with DDD, degenerate disc disease, which made me unfit for further sea duty. During my time as a civilian, I changed my life style, activities and work to maintain my back. 

I started to have more recurring chronic back pain and in 2009 and 2010, I had an epidural block, which lasted over a year. However, the pain returned, which resulted in needing a Lumbar Laminectomy to resolve my pain issues. It was helpful, but after two months, I began having recurrent severe pain from other areas of my back and legs. I needed Vicodin to deal with the severe pain, Robaxin for muscle spasms and Neurotin for nerve pain. I also went through two bilateral epidurals and a nerve block without any success. 

For the physicians to figure what was really going on, I had to undergo a Discogram of four lumbar disc, which showed further degenerative disc disease, bulge/herniation, foraminal narrowing and Facet Disease.

I was told my back issue was inoperable and that I needed to manage my severe pain with strong opium prescription pain medications. I was taking already Vicodin for the pain and they added Opana and Oxycodone. I am waiting to start Lyrica for controlling spinal nerve pain. 

I have been unable to work for 17 months because of the pain, condition of my spine and because of the strong narcotics. I only sleep 2 to 3 hours at night, tossing and turning from the pain. I cannot stand for long periods at a time nor can I sit for long periods. I keep a time record of when I take my meds for fear of forgetting that I already took them resulting in an accidental over dose. My physician even prescribed me a Nasal Naloxone in case of an opioid overdose. 

Life is no longer fun. I have good days and then I have really bad days...more bad days than good. I’m pretty much living in a fog from all the opioids. My biggest fear is opioid addiction and/or over dose. I worry more and more often if I will ever be able to gain my life back, live pain free/drug free, and be able to work and enjoy life again.



Steve P.



I am 31 years old and I live in western Pennsylvania. I was seriously injured at work over a year ago. I'm currently suffering from a large left posterior lateral disc herniation with significant narrowing of the left lateral neural foramina. There is also generalized bulging at the L-5 S-1 level that gives me a very painful protruding feeling in my lower back.

I experience palpable spasms frequently on a daily basis. Because of the initial pain, the back muscles go into spasm as part of the body's effort to immobilize the painful area. Rather than improving matters, this result is more pain. My legs fall asleep at least 2-3 times a day and the sciatic nerve pain down my legs into my feet is some of the worst pain I've ever felt. This type of pain can make it hard to enjoy even the simplest daily activities.

I also have spondylolishesis as a result of my work injury, which is a forward displacement of the vertebra at the L-5 S-1 level that causes instability, making it hard for me to sit, stand, walk or drive for more than 30 minutes at a time, inevitably requiring a rod fusion surgery.

Most people with these types of problems have the option to take pain pills to deal with their pain, I am not one of those people. I honestly cannot handle any type of pill, steroid or pain injection shot... I've tried, they make me extremely sick to my stomach and come with some very harmful side-effects that make my conditions worse.


I have found mild relief with an FDA approved noninvasive treatment, which is Vertebral Axial Decompression (Vax-D), however access to this treatment is a 2 hour round-trip with 2-4 appointments every week. This treatment costs well over $300.00 day + the 2 hours of drive time just to manage my pain levels on a daily basis.

I was told by 4 neurosurgeons over the last year that I should have a rod fusion surgery performed that could possibly help my leg pain. Rod fusion surgery has a very low success rate and is accompanied by 6 months bed rest, plus another 6 months of physical therapy and plenty of pills involved, which I honestly cannot take. I really don't know how I would manage my pain if I couldn't drive to my Vax-D appointments. I have continued Vax-D to hopefully manage the pain levels enough to delay the rod fusion surgery as long as possible.

In other states people that have the same issues are legally managing their pain simply by smoking, vaporizing and/or juicing raw cannabis right in their own homes. I would be more apt to try the juicing part of this medicine. Juicing the raw cannabis plant for THC-A is also non-psychoactive similar to the CBD oils that are being produced for children to stop their uncontrollable seizures.

Juicing cannabis would have to be made from fresh organic plant material and any medical cannabis bill that is passed would have to allow that type of access via compassionate caregivers and/or personal gardens. That is one of the many reasons I support Senate Bill 1182 rather than accept the proposed CBD-only legislation bill that has been suggested by Gov. Tom Corbett.

I am waiting for medicinal cannabis to be an option in Pennsylvania so it can help me with the pain during and after my future back surgery, but more importantly, this medicine could help other life threatening conditions.

My father, who served 22 years in the army and was a Lt. Col in Vietnam is dealing with PTSD, high blood pressure, diabetes and eye/nose cancer from the night vision goggles they used in the war.

My mother is also battling cancer.

My sister has RSD-reflux sympathetic dystrophy, my brother is a severe diabetic, my little cousin has uncontrollable seizures... and the list goes on.

