Well it is the beginning of April 2018 and my condition has progressed for the worse. The mornings, are especially the most challenging. Getting ready for work and on the drive to work I have noticed the tremors are increasing. My neurologist has now prescribed Amantadine in 100mg doses. She said to only take them when I need them. They do help but, more drugs and WOW they are $140 for 40 of them!!! Well, since there is NO POSSIBLY WAY we can afford that, my husband started looking for the cheapest place to get them. He discovered that, the capsules are far cheaper than the tablet and that 53 of them is cheaper than 40 of them! So, I went through the process of trying to contact my neurologist to see if the prescription could be altered to meet our financial capabilities. Not to go off subject but, shouldn’t it be EASY to contact your doctor?
Anyhow, eventually, after a week of leaving messages and so on, my husband started calling the office and finally got results. As I mentioned before, he is appalled with the medical business and does not shy away from letting ANYONE know especially, when it takes a week to ask a simple question! It is already $75 just to walk in for a 5 minute visit so, you may often ponder what you are actually paying for. $75 is actually the lowest price we could find for a neurologist office visit. Two days pay for a five minute visit and the doctor probably makes more than that per hour? Yes, the system is broken. [UPDATE 2023: We now pay $185 for an office visit and that is WITH some assistance from BayCare!]
Back to my disease and Amantadine. The neurologist (our previous neurologist) prescribed the most expensive version of the drug, go figure. After our requests were finally received and our simple question was finally comprehended and addressed, the prescription was changed to 53 100mg capsules. This cut the price IN HALF!!! We typically get our prescriptions at Sam’s Club because with our Plus membership, our other prescriptions are super inexpensive, cheaper than anywhere. So, by default we had the prescription called into Sam’s. My husband found a coupon on GoodRX which, is how he discovered the capsules vs the pills (and higher quantity) were far less expensive. He was delighted to find he could get these through Wal-Mart pharmacy for about $45! When Sam’s Club called to tell us my prescription was ready, my husband mentioned the GoodRX coupon. They said Well, we don’t take those here.
WHAT THE WHA?? We understand the reason why no coupons are accepted on groceries there but, at the pharmacy? Sam’s Club IS Wal-Mart so, why not??? We already fill four prescriptions a month at Sam’s so, now we have to go to yet another pharmacy, owned by the same company? System is broken people, it is broken. SO… hubby called Wal-Mart, just two blocks away from Sam’s Club, and they said they cannot transfer prescriptions to or from each others pharmacies… You MUST be kidding right? ITS THE SAME COMPANY! Anyhow, so now hubby and I are back on the phone trying to get a hold of the neurologists office once again. A few days later, they called the prescription in to Wal-Mart pharmacy. Wal-Mart pharmacy called to say prescription was ready about five days later. You see, they had to order the less expensive capsule version because they only stock the most expensive tablet form version! VERY INTERESTING to say the least. My husband mentioned the GoodRX coupon and amazingly, all was a go at ~$45! He went to pick them up. Took a couple weeks to finally get the prescription in my hands but, DONE.. finally. Just because its simple doesn’t mean its easy! Pretty ridiculous right?
Early Detection
There were previously many small symptoms that have come to full fruition. Some of these were apparent YEARS before my condition progressed to last year when I was diagnosed. My husