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HelloMD had the pleasure of speaking with Jan Lavelle who was diagnosed with Parkinson’s Disease just over 6 years ago. Jan has chosen to follow a holistic route for her treatment of Parkinson’s, rather than more traditional western pharmaceutical methods. Through a combination of dietary change, exercise, natural supplements, and cannabis, Jan has found relief from her Parkinson’s related symptoms and hopes to slow the progression of the disease. She is also a passionate Wellness Consultant, helping others to learn about the potential benefits of cannabis for Parkinson's and other conditions.
What were your initial symptoms?
I was diagnosed with Parkinson’s when I was 45 years old. My mom, my sister, and I all have genetic Parkinson’s Disease. My mom was diagnosed at age 60. My sister is one year older than I and she was diagnosed at age 44. I had noticed that I was holding my arm funny. My right arm was straight out and not swinging while walking, so I called my sister and asked her if her arm did this funny thing where it just doesn't move. She said, “Oh you’re holding the invisible purse,” and this same stiff arm was one of her first symptoms as well. We then all went to the website 23 and Me (a genetic testing site) and ultimately found we all have the gene Lrrk2. Once we were all identified with the particular gene, we did a bunch of studies through UCSF, Stanford, and Sunnyvale Parkinson’s Institute. Genetic Parkinson’s hasn't become very evident until lately, so we are considered a unique case.
How did Parkinson’s affect your daily life?
I am a pretty healthy person, so I wasn’t sure in the beginning if it would affect me at all. My mother and sister each are having their own individual journey, so I was pretty sure mine would be different as well. My sister started western meds and eventually had two brain surgeries, called deep brain stimulation (DBS). They put a pole in your head and a battery in your chest that allows for the stimulation of the production of dopamine. My sister had that done on both sides. My mother also had that surgery at 78 years old. Deep brain stimulation surgery really works for tremors and the movement symptoms because it stimulates the dopamine production.
Tremors are not my biggest issue though, my issue is really stiffness and rigidity in the way that I walk and drag my leg. I also can’t move my hand very well. I don’t have a resting tremor but when I try to use my hand it tremors. I just do everything with my left hand now because my right hand doesn’t signal to move properly, along with my right leg. In order to even get the deep brain stimulation surgery, you need to be on levodopa/carbidopa to make sure that dopamine actually helps the symptoms. I have opted to not take western drugs for now, but I would also not be opposed if I felt it would improve my quality of life. My neurologist told me, “the drugs do nothing to slow or stop the progression of the disease”. However, they can apparently help with symptoms.
Was cannabis your first choice for treatment?
Cannabis wasn’t my first choice. I didn't know much about it six years ago. I read Grain Brain and learned how grain is bad for your brain function, so I made some dietary changes. I cut wheat out of my diet and I take antioxidants like green tea, blueberries and turmeric to keep my immune system strong. I also exercise every day. I am a trained yoga practitioner and I’m also a trained Ayurveda practitioner. I knew a lot about health, nutrition, and exercise, so I worked to do everything naturally.
I also tried a form of natural dopamine, which is made from mung beans called Mucuna Pruriens. Western pharmaceutical companies traditionally use Sinemet for Parkinson’s. Sinemet is made of Levodopa Carbidopa, which helps your body get the dopamine through the blood brain barrier. Alternative medicine practitioners have developed a protocol with amino acids that gets the dopamine in you, and through the blood brain barrier without making you sick, but unfortunately it made me very sick. I tried it for a year and it did help with my symptoms a bit, but it made me nauseous all of the time so I stopped doing it. That’s when I started taking CBD tinctures. A friend told me about CBD tinctures and how they might help me, and I have been doing so ever since.
When did you first consider medicinal cannabis?
It was through the friend who recommended it. Then I immediately began doing research. We had a family friend of ours who was featured through United Patients Group. You can watch a video of his story, Stan Rutner, who was basically dying of cancer. As a last resort they gave him CBD oil and the results were amazing. My mom had sent me this video, so I called his daughter to talk to her about it. She was the person who got me the first information on what to take and how. I started meeting more and more people that gave me information on medicinal cannabis. The first tincture I used was a CBD tincture by Care by Design.
Do you use CBD and THCA?
Now, I’m actually taking CBDA and THCA, they are both non-psychoactive. I micro dose both throughout the day. I take three doses a day about an hour before each meal. The product I take is made by a company called Alta Botanicals. I am working on a cannabis protocol with Alta Botanicals for Parkinson’s to get the endocannabinoid system stimulated and working again.
How are you trying to help other patients?
Alta Botanicals and I are trying various methods on me to see what works best with Parkinson's. I am working hard to stick to a protocol, which is easy to do because the medicine is so simple to take. We’re are observing what is going on and ultimately, we would love to be able to cure this disease and help other people with this disease. That’s the goal, of course, to help people get better.
How has using cannabis changed your day to day life?
Cannabis gives me some relief from my symptoms. When you have Parkinson’s, you lose your sense of taste and smell, your body kind of freezes up. You don’t have the same senses that you normally would because you lose your dopamine, which can also cause apathy and depression. CBDA and the THCA have actually brought back my sense of taste and smell. My physical senses, like my touch and feel, have also come back.
With Parkinson’s you tend to lose your connection between body and mind because of the lack of dopamine, but now I am much more aware of my body mind connection than I was before. I am still limping quite a bit and I still have trouble with my right hand. It’s hard, it is definitely still hard. I think if I keep building cannabis up in my system it will get better. There are definitely some days when I just want to say screw it and go on western meds and get rid of my symptoms, but the western meds don’t do anything to slow or stop the disease, they just mask the symptoms. With cannabis, we can actually do something to slow the disease because of the connection between Parkinson’s and the endocannabinoid system. There are also a lot of side effects to the western pharmaceuticals, which I want to try to avoid.
What would you want other people to know about cannabis?
I went to a woman’s cannabis party hosted by Octavia Wellness, where I was able to meet many people in the industry. That was my first experience where I felt like I had something to share and people really related to it and listened. I want people to know how acceptable it is to use cannabis and how I am carrying on with a regular job, a regular life, and I have an eleven-year old child. It’s not scary and there’s nothing taboo about it. I want people to know we can do this without being “high”. The benefits of CBD are profound, the information about the benefits of CBD are spreading by leaps and bounds every day. I am committed to supporting people to heal.
Ironically, that first Octavia Wellness party has opened a pathway for me to help other people. I actually have teamed up with the founder, Carrie Tice and for the past year we have worked on creating a great platform to allow for people like me to be able to become trained in cannabis and become Wellness Consultants. Everyone has people in their personal network who are interested in learning about cannabis- and they may not feel comfortable going to dispensaries - we have solved this by making the process personal. We are passionate about giving people safe and legal access to trusted information and products. It's quite empowering!
Does the stigma attached to cannabis have merit?
Cannabis can be recreational and I have nothing against recreational cannabis. Sometimes having some THC at night helps me sleep. The benefits we get from the whole, healing plant, if we use it responsibly, are endless. Marijuana is a natural anti-inflammatory; it is a better anti-inflammatory than ibuprofen or anything like that. I’ve heard many lectures about the benefits of cannabis for PTSD, cancer, and many other conditions. I believe all illnesses are caused by some form of inflammation, and cannabis works to alleviate that. If we can get rid of the inflammation, have a healthy attitude, healthy diet, and exercise, we can avoid a lot of illnesses. Cannabis can’t do it alone, but neither can any pharmaceuticals. There are so many healing modalities and there should not be any stigma around cannabis because it is a beautiful, healing plant.
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