If cannabis can help every one of these conditions, why am I watching my loved ones needlessly suffer?


Please support SB 1182... for a better quality of life for ALL!



~Steve Placek


Thursday, May 15, 2014

Prayers, Heartache and Hospitals

There are days we might be a pain...too many facebook posts, too many phone calls, too many letters and emails. We are advocating, educating, begging for the right person to listen, but behind the scenes we are praying, crying and lifting each other up through difficult times the best we can. We have met these faces...many of them too tiny to be facing these difficult situations. We have heard them laugh, seen their loved ones cry, we have become a family. Behind the scenes we are feeling helpless as the waiting continues.... Should we have pushed harder? Could we have made one more phone call? Changed one more mind? The answer to these questions is YES! With a renewed urgency, we will continue to fight on. Today it is with extra passion for these beautiful faces...we pray it will not be too late!









Allie had a thirty minute grand mal seizure on May 6th, requiring her to go to Children's Hospital of Pittsburgh's emergency department. The doctors could not find a source for her fever so they kept her overnight for observation. After she woke from a nap, about ten hours later, she was cuddling with her mother when within a few minutes she spiked a fever and started to seize in her mother's arms before the nurse could get her Tylenol. That seizure was forty-five minutes long and required intubation (a breathing tube). During the intubation Allie vomited and aspirated on it. She is now in ICU with aspiration pneumonia, metapneumavirus, and two other viruses while in a medically induced coma since the seizure. She was in her coma for Mother's Day, which was also her 7 year old sister's birthday. Her sister had her birthday party in the ICU waiting room with a few aunts and uncles, mom, dad, and older sister but couldn't have her little sister there. The two older girls are so worried about their little sister, but they must stay with other family members during the week so they can go go school. Allie has made some small improvements, but honestly if she were to have another seizure while so weak it could be the one that takes her life. There is no estimate of when she will be able to come out of this coma and no idea of the skills and strength that she may lose due to it. ~Amanda




Zoey was admitted to Johns Hopkins Hospital in Baltimore, MD on Monday, May 5th for respiratory issues. Shortly after being admitted, she was rushed to the PICU because she needed to be on high flow oxygen.

Zoe had been battling a bout w/ Pneumonia, and was seeming to get better. She was moved to the regular pediatric floor out of the PICU, until this past Monday when had an uptick in seizure activity. Her typical seizure activity is roughly 1-3 seizures a day, sometimes more. Tuesday she had 8 seizures. Wednesday she had a whopping 56 seizures, occurring anywhere from 5-10 minutes apart at times. Last night Zoey was rushed back to the PICU as they were unable to break the cycle of seizures and she needed to be put on high flow oxygen to assist her breathing due to the side effects of the emergency medications they pumped into her system to break this vicious cycle. We are currently awaiting results from an EEG performed this morning. ~Jody




Hannah was admitted to ICU for status seizures on Wednesday May 7th and discharged on Saturday May 10th. Hannah was gaining her strength back on Sunday and Monday. We were able to enjoy a beautiful Mother's Day together at home. Tuesday morning, May 13th, Hannah awoke pleasant and was ready to get on the bus for school when she slammed into a wall and onto the floor with a seizure. Ten more of these seizures followed within 20 minutes. Emergency medication was given, which gave Hannah temporary relief. Seizures happened throughout that day.  

Tuesday evening Hannah was bathed and was ready to curl up in bed when tonic clonic clusters of seizures began at 9p.m. After 3 doses of emergency medications at home without successful seizure control we had to result to call 911 at 2a.m.  Off to the emergency room again. Hannah arrived at the emergency room just in time as she started seizing as the EMT'S were walking her in. Thirty very violent and strong tonic clonics later, Hannah landed herself back in the ICU. 

I cannot begin to explain the emotions that are running through my head. Watching my precious little girl suffer is heart wrenching and leaves me feeling helpless. But this moment of helplessness only lasts for a few hours when my 'Momma Bear' instincts kick back into action and my mind is taken off of the reality of my daughters situation temporarily and I put on my white coat and play doctor again. 

Hannah continued to seize all throughout the day on Wednesday despite emergency medications in extremely large doses. The only option is to adjust seizure medications that have already failed her.  Discussions with neurologists throughout the day are tiresome and  emotionally draining as at this point it seems we are playing Russian Roulette with my daughter's life.

In between discussions with the doctors, I research the information discussed and consult with the 'real life' experts on this matter and I come up with a plan so that I am ready to let the doctors know what I want Hannah's plan of treatment to be. After researching one of the 2 medications Hannah was introduced to, I discovered it can increase her seizures. This may be the culprit for this ICU stay?!  I suggested the immediate discontinuation of this medication and will discuss my decision with neurology.

