by Missouri Health & Wellness
At age 14, Beka (now 35) was diagnosed with Multiple Sclerosis. This is her Canna-Story.
Imagine being diagnosed with Multiple Sclerosis at the age of 14. Beka, now 35 and married with a fur-baby named Ryder, was in her 8th grade art class in 2001 when she started experiencing double-vision and was having trouble holding her pencil. Uncertain of what was happening, she asked to be excused to go to the bathroom and was having trouble walking so she had to cling to the wall to hold herself up. Unable to shake what was a going on she went to the school nurse and her family immediately took her to the hospital. After a barrage of tests and a brain scan that showed numerous lesions, she and her family were told she had brain tumors and was going to die.
Her family wasn’t willing to accept that diagnosis and took her to another hospital where more doctors ran more tests and after 5 days Beka was finally diagnosed with Multiple Sclerosis. Her brain scans showed over 20 lesions at age 14.
Life for Beka and her family changed in an instant! They were faced with the reality that their little girl was going to need on-going care, so her mom changed professions to dedicate more time to her daughter. As they looked back at different incidents when Beka was younger, they realized there were symptoms some number of years prior to her actual diagnosis. It is very rare for someone so young to be diagnosed with this disease. So rare, that a case study was published in 2001 about her Ring-Enhancing Lesions in Child (Journal of Child Neurology, Volume 17, Number 1, January 2002).
Multiple sclerosis (MS) is a disease that impacts the brain and spinal cord which make up the central nervous system and controls everything we do. The exact cause of MS is unknown, but we do know that something triggers the immune system to attack the brain and spinal cord. The resulting damage to myelin, the protective layer insulating wire-like nerve fibers, disrupts signals to and from the brain. This interruption of communication signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. (nationalmssociety.org)
The Treatments Begin
Immediately upon diagnosing Beka with MS, the doctors started a high dose of steroids, which cleared her vision and enabled her to walk. However, there were serious side effects, such as extreme bloating, which caused her to gain 40 – 50 pounds. Steroids also cause agitation and personality changes, which impacted her personal relationships as there were days her mom would recommend her friends not visit. The doctors said the disease was so advanced that she would be unable to walk across the stage at her high school graduation in four years. Through the positive, strong-willed mindset that was instilled from her family, Beka walked across that graduation stage and wasn’t willing to stop there.
As her first course of treatment, she was prescribed Avonex, a MS Disease Modifying Therapy (DMT) used to treat relapsing forms of MS. The medication was administered as an inner-muscular shot once per week in hopes of shrinking and controlling further growth of the lesions in her brain. The only person Beka would allow to give her the shot was her sister, who would travel one hour each way to administer it. The shot was very painful and of course came with a myriad of side effects, one of which was extreme body chills. So extreme they would wipe out her already exhausted body. Later her doctor switched her to a different DMT, Rebif, which required 3 shots weekly. The shot came with an auto-injector and was administered under the skin, so it wasn’t as painful. There were still a myriad of side effects, including headaches and injection site swelling, which led to an abscess. Despite her strong will, her disease was getting more and more challenging to manage and her doctor started her on Novantrone, which was a form of chemotherapy she’d do every three months for two years. As with any form of chemo, the side effects are worse than the treatment. Her depression worsened, her fatigue increased tenfold, her memory was failing her, and simple acts of brushing her hair required the help of a nearby college friend because Beka hated seeing the amount of hair loss.
Beka was determined to complete college and went to a local University so she could be near family. She needed braces to help her with her abnormal gait, but because they were bulky and stiff, they also made it difficult to walk and she was falling a lot. She had very little strength to get herself up and would need to ask at least two strangers for help getting up. The numerous falls were causing injuries to her knees and wrists and after an incident where she was almost hit by a car in the traffic lane while crossing the street to get to class, her doctor insisted she start using a cane. She reluctantly agreed. Despite the many challenges she faced, Beka again defied the odds and walked across the stage at her college graduation.
Even with the cane and a new DMT, Gilenya, by 2012 (age 25) she could only walk 50-100 steps which would exhaust her for several hours. As such, she would wait to go to the bathroom, bladder spasticity being another symptom, and she would often have accidents. Embarrassed and frustrated she’d have to leave work. Life consisted of: waking up, getting ready for work, working, maybe eating dinner, if she wasn’t already asleep, and in bed by 630-7 because her body was exhausted. Thankfully, her mom would stay with her to help with day-to-day activities, but Beka’s condition was declining.
She had drop foot in both feet, which made it increasingly difficult to walk, even with a cane or walker. And she was still falling 3-5 times a day. She was told to start wearing Bioness nerve stimulators, which she referred to as ‘Shockers’, because they would shock the nerve to help pick up the foot. The nerve stimulators were painful and would leave burns on her skin, but they helped her to keep living her day-to-day life. MS injures the nervous system which causes neuropathy, which ironically helped dull the pain in her feet, but she still endured a great deal of discomfort day-after-day.
Then she met Andrew on a blind date. They got engaged in February 2014 and later married in 2015. Andrew worked in orthotics/prosthetics and understood what she was dealing with and was able to help her with physical therapy. He also saw potential in cannabis curing neuropathways, just having gotten his degree in neuroscience.
