My husband, Tom, was diagnosed with ALS almost two years ago, at age 48. Since he was a man who had never been sick in his life and was not one to sit still, this diagnosis was a shock to us. This disease is progressively rendering all the muscles in his body useless, as the ability for the nerves to communicate with the muscles diminishes over time. “It makes a person a prisoner in his own body” is how my husband describes the disease.
ALS causes a person’s muscles to weaken. Indeed due to short-circuiting in the brain, patients with ALS experience almost persistent muscle fasciculations (twitches) that are extremely uncomfortable. They also experience a serious decline in their ability to speak, eat, and breathe. Due to this complication, they produce more saliva, making it even more difficult to communicate with those around them. People with ALS have difficulty maintaining their weight, as eating can be such a struggle. Sleeping can be difficult due to the muscle spasms and the inability to move easily. As there is no cure for ALS, it was important for us to research alternative therapies to allow Tom the greatest quality of life possible.
We are a family that tries to eat and live in respect to the earth. We avoid pharmaceuticals because of the potential harm they cause the body. When Tom was diagnosed, he was offered a plethora of pharmaceutical medications to reduce some of the symptoms, but none to cure the disease. Tom declined those medications and continues to do so today. Tom chose to research natural remedies for his symptoms and discovered that a protocol of supplements and cannabis was the least harmful to his health.
After exhaustive research and experimentation with a chemist, Tom was able to create a tincture high in CBD, the element in cannabis most helpful to his condition. The results of taking this tincture throughout the day were beneficial to Tom’s daily living. When taking this tincture regularly, Tom experiences freedom from the pain of muscle fasciculations and is able to speak more clearly since his muscles are relaxed. Taking cannabis assures that Tom will have an appetite, and he has been amazingly able to maintain his weight throughout his diagnosis, which is rare. Cannabis also causes dry mouth, which helps decrease his overabundance of saliva, making it easier and more comfortable to eat and communicate. There is a marked difference in all of these effects when Tom does not engage in his cannabis tincture, and a weakness of limb that leaves Tom tired and inactive.
Tom attends an ALS clinic once every three months at Massachusetts General Hospital. The doctors there are puzzled by his slow progression of the disease, as it normally ravages the body completely in a time frame of two to five years. Tom has been open with his doctors about his use of supplements and cannabis, and he encourages them at every visit to begin testing these treatments, since Massachusetts General is one of the world’s leaders in clinical trials of medications to treat ALS. His doctors do not seem convinced, but they understand that there is no cure and think that patients should do whatever helps to make them comfortable. At every visit, Tom continues to have conversations with his doctors about the benefits of cannabis oil. He has inspired friends with the disease to try cannabis, and they have all had results that help alleviate their symptoms.
We are so relieved that medical marijuana is becoming increasingly available throughout the country. Having done so much research, Tom is very particular about the medications he uses to treat his condition, and his peace of mind is paramount. We can only hope that some of the money raised from the ALS “Ice Bucket Challenge” will be used to further study the effects of cannabis on patients with ALS.
The most important lesson we have learned is that one must be grateful for today, for it is truly all we have. Life is to be lived, as comfortably and as peacefully as possible.
Cara Childs, 44, was born and raised in Chelmsford, MA and studied literature at U-Mass. Cara works as an ed-tech with autistic and/or abused teens, and is a Therapeutic Crisis Intervention Specialist and Trainer. She loves hiking, gardening, theatre, and has veracious appetite for reading books.
Tom Childs, 50, was born and raised in New Rochelle, NY and studied civil engineering and construction management at U-Maine. Tom worked as field engineer, project engineer and safety specialist for a number of large construction firms, and was owner/operator of Horizon Builders (in partnership with my brother) for 12 years until his diagnosis. He loves building anything, has a passion for restoration projects, and lives for sailing iceboats. Cara and Tom have lived in Maine for about 15 years. They we have two sons who are 14 and 11 years old, a BIG dog, two cats, and a turtle.