I'm tired of researching new seizure medication suggestions...20 seizure medications tried and failed.  Seizure meds with terrible life threatening side effects. I want to scream! Why not treat Hannah with what is proven to help that has no harmful side effects???

So many things to juggle in your mind when you are fighting to save your daughter's life. Throughout the day I have a feeling that my little girl is slipping away from me. I'm an emotional disaster on the inside in fear that I never know which seizure is going to take her from me.  ~Heather




It was so sad yet so comforting at the same time to walk down the halls of ICU at Children's Hospital with Heather; so many nurses and doctors knew Heather and Hannah. When I saw Hannah, I was surprised that she only had an IV and the EEG cords. She had great color and just looked like she was sleeping.  When she started to have seizures, I was shocked that her whole body reacted and that each seizure lasted so long. Although Heather and the nurses were able to count the seizures,  it appeared to me as though it was one 20 minute long event.  I realized at one point that I was holding my breathe just silently praying for them to be over.  When that last series of seizures ended it was time for Hannah to get doses of medicine. To ensure that she swallowed all of the medicine, a type of NG tube was needed. Heather stepped out of the room, so I held Hannah's hand. She had been producing phlegm, but wasn't able to swallow or get it to her mouth to be suctioned. As the tube passed her upper throat, Hannah started to choke on the phlegm. The nurses and I expected the choking to pass. As Hannah's oxygen level dropped, her lips started to turn blue and the rising tension was palpable. Finally with the tube out and Hannah breathing normally, I realized that every moment we get to spend with her is a blessing. Although Hannah recovered from that round of seizures and difficulty breathing, we need to remember to hold her hand, tell her we love her and not take any single moment with her for granted. As I left the hospital, I took a long measured breathe and said a prayer for the children and families who live this life everyday. ~Michelle, cousin





Our hearts and prayers are with each of these families
as they continue to fight from hospitals instead of their homes.



Jessie T. - PTSD and Integrity


My name is Jessie and for the last 9 years I have struggled with the effects of Post-traumatic Stress Disorder. For the first 6 years I was embarrassed to admit to the world, including my family, I was suffering. As a veteran it was hard for me to admit that I needed help. I looked at PTSD as a weakness. I was always told to suck it up and drive on. Things were not supposed to bother me.

The treatment options I’ve tried for PTSD are actually more geared towards depression and anxiety.  I’ve tried a lot of different combinations of medications and what I’ve realized is that no one medication works for too long. As soon as I think a medication is working well, I realize more breakthrough symptoms are presenting. This means that I either need a dosage change or even a medication change completely. One thing I always worried about is a medication that is going to make me emotionally numb.

For the first 6 years of my suffering I was completely numb emotionally. I didn’t feel a sense of pride in my children or my family. I never want to experience that again. Therefore, I am very involved in the decision making of my treatment options. My husband and I cringe every time that I feel a change in medication might be needed. We have had so many struggles when these changes occur.  Last summer when I had a medication alteration, it resulted in a severe reaction from me. I felt it was necessary to abandon my family and run away.  I ended up homeless for 7 weeks where I was living out of my van. Luckily my husband, best friend and the rest of my family stuck by me and helped me get back on track.

I also do not like the use of highly addictive medications such as benzodiazepines. I’ve seen first hand the losses associated with such addictions. I do have a rescue medication that I carry with me all day, every day. His name is Ensign and he is a 5 year old black lab. He is a certified PTSD service dog and he has been my lifeline while in public. When the suggestion of a service dog first was brought to my attention I refused.  I was not a dog person. I didn’t want a dog and I don’t think I truly believed in the abilities associated with a service dog. Boy was I wrong. Ensign is the best treatment option I’ve tried so far, however I do still have the need for a daily medication regiment.

I have never tried marijuana, and I cannot try it as long as it is illegal in Pennsylvania. I cannot break the law. I have too much integrity in myself and I also need to be able to set an example for my children and others in the community. I would love to have the option for this treatment. I have seen the relief that other veterans have experienced with the usage of MMJ. This is an option that all veterans deserve. Our service should not be in vein. We should be able to experience the best possible treatment options that we have earned with our sacrifice.


Tim


I support medical cannabis for many reasons. The main reason is religious sacrament. I'm a firm believer in the Lord. Spirituality and meditation through prayer can be an amazing stress reliever while helping to build a stronger relationship with God. Stress happens to be one of the top killers in America, so that's why I believe that religious sacrament is a form of medical use. A freedom issue as well but that's another story.

When I was a young teen I started to go through a severe depression. I would wake up sad that I made it through the night. Doctors put me on Zanex, Lexapro and Effxor. 2 made me suicidal and the other made me a zombie. I quit all of those harmful drugs by self medicating illegally with cannabis. I didn't even know smoking was medicating back then. All I knew that it was the ONLY thing that made me feel better.Thank God I did or I may not be here now. I've been on Buspurone for anxiety recently. That was some real bad stuff. I can't believe that one is even legal. It's highly addictive and comes with mood swings. Now I can not self medicate due to my job. But I'm not taking the pills anymore either. My depression has been getting better but anxiety is getting a lot worse. I believe, and know, that MMJ would help to level me out and feel somewhat normal again.

