Author: Sue Pondrom, ALS/MND Patient Fellow
I’ve heard anecdotal accounts and references to actual research studies that support the use of cannabis (marijuana) for relief of amyotrophic lateral sclerosis (ALS) symptoms such as pain, muscle spasms, even insomnia. I am most interested in the use of cannabis to reduce anxiety, stress and decrease depression. I was diagnosed with Bulbar-onset ALS in March 2017 and try as I might, I can’t put a positive, forward looking face on my disease.
That’s why I wanted to attend a portion of the 15th Annual Allied Professionals Forum December 7, 2917 in Boston, Massachusetts. It was titled “Cannabis and its Usage in Symptom Management of ALS/MND.,” I was already in town for the 28th international Symposium on ALS/MND, which started the next day. My participation in the symposium was thanks to a group of non-profit organization staff, researchers, academicians and philanthropic individuals who funded attendance for a limited number of patients. Their goal was to bring patients together with researchers to ask questions and share information, and increase the dissemination of ALS research information in a patient’s “voice”. We patient fellows chose to attend sessions that interested us.
Speaker Leslie Ryan of the Rocky Mountain Chapter of the ALS Association, represented associations throughout the US who had participated in a 2017 survey of why and how patients were using cannabis.
Among the survey findings:
65% of the 500 responses from throughout the US said they were not using cannabis; 5% had used it, but stopped; and 30% were current users. The majority of non-users either didn’t use by personal choice or because it was illegal where they lived. For 17%, it had never been offered as an option.
93% of respondents whom reported using cannabis said they believed cannabis had been effective in managing their symptoms, which included pain, cramping, muscle spasms, anxiety, insomnia and weight loss. Patients reported various means of administration (smoking, edibles, oils, creams) but for the most part, didn’t know what type of cannabis they were receiving, i.e. CBD (medical cannabis) or THC, the “high” variety.
Regarding support of the health care team:
- 44% of patients have not discussed cannabis with their health care team
- 43% believed the team was supportive but had not yet prescribed cannabis
- 9% said their doctors prescribed the drug
- 4% were told by their doctors not to use it.
And then there was the part of the survey that particularly interested me.
91% of those using cannabis said it improved their quality of life by decreasing anxiety, stress, drooling and depression. They had more energy to complete tasks, less fatigue, they slept better and had decreased insomnia. Patients even experienced increased intimacy and sex drive. 60% said cannabis helped them cope with ALS and its progression. Ms Ryan said these findings were as important to them as the physical results.
It was more than enough for me. My neurologist has said he would prescribe cannabis and it’s my first request when I see him at the next ALS Clinic.
NOTE: A recording of Ms Ryan’s presentation is made available by the conference organizers online here.