What Would Lou Do?
By Apryl Burnett, Caregiver to a Medical Cannabis Patient
I am a Certified Nurse’s Assistant Home Health Caregiver and for the past six months I have been working for an amazing and resilient woman by the name of Cathy Jordan.
Cathy’s health care plan is unique because of the medicine prescribed and provided to her in her to control the symptoms associated with her disease.
At the age of thirty six, Cathy was diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease.
That was back in 1986, when her doctors only gave her 3 – 5 years to live.
Cathy, now 61, is alive and well! She attributes her healthy state and quality of life to the daily use of medical grade cannabis to be used an anti-inflammatory, anti-oxident, and, most importantly, neuroprotector.
For the past fourteen years, Cathy has been involved in medical cannabis activism, various research studies, the ALS Association, and other organizations and has been instrumental in helping others patients learn how to become advocates for themselves, as well as petition elected officials here in Florida so more seniors like her can have access to the same medicine that she uses to fight her terminal disease.
Patients need to learn how to educate themselves, and how to be advocates after they learn. – Cathy Jordan, ALS patient
It is a daily struggle for Cathy, and due to the fact that she has lost almost 90% of the use of her arms and legs, she has lost the ability to walk, or even stand up, without assistance.
According to her doctors, she shouldn’t be able to feel her limbs but Cathy continues to amaze her medical team, because cannabis controls many of the symptoms she experiences.
Her physicians had her on muscle relaxers causing atrophy in her muscles, and although her prognosis is not a positive one, she is able to minimize her pain and discomfort through her daily use of medical cannabis.
One side effect of cannabis is dry mouth, aka “cottonmouth,” which most people think of as a negative side effect but actually helps Cathy immensely, as she would otherwise have an excess amount of saliva that should could potentially drown in as the muscles in her trachea and esophagus continue to shut down.
Because cannabis is a bronchial dilator, Cathy is also able to open up her pathways and can expel built up mucus and saliva, which many patients suffering with ALS know first hand could benefit from if it were only available for them.
There are many diseases that can be treated with the natural cannabis plant, and there is even a pharmaceutical pill available, which is far less effective due to the fact that it leaves out all the constituents from the plant but one, which is the psycho-active cannabinoid that many seniors don’t necessarily want to feel the effects of.
In the past six months, Cathy has helped me see the light on this plant and as a health care practitioner it is my duty to help shine that light on others who may be suffering and those who can help create safe access for people like Cathy.
To support Cathy and aid her on her sojourn, I accompanied her to the Florida state capital building in Tallahassee.
There were many other cannabis patients there, and many other patient advocacy groups, strengthening their coalitions that had built up and uniting behind Representative Jeff Clemons, who was introducing HJR 1407, a medical cannabis bill for patients suffering, at a press conference.
Cathy, who was asked to speak, read a statement but due to her disease Rep. Clemons repeated her word-for-word.
Others at the press conference include Florida Senator Mike Bennet, Patients Out of Time’s Mary-Lynn Mathre, Florida Cannabis Patient Network, and Amy Cavanaugh, to name a few.
The remainder of the day in Tallahassee, Cathy had me chasing her around the Capital building while she buzzed through the hall in her power chair, meeting other representatives, advocates, and patients, sharing similar stories and strengthening the coalitions and relationships created at the day’s event, including media relationships that followed up with a news segment on Cathy shortly after we returned home.
As we ate lunch in the cafeteria, a cop was doing the same and Cathy was excited to engage him in a conversation. He mentioned to us that if he had to watch a loved one suffer and knew there was a medicine that would help take some suffering away that medication should be available.
It’s as easy as that.
Nobody wants to see people suffer and if we show them people are suffering more and more people will ask what they can do to help. I must admit, this was my first experience with anything involving activism and I learned a lot about how laws are made; we even made it into the attorney general’s office while on our “Rep. Route” before lunch!
Representative Clemons reminded Floridians that 85% of all oxycontin prescriptions are written in their state, and seven people each day die from an overdose in Florida alone.
Despite the difficulties in making a six hour trip, Cathy’s condition, and finding suitable accommodations, she endured the distance gracefully and continues to be determined to advocate for her own health care and to be an example for others to do the same, whispering for her representative to repeat: “patients need to learn how to educate themselves, and how to be advocates after they learn.”