Lastly, I believe that veterinarians should be able to prescribe Cannabis as well. I have a 6 year old dog, Oddball, that has been suffering from seizures For half of his life. It's terrifying! I hope that our furry family will get the help and access that they need too.

In my opinion, It's a sin to watch people suffer, refuse to help, and then prosecute them for trying to heal themselves. We should not have to ask, beg or plead to be granted safe access to God's healing medicine that He ALREADY gave us.

Cannabis is already helping so many people all over America. But it needs to help a lot more. We all need safe access to this safe, natural medicine. Please support SB1182.

      
                        God Bless,
                        
           Tim Moose


Bob


I am 24 years old and have been through a lot that has caused me to have PTSD. I was bitten by a dog which required surgery and a skin graph. I had to learn how to walk again as well. My back problems required three surgeries in the past year and a half. This makes it difficult to find appropriate medications that help with my pain and my PTSD. I've tried a lot of medications that the doctors recommended and nothing seems to help me for my PTSD and anxiety.

I believe medical cannabis can help with my pain, PTSD, and anxiety. I'd much rather use one medication, medical cannabis, than several pharmaceuticals, all of which have unpleasant side effects. I just want to be able to live a normal life again instead of being in so much pain that I just want to cry and not go anywhere. Right now I can't enjoy my life, get a job, find a girl, start a family, have grandkids and grow old. My current medications will not allow me to live the life I want, and sadly I'll end up wasting my life like my dad. I want to become someone in my life and make a difference for people like me who have been suffering for years and in need of something safer to treat their bodies. For many of us, a large amount of pills which cause more problems are our only option. We'd much rather use one plant to treat all of our health issues.

Please think about people like me who are suffering and just want to be able to live life and not have to worry about being in pain or to scared to leave the house. Please, we are people too and we are just as important as everyone else in the world.

Louis - A Good Father and a Good Man


Passing SB1182 is of high priority for me because of my father, Louis Rosenzweig. My father
worked as an employee of the US Post Office for 16 years before his condition forced him into
medical leave. While I was growing up, he taught me many things about life; being a man, taking
responsibility, how to drive, how to play baseball, to study hard, how to be a leader, among
countless others. He was a good father and is a good man.

After numerous misdiagnoses, in 2003, my father was diagnosed with Reflex Sympathetic
Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). RSD is a chronic
neurological/neuropathic syndrome characterized by severe burning pain, burning sensations,
pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity
to touch.

This leaves him in almost endless and random pain. One minute he'll be sitting on the couch watching TV, the next he'll have agonizing back/neck pain because he slightly moved his head. Stubbing a toe, something which you or I would get over after a minute or so, would be painful to him for the rest of the day, if not the next. Sunlight, light touch, and excess vibration can cause pain. It's a rare condition that can follow 5% of all nerve injuries, and can be caused by even minor injuries such as a sprain or a fall.

Things like going out to come visit me at my home, going to the theater to see a movie, going to family functions/holiday dinners, going to the ballpark to watch a game, etc. have been out
of the question since 2004. Going for a car ride can cause him to be in pain for days. He was barely
able to make it halfway through my sister's wedding reception this past November, luckily he made it through the ceremony. He has one of the worst cases of RSD known to his doctors.

My father was treated with various forms of medications and therapies. At many points during his treatment, it was impossible for him to hold a conversation with me or my family without these horrible pharmaceuticals affecting his memory, speech, and ability to stay awake. It should be noted that the effects of marijuana are much better tolerated than any of the medications he every took.

 I was able to convince him to try vaporizing some cannabis a few times a couple of years
ago after the medical marijuana bill in the PA House died in committee, and it did help him without
causing any problems. Given its current illegal status, my dad is reluctant to use it on any kind of
regular basis. He rightly doesn't want to risk jail time, nor the jail time that someone helping him
obtain cannabis would face, if caught. His pain management physician is required to drug test him,
and as you well know, cannabinoid metabolites can persist in the human system for up to 30 days
after use. His pain management physician would be required to cease my father's pain medication
if he tested positive for marijuana. My dad could gain a palliative benefit and higher quality of life
by using marijuana as a regular part of his medical regimen. A study entitled "Effects of Vaporized
Marijuana on Neuropathic Pain" attempted to determine if participants would report a 30% or greater reduction in pain intensity, and concluded: "Ten of the 38 subjects (26%) who were exposed to placebo had a 30% reduction in pain intensity as compared to 21 of the 37 exposed to the low dose (57%) and 22 of the 36 receiving the medium dose (61%) of cannabis."

