Get Thee to a Dispensary: Managing Muscular Dystrophy with Medical Marijuana

Managing the physical and emotional strains of a chronic condition can be challenging, sometimes in the extreme. Anything that alleviates tension and pain while improving functionality is a welcomed godsend bordering on the miraculous.

I speak from experience. As someone living with advanced facioscapulohumeral dystrophy (FSHD), I have tried everything to retard and improve my condition (read more: Almost Dying for a Cure). And so far nothing, and I mean nothing, has worked as well to fortify my body and comfort my soul more than THC gummies and CBD.

I’m compelled to share the following findings with anyone who may benefit because I wish I knew this information years ago! I have included the observations of many people in my circle of care who are faithful witnesses to my medical journey with muscular dystrophy.

As a disclaimer, I’m neither a doctor nor a dispensary specialist. But this ongoing experiment has proven immensely helpful for me both physically and emotionally. If what follows betters the life of even one other person seeking relief or furthers scientific inquiry, it will be worth sharing.

Since experimenting with medical marijuana, Claire’s quality of life has improved vastly. She is able to move more, giving her confidence and joy in being able to do the little things in life again, like eating a cookie on her own, turning off the shower, or holding a glass of water. The best change is to see her beautiful smile. Smiling can be particularly hard for someone with FSHD; THC gummies have given her a chance to express friendliness and love again.

Melissa T., Caregiver

Marijuana 101

If you already know what THC, CBD, and CBN stand for in marijuana lingo, scroll ahead. Otherwise, start here for some basic cannabis fun facts (click on each word to read more):

• Marijuana: Also referred to as cannabis, weed, herb, pot, grass, bud, ganja, and Mary Jane, marijuana is a greenish-gray mixture of the dried flowers from the Cannabis plant. There are two main strains: indica and sativa.
• THC (delta-9-tetrahydrocannabinol): The main psychoactive (mind-altering) chemical in marijuana responsible for most of the medicinal benefits that people seek.
• CBD (cannabidiol): A naturally occurring compound in marijuana. It is a non-addictive substance with significant therapeutic attributes claimed to provide relief for chronic pain, anxiety, inflammation, depression, and many other conditions.
• CBN (cannabinol): A minor active ingredient found in marijuana. It’s known as the cannabinoid with the greatest sedative properties. Research has shown it may be used to treat anxiety, pain, glaucoma, psoriasis and assist with potential bone tissue growth.
• Indica: A strain of cannabis that promotes sleep, relieves stress and anxiety, relaxes muscles, and decreases inflammation and pain.
• Sativa: A strain of cannabis that alleviates depression and anxiety, increases focus, increases energy to reduce fatigue, stimulates appetite, and reduces pain.

I am amazed at the difference in Claire since she started taking THC gummies with CBD oil. Her hands and body muscles are less tense, enabling her to speak more clearly. There’s a dramatic difference in her energy level, as well as her ability to move more freely, including visibly improved body balance and range of motion in the pool. Claire’s overall mental relief from anxiety and stress has allowed her fun personality to come through more easily. I’m thrilled to see her relaxed and able to laugh more often.

Kimberly H., Caregiver

Overcoming Resistance

While those of us whose lives are impacted by muscular dystrophy desperately await a cure and effective treatments, medical marijuana can mitigate symptoms associated with the disease such as muscle spasms, depression, anxiety, and sleep disorders. According to Elevate Holistics, “Medical marijuana and muscular dystrophy have been studied and the results, so far, are quite promising. When a person is using marijuana, muscle pain is often reported to diminish. That is due to CBD or cannabinoids, that reduce inflammation and help encourage relaxation of the muscles.”

Due to advancing FSHD, at age 57, I was feeling like a once perky helium balloon now barely buoyed up with what air remained. I talked in labored whispers. My nervous system was completely shot; high anxiety weighted my heart like a wet rug. And I wasn’t sleeping.

It was the chronic insomnia that first led me to try THC gummies, something my – hut hum – older and wiser husband had been encouraging me to take for years. But as a teen during the Reagan era and its culturally prejudiced values prescribed for middle class America, I just said no to drugs, and I drank very little, mostly because doing so gave me nasty headaches.

