Statistical Likelihood. I heard Jeff say that term in passing conversation and it got me thinking about my June 2 clinic visit.
What is the likelihood of a person spending an afternoon discussing options on adapting to and coping with an increasing debilitating motor neuron disease, ALS?
About 1 per 100,000 people.
What is the likelihood of me taking Quinine?
Quinine is a drug used to treat malaria and severe muscle cramps. In my case it would be used to treat my nightly leg cramps. The clinic pharmacist mentioned its $200 a month price tag. Yikes $200? It wouldn't be my most expensive med, but that is pricey. I said that we would price check on that drug with my sister who lives in the D.R. Congo because surely they have it there. The pharmacists response was to say, "You are freaking out the pharmacist with that talk about purchasing meds. from Africa!"
My sis. did check prices for me and said their Quinine comes from France and if purchased from a reputable pharmacy it runs around $8. So my answer is that I don't know if I'm going to take it. My main concern are potential negative side effects so I ought to study it out more.
What is the likelihood of me implementing the various suggestions I received like getting a light weight wheelchair for Jeff to push me in, and start using my hiking poles for added balance in everyday walking?
Not going to be happening yet for the wheelchair, but the hiking poles...I am getting closer to accepting that.
Here is where someone says, "Janae, why are you being so stubborn? If you were to implement these devices you could conserve your energy and be able to enjoy some of the activities you enjoy. Sure you can't walk all the way around the lake, but if you took a wheelchair you could walk part of the way and then Jeff could push you the rest of the way."
And now here is my response. I am not so worried what people think, I am more bothered by the patronizing treatment that sometimes comes when people realize you have a physical disability. The other day I was struggling with a relatively simple task. Afterward a stranger who was standing nearby smiled at me and said, "Good job!" I know her intentions were good but it left me feeling like a 5 year old being patted on the head.
I'm still here mentally. I know when you are staring at me and your whispers are not as quiet as you think they are, so just go ahead and ask your question. It's okay. Some days I respond with unintended irritation & sharpness. My apologies in advance.
On this one the clinic staff are right (ouch, that was hard to say...haha). I need to let go of my pride, accept the wheelchair advice, and recognize and appreciate the good intentions and kind acts.
I truly am grateful but still struggle with how to be gracious.
What is the likelihood of a cure being found anytime soon?
There are so many studies being done. Research on how to cure the disease and research on what causes it in the first place. Unfortunately there aren't definite answers. This of course means I had better warm up to the idea of a wheelchair.
That is it for now.