A "low dose" in this context is 1.29% THC by weight; "medium/mild dose" is 3.53% THC. Higher
doses were not tested. This study tested the conditions Neuropathic Pain, Reflex Sympathetic
Dystrophy, Peripheral Neuropathy, Post-herpetic Neuralgia, Spinal Cord Injury, and Multiple
Sclerosis. Besides the clinical research, which concluded that: "Psychoactive effects were minimal and well tolerated, and neuropsychological effects were of limited duration and readily reversible within 1 to 2 hours. Vaporized cannabis, even at low doses, may present an effective option for patients with treatment-resistant neuropathic pain."

Numerous anecdotal reports have shown RSD and chronic pain patients to do better with medical
cannabis than without it. A 30% reduction in pain intensity might enable my father to reduce the
use of some of his other narcotic medications, thus helping avoid some of the more unsavory side
effects of said medications.

 My father deserves the best possible treatment for his condition, and passing SB1182 would
give his doctors the freedom to provide written certification for medical marijuana. He could then
use it without fear of going to jail or losing his pain management physician. There is no possible
moral, ethical, or legal justification for denying him, or others like him, the medical
benefits of marijuana.

In addition to my father, my Grandmother would benefit from medical cannabis for her rheumatoid arthritis; my cousin Kellen, at only 2 years old, who had to undergo numerous chemotherapy treatments for liver cancer, could have had to endure less - or no - chemotherapy if cannabis oil were available to his physicians and hospital staff as a medical tool. A series of cannabis oil injections into the tumor site on his liver could have shrunk the tumor without causing damage to the liver, which unfortunately the chemotherapy did. His treatment regimen caused him hearing loss. Thankfully, he is in complete remission and is doing very well now. Many others are not so lucky. Chemotherapy can be very damaging to healthy cells and tissue, whereas cannabis oil is known to only kill cancer cells and leave normal tissue alone.

~Derek


Karen M



I am 55-year old adult with several medical conditions, including progressing fibromyalgia, osteoarthritis and bursitis, that continue to progress with debilitating chronic pain that exacerbates a decades-long bout of clinical depression.

I have been on permanent disability for a few years. Some of the FDA approved chemical prescription medications I should be taking are contraindicated with other meds and still others have such horrible toxic side effects that I won't even fill the prescriptions, let alone attempt to take them.

My husband also suffers from degenerative disc disease and rheumatoid arthritis in his back and is in constant pain. He also has restless leg syndrome as a result of the back issues. And again, the medications he has to take have terrible side effects if taken long term. So, he's actually putting his health at risk by taking FDA approved, man-made toxic chemicals to help with the pain.

My 33-year old son, from Chester County, was diagnosed with idiopathic temporal and focal seizures. He did not outgrow this and now, after so many years on the only FDA approved TOXIC seizure medicine he can take, he's at risk of a type of blood cancer.

He has four children and is being forced to take TOXIC POISON in attempt to control his seizures. Since these poisons are no longer doing their job and he's unable to take anything else, he's now on medical leave with his job as a class III welder.

I used to be dead-set against the use of marijuana for anything. But in doing more research and becoming better informed, I now realize that the cannabis plant is much more beneficial in treating not only seizure disorders, but many other conditions without the toxic and literally life-threatening side effects of toxic chemicals.

I believe this state needs to listen to its constituents – the 85% of residents who are in favor of legalizing cannabis for medical use.

Beyond that, I'm also in favor of the full legalization of cannabis and/or decriminalizing the possession and use of the plant for the benefit anyone who may not be able to find a medical doctor to "prescribe" it based on their outdated and uninformed beliefs of this plant.

Karen S Musselman


Leah and Olivia


Leah and Olivia McGurk both suffer from Dravet Syndrome, a catastrophic form of epilepsy. 

Leah was born January 2002, healthy as can be. Her first year of life was completely normal. Leah’s first seizure began the week of her first birthday, On a cold Sunday night around 9pm, while traveling on the PA turnpike returning home from New Jersey, I turned around to look back at all of my children when I saw one of the most horrific sites I could imagine. There was my baby girl, tremoring from head to toe, hands in fists, foaming at the mouth, skin tone a pale blue color and her big beautiful eyes were rolled back into her head. We made our first of many 911 calls, and local state troopers responded and escorted us to Ephrata Community Hospital. This was only the beginning for this little girl, as months went on, she would be prescribed dozens of different anti-convulsive pharmaceuticals, most of which left her unable to hold her head up, walk, or talk. She was heavily medicated over the course of the next few years in hopes of gaining some seizure control. She was life flighted over a dozen times, we made hundreds of ambulance and 911 calls, and spent over 500 days in the hospital.