Luckily, in the Biden era, the cultivation, sale, and consumption of CBD/THC products are legal in most states. Medical marijuana has greatly improved my quality of life, and without all the drama Nancy Reagan wrongly warned of when it comes to marijuana. I’m sleeping better, longer and more deeply; experiencing far less muscle tension, which reduces spasming; I clearly have more energy, which is precious fuel for socializing, working out, and boosting overall mood. Like Shakespeare’s Malvolio (in Twelfth Night Act 2, scene 5), I am surprised and delighted to find myself smiling and happy again. Living with FSHD continues to be challenging, but it’s a heck of a lot more manageable both physically and emotionally with medical marijuana in my tool box.

Through the course of just a few weeks I have noticed so much improvement in Claire – physically, mentally, and emotionally – thanks to marijuana edibles. I feel a loosening of tension in Claire, especially when transferring or adjusting her body positions. I am amazed to see her throwing and catching a ball in the pool! It’s fantastic to know that a natural herb from the earth can provide relief for someone who has so much more life to live!

Josh M., Caregiver

What’s going on?

Out of sheer curiosity, and just to make sure that my husband, friends, and caregivers weren’t imagining positive changes – muscle growth, louder speech, improved functionality, etc. – I decided not to immediately tell my physical therapist about the use of medical marijuana to see if she would notice changes.

She noticed alright, and right away! Here’s what my physical therapist Renee S. had to say:

I first noticed Claire’s voice was stronger and louder, and she sustained a conversation throughout the whole hour. There was considerably less tension throughout her body, especially the left hip, (usually there was a limitation compared to the right hip).

I asked her several times, “What’s going on with you? There’s something different.”

Claire just smiled.

I thought maybe her battery got recharged after a week off.

In the second session a week later, even though she was fatigued, her voice was strong throughout our time together. I again noticed less tension throughout her body and greater range of motion. She was able to move parts of her body on her own using her newly gained body power. Claire gripped my arm and sustained the grip. Claire also showed improved facial features, with cheekbone definition and evenness of her beautiful smile.

Again in this session, I commented, “Wow, there’s something different about you!”

This time Claire couldn’t resist. She told me about introducing THC gummies and CBD oil into her medications, and what a positive difference they have made. She and her husband Lou were encouraged by my candid observations.

While taking medical marijuana, Claire shows less tension throughout her physical system while being better able to engage and work her muscle groups.

Claire started to experiment with THC gummy dosages about four weeks ago. Her progress in getting her body back has tremendously improved our relationship. By watching her body being able to do some things on her own again – smiling more beautifully (if that’s possible), laughing louder, talking longer, eating with a fork occasionally, and building muscle mass – has also created changes in me, mainly a deeper calm and acceptance. I thought that I had lost her because of her lack of movement, depression and anxiety; but now she is coming back, and I find this transformation to be miraculous. Add to this her determination to continue living life to its fullest every day. I envision Claire at some point using her walker to walk on her own again.

Lou C., Loving Husband

Starting Small with Big Results

Note: Every body is different. The following dosages work for me, a 130 lbs, small-boned female with FSHD1. Again, as a disclaimer, I am neither a doctor nor a dispensary specialist.

I am finding enormous benefits from both sativa and indica strains of THC gummies combined with CBD in the tincture form. I am using Wyld brand THC gummies.

I started with small doses, approximately 2.5 mg, when taking either strain. Since then, I’ve been experimenting with dosage and timing for over a month now, settling in on 2.5 to 5 mg, of either single strain or when combining strains.

Sativa is very beneficial in the morning and when going to the pool in the afternoon. It helps with energy and enhances movement.

Indica and sativa equally dosed have been helpful when my husband takes me on long car rides; my body relaxes and my mind feels calmer allowing us to venture out further from home.

Indica alone is helpful for reducing leg restlessness and inflammation, which is beneficial for watching tv with less cramping and promotes sleep. Indica gummies that have CBN leave me too drowsy the next day.

I take a half a dropper (0.5 mL) three times a day in addition to the THC gummies to further reduce inflammation and anxiety.

Check back for periodic updates.

Helpful Links:

• Article: Marijuana and Muscular Dystrophy
• Article: How Does Marijuana Help Muscular Dystrophy
• Article: Muscular Dystrophies and Medical Cannabis Treatment
• Article: Treating Muscular Dystrophy with Medical Marijuana
• Article: Muscular Dystrophy – Can cannabis offer relief?
• Article: Patient Experiences with Cannabinoids in DM
• Article: Cannabis Extract Improves Spasticity Without Increasing Weakness in Patients With MS (Yes, I know it’s about MS, but it’s extremely interesting.)

Many thanks to Melissa T., Josh M., Kimberly H., Mark R., Renee S., and of course my husband Lou C.