The Introduction of Cannabis as Medicine
Beka’s condition was deteriorating and desperate for relief, she wanted to try cannabis. However, there was no way to know the quality or attributes of what was available since there wasn’t a legal medical cannabis program in Missouri. What they were able to try provided minor relief, mainly with stress and mental exhaustion. Then Andrew took a job in Oregon, where there was a well-established Medical Cannabis program. Beka talked to her doctor and he supported her trying it. Oregon had very high-quality cannabis and in less than a week they noticed a real improvement in her symptoms. Within two weeks of smoking medical-grade cannabis, her bladder control improved and Beka was taken off the bladder control medicine she swore she would take for the rest of her life!
Andrew has Crohn’s disease and in 2016 it flared up when he couldn’t afford his pharmaceutical medications because of a gap in access to his health insurance. Between his Crohn’s disease and Beka’s MS, they needed to take six months off to recuperate. Beka wanted to start moving her body and they began visiting the many local trails near them in Oregon. Andrew noticed improvement in her gait when she smoked cannabis. When she would start dragging her feet on their walks, he had her take another hit, and she was able to continue walking without drop foot issues. They decided to start experimenting with other cannabis products and tried RSO, a very potent cannabis medicine. They continued working on her endurance by going on regular walks and continued to see improvement. They did a lot of slow walking, using a cane and holding Andrew’s hand for support and saw her endurance levels continue to improve.
One year later, in 2017, she built up enough endurance to do the MS walk in Oregon. She had been in MS walks several times but was always pushed in a wheelchair. This time she was able to walk it with her cane, and although it was slow and painful, she completed the walk! Afterwards, she was determined to stop using the cane and Andrew started being her support while walking. A few months later, she took her first steps without a cane or any outside help – a first since 2009. For her 30th birthday party in 2017, she was able to walk through the door without the need of a wheelchair or cane. Instantly causing many guests at the surprise party to start crying tears of joy, especially her parents.
Every doctor told her as her walking deteriorated, she would never recover it and as Beka’s MS progressed, she would permanently depend on assistive devices to walk. Today she is able to walk on her own without assistance of any kind and they attribute it to cannabis! People who didn’t know her during the early days of her diagnosis, would never know she has MS or ever had severe walking impairments. It has been 21 years since being diagnosed – she started using cannabis in 2012. After the move to and having access to Oregon’s high-quality, medical-grade cannabis Beka saw dramatic improvements in her condition. She went from only being able to walk 50 – 100 steps to walking 1 – 2 miles. What was most unexpected was her doctors near disbelief and amazement at the improvement in her scans; it seems her disease is no longer progressing. She regained feeling in her legs and toes, which has helped her develop stumble recovery so she’s not falling anymore.
In April of 2018, Andrews pharmaceutical medicine for his Crohn’s disease was no longer effective. With his own health declining, he was having trouble working full time, so they decided to move back home to be closer to their support network.
Upon returning to Missouri, some of her doctors were unsupportive of cannabis use, but she visited a pain management doctor who encouraged it as a treatment option. He even spoke at a seminar where he recommended THC/CBD. Beka and Andrew were shocked to hear a doctor finally recommending cannabis in Missouri. Missouri’s Medical Marijuana program was approved in 2018 and they would soon have access to high-quality medical cannabis again.
Beka’s Doctor, who had not seen her in several years since her condition worsened, was shocked to see improvement instead of further deterioration. The doctor didn’t know what to do about it and said, “What do you need me for?! You are doing so much better all you need to see me for is to refill your prescriptions and your annual MRI.” Her neurologist was also shocked at the level of improvement and is now willing to authorize cannabis use for his patients.
Beka’s experience has led her to believe in the healing properties of cannabis as medicine. However, due to the limited research and availability of information, it is a trial-and-error process. She knows firsthand that it can be a challenge to figure out how to proceed with getting the right medicine while having to be your own advocate. She leads an MS support group where she is able to help people learn about the benefits of medical cannabis. The combination of THC and CBD helps her more than any other medications she was prescribed and can counteract many of the side effects they cause. Beka has found that tinctures, salves, and RSO have been the most impactful in helping her symptoms.
When asked what they would say to someone who wants to try cannabis as medicine, Beka and Andrew both agreed, “Dispensaries are the best resource for learning about different products, strains, and terpenes.” They also stressed the importance of high quality, medical-grade cannabis that has been tested. Oregon and Missouri have high testing standards that produce higher quality medicine and as the Missouri program develops and more products become available, we will see better and better medicine on the market. They recommend, “Trying medical-grade cannabis and to work with your budtender to help find what may work and ALWAYS start with a low dose and go slow.” Another notable point they made was that high THC is not necessarily what you need to see the benefits. They also suggested, “Beginners looking for help with chronic pain should try combining products that have both CBD and THC. Most importantly, don’t be afraid of trying it.”
Though Beka has seen dramatic improvement in her condition, she is still on eight different medications, all of which are for symptoms of the disease. She takes medication for the daily pain, memory issues, depression, migraines, and of course her MS meds her Mom told her she could not stop taking.
Andrew also found enormous relief from his Crohn’s disease by medicating with cannabis. Both of their families are now full supporters and even investing in medical cannabis because of the noticeable benefits. Their families know it is their medicine and the relief they get is unmatched compared to the pharmaceuticals prescribed. Despite the challenges she and Andrew face on a daily basis, they support each other and have a good attitude. Her family provided a lot of support and taught her to never give up from a very young age.
When I asked Beka and Andrew what they would say to people who disagree with cannabis, they said, “We’re not looking to get high, we use it for therapeutic reasons.” Beka says that smoking medicates her body, rather than making her feel high.
Cannabis Is Their Medicine!
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