March 2006, Leah took a turn for the worse when she began seizing, which continued into non-convulsive status seizure. After trying experimental medications over the course of a few days we were told Leah would more than likely not survive. Leah remained in a coma for over 45 days in the PICU. Her hospitalization was over five months, which was followed by rehabilitation for therapies. Currently Leah has had surgery three times for her Vagal Nerve Stimulator. We have tried all medications available to us in the U.S. and Canada. She has remained on a minimum of no less than five anti-convulsive medications at a time, she is severely developmentally delayed, nonverbal, and is completely dependent for her daily care.

Leah’s younger sister, Olivia, was born January 2005, again healthy as can be. Olivia is the youngest of my four beautiful children. The odds of having 2 children with Dravet are very slim. We are one of 7 families in the world, that I know of, to have two children with this rare regressive syndrome. Olivia’s first seizure happened at the bank when she was only 6 months old. Once again, I had to witness another one of my babies blue in face, eyes rolled back, foaming at the mouth. 911 was immediately called and she was transported to a local hospital, where she was immediately air lifted to a children’s hospital as they could not get her seizure to stop. Over the course of the next year we spent more time in the hospital with Leah and Olivia than at home. Our life was a roller coaster.

On January 22, 2007 (only months after Leah awoke from her coma) Olivia had a seizure lasting over 6 hours, and causing permanent brain damage. She remained in The PICU for months on life support and failed estuation and medications several times. She continues to have brain damage and swelling on the left side of her brain.

Over the last few years, my girls have tried all prescribed medications available, have been life flighted, hospitalized, undergone surgeries, testing, and therapies of all sorts, all in hopes of gaining control of their seizures and regaining abilities lost due to side effects of medications.

Jason H.

Jason
This is Jason. He was born happy and healthy. He began seizing after he turned 2. Mildly at first, then by age 3, he was seizing up to 60 times a day! He lost his ability to walk and his speech became unintelligible. He would try to take a couple steps and suddenly lose all his muscle tone and fall flat on his face! This is called an atonic or drop seizure. He was diagnosed with Lennox-Gastaut syndrome. He had to wear a helmet for protection for 6 years! No more running and climbing up into his tree fort.
8 medications have not worked to control his multiple different types of seizures. The Ketogenic diet has helped decrease his seizures by half. The strict high fat, low carb diet has not allowed him to enjoy birthday cake or ice cream at his cousins birthday parties. Jason is now 13 yrs old and is unable to enjoy pizza or fast food like his peers do! He is unable to participate in scholastic sports like his 2 other siblings.
Jason_smAlthough Jason’s body is growing, his mind is not. He has autism and has raging behaviors at times. He can not make any progress in school due to his constant daily seizures for 10 years. He barely reads on a 1st grade level and can not add or subtract. He can not perform basic life skills such as bathing himself. Sudden temperature changes cause seizures for him. He has seized in the bath tub and swimming pool multiple times.
The neurologist suggested performing a Corpus Callosotomy. This procedure severs the two halves of the brain. Although we have had to administer rescue breathing at times when he has turned blue, this option was not acceptable. There must be SOMETHING better than this extreme surgery. THERE IS. It’s called medical cannabis.
Jason is on a medication that can cause pancreatitis and liver failure, and is addicted to his benzodiazepine. Medical cannabis is a viable, safer next step for us. For Jason to have a chance at a “normal” life, we need to try this oil that will not cause him to be “high”. Especially since it has been reported that behaviors decrease as well as seizures! Legalize Medical Cannabis so Jason can have the life he deserves!

Andy



Hello my name is Andy. I was in a single engine plane crash back in 2004. I suffered numerous injuries, the worst being splitting the pelvis in half and surrounding soft tissue and organ damage. Then in 2012 I was in a head on car crash. Again major orthopedic traumas, broke both knees, both
femurs, right hip, and every rib at the sternum. I stopped counting surgeries at 100. I suffer from bipolar as a result of brain injury, PTSD, depression, and different forms of chronic pain.

 
I moved to PA back in 2011 from Rhode Island which is a medical Marijuana state. I found through the use of cannabis I was able to drastically reduce the use of opiate pain medications. It also slowed down the frequency of my mood swings from the bipolar. Which reduced the amount of pharmaceuticals I was taking to treat the mood swings. 

Because of PA laws I must go without, and forced to crank
up the amount of pills and the number of side effects. Even with the higher doses of pharmaceuticals I do not get the same relief as I do with cannabis. With the PTSD/bipolar combination I have numerous panic attacks each day. 


Something as simple as a lost key could send me into an attack. I am forced to use Xanax to combat them. Xanax all to often makes me zombie-like. The use of cannabis can control and stop the attacks without the zombie effect on me. If our governor has any compassion he will pass
SB1182.



Friday, May 9, 2014

I Knew A Man



I knew a man, he was a hippie in the 60's, a character taken right out of "Easy Rider", riding his Honda from Philly to Wyoming and back in a few days. I knew a man who started working at the Steel Mill at age 18 and continued working there until they shutdown. I knew a man who re-sided and re-shingled his entire house by himself in a weekend. I knew a man who was an avid RC airplane/helicopter pilot. I knew a man who watched his wife battle breast cancer and lose. I knew a man who would spend his days on his boat with his dog fishing.

I know a man who lost over 50 pounds after one bout of Chemo. I know a man who can't control his movements. I know a man who can't hook his boat trailer up. I know a man who can't cast a fishing rod. I know a man who can barely stand up straight. I know a man who can't eat more than 2 bites at dinner. I know a man who has to go to the hospital to get fluids through IV to live. I know a man who lost his will to live and is pissed at the world. I know a man who is suffering from Stage 3 non-small cell squamous lung cancer, and I can't give him the care he needs to live a better life.

This man is my father-in-law and has to live with my family because he can no longer care for himself.

I know that if I could introduce some Medical Cannabis into his diet, things would not change overnight, but I know that it would improve his quality of life.

This isn’t his just his story, this is everyone’s story. It is everyone’s right to be able to receive the best possible medicine for their ailments.

~Ryan Yeager, Bucks County





Wednesday, May 7, 2014

Rose - Someone's Little Girl



Hello, my name is Rose. I am a lifelong resident of PA and a registered Republican in Dauphin Co. I am a mother of 2, a grandmother of 3, as well as a wife, a sister, and I am someone’s daughter. But most importantly right now, I am a victim of a cruel and unjust law that states that I can’t use medical marijuana to alleviate my needless suffering. 

About a year and a half ago, I was diagnosed with a klatskin tumor in my liver. I had three-quarters of my liver removed at Johns Hopkins shortly thereafter. I’ve undergone radiation, chemotherapy, and countless other procedures since my surgery. I’ve lost roughly 100 lbs. Hershey Medical Center has become my second home. I can’t help but think if I were able to use Cannabis, therapeutically, that I would be feeling better right now. 

You can imagine how disturbed I was to research and find out that our government knew in the ’70’s that THC kills cancer cells. Imagine the terror I feel knowing that we have a cure for cancer that no one can legally use! I don’t know what sickens me more, my ailments, or the fact that we are ruled by lawmakers that allow this injustice.

Currently, I am on a liquid diet as I await another procedure which will offer a solution to the digestive issues I now face. I am on Morphine and can no longer drive to visit my grandkids. I am lonely, I am hungry, I am nauseous, and I am in pain and I long for a day when Pennsylvania’s legislators empathize with people like me. 

I may not be a child... But I am someone’s little girl. Please don’t leave me behind.

Saturday, May 3, 2014

Response to Governor Corbett's Announcement


May 3, 2014

We would like to thank Governor Corbett for his thoughtful regard concerning children with severe seizure disorders. By proposing a research program on cannabis extract oil for treatment of Epilepsy, he has made a very important step in the right direction! Although we feel a research program is important to understand new ways that medical cannabis can treat disease and chronic pain, a fully functional medical cannabis program must be implemented immediately to treat the myriad of conditions known to respond positively to medical cannabis recommended by physicians in other states. We believe a program must be developed to be as inclusive as possible, while still addressing the governor's concerns. If medical cannabis is a medicine to alleviate suffering for some patients, it must be available for all who can benefit.

While we appreciate the kindness extended to a small number of our families, the vast majority of our advocates suffer from a myriad of diseases and conditions that we implore the Governor to include in his proposed research program. Despite the significant, but small step taken on May 1, we are united in our belief that, at this time, our demands have not been met. We have families who still await a meeting with Governor Corbett and his administration and we would like to ensure that both of our champions, Senator Folmer and Senator Leach, are not excluded from those meetings. We have assurances from both of their offices that politics must be cast aside. Eighty-five percent of Pennsylvanians were found to favor the legalization of Medical Marijuana, not a Cannabis oil research program. We have no doubt that the General Assembly will continue to represent the 85%.

Make no mistake, as advocates, we feel we have succeeded in the battle to gain Governor Corbett's attention, but our fight will go on until we are clear that a medical cannabis program in PA will help everyone who can benefit from it, not just the narrow few who will be helped by Governor Corbett's proposal. Without a comprehensive medical cannabis program in PA, those with cancer, chronic pain, Crohn's Disease, arthritis, glaucoma, multiple sclerosis, chronic migraine, lupus, dementia, diabetes and veterans suffering with PTSD, not to mention adults with Epilepsy, will remain under treated. We look forward to working diligently with the Governor and Pennsylvania State Legislature in the near future to pass a substantial bill so that all Pennsylvanians may have access to treatment as recommended by their treating physician.

Sincerely,

The Administration for PA Advocates for Medical Marijuana
And Campaign for Compassion

Thursday, May 1, 2014

Cameron



This is my beautiful Cameron. He is almost 6, but functions like an infant. He was not always like this. Cameron has severe Epilepsy with an undiagnosed mitochondrial disease. He used to be a strong, healthy and happy baby boy. His first seizure was right before his first birthday, and he started having hundreds daily at around 15 months old. Doctors have done extensive testing and have tried almost all available treatment options on Cameron. He has seen some of the best doctors in the country and has been to many of the best hospitals including The Cleveland Clinic, Johns Hopkins, Children’s Hospital of Pittsburgh and even The National Institutes of Health. He has a Vagal Nerve Stimulator (VNS) implant and is currently on 4 anti-seizure medications. These reduce his seizures to between 50 and 100 each day. His quality of life has decreased drastically. He can no longer do anything on his own. However, I am his mother and I KNOW he is still in there. He is trapped in this epileptic body. We are currently in the process of moving to Colorado to get him treatment from MMJ, specifically Charlotte’s Web. I, along with many other families, think it is absolutely sickening that we have to leave our family and everything we have ever known to get this for him. But, like any parent, I will go to the ends of the earth for my sweet boy.

Update March, 2013

Well, to be quite honest we have been doing what we're doing since before the hearing.  I would have loved to be at the hearing, but my son is now a prisoner of the state of Colorado, aka a "marijuana refugee".  Cameron and I moved here in January leaving behind my husband and the rest of our families, my home which is now up for sale, Cameron's well established support and medical system of doctors, specialists and therapists, and the town in Pennsylvania that I have called home my entire life.  We couldn't wait around for the laws to change since Cameron was having at least 150 seizures each day, not to mention the subclinical ones that we can't see. 

So...since January 10th, 2014 we have been giving Cameron a very low dose of Charlotte's Web.  We are gradually increasing it while we very slowly wean him off one of his four pharmaceuticals meds that has failed him.  I have watched his poor little body go through withdraw before this, but luckily the CW seems to lessen those effects a little.  We have had some wonderful positive gains, while we don't have enough seizure control yet. 


Cameron is making so much more eye contact.  My husband and I noticed this almost immediately.  He got to witness a few of the changes during the first week we were here while he came out to help get us set up.  (He is back in PA working to keep us afloat while paying a mortgage and bills at home and renting and paying bills out here in CO.)  Cameron is not only making more eye contact, but he is making longer eye contact and doing so much quicker.  He is also making sounds again.  These are some of the things we have watched disappear over the years.  Cameron has also had some seizure reduction.  This is the primary goal in all of this, of course, but the other stuff is just proof that he may be able to gain so much more from CW.  His seizures have gone from 150 visible each day to around 60-75.  That is greater than 50% reduction.  That is with LESS of one of his pharmaceutical anti-seizure meds.  And finally, the most important change to me (yes, even more important to me than seizure reduction) has been that my boy is starting to smile again. When you watch your child every minute of every day and never see a smile anymore, it slowly breaks your heart.  The first smile I saw with CW that was definitely a smile and not the fake ones we have seen at the end of a seizure, brought me to tears...happy tears. So, while I sit here in my hopefully temporary home in Colorado, it is bittersweet.  I am so grateful to be able to give Cam this oil that is slowly bringing him back to us, but I am alone. My husband and the rest of our family do not get to share in these little steps that I believe will eventually be bigger victories. I cannot bring Cameron home to visit my medically fragile grandparents. We are missing out on important events for family and friends. I don't have my support system around.  I want to go home every single day, but I will remain strong for Cameron. He deserves this chance.

-Amy Audino Houk

Wait, what? The US has funded medical cannabis research in Israel for 4 decades?

Ever since Sanjay Gupta talked about the research that Israel was doing concerning the medicinal benefits of marijuana, I have been intrigued. During my own research, I came across this video showing how they use medical cannabis in Israel. It was nice to see the many therapeutic uses in and outside of the hospital. 

The reporter also interviewed Dr. Meschoulam for this piece. Dr. Meschoulam is known as the "Godfather" of medicinal marijuana. His research, at the Hebrew University in Jerusalem, has shown great promise for using cannabis for cancer, diabetes, pain and epilepsy. 

Imagine my surprise when he said that a lot of his research has been funded by the American government through grants from the National Institutes of Health! For 40 years they have sent him research money! It doesn't seem fair for us to grant American taxpayer dollars to a cause that Americans are forbidden to use, does it? How can we fund research on the medicinal properties of a plant that our own government continues to say has no medical use? 

Please watch this very informative news story!

~Deena Louise

http://video.cnbc.com/gallery/?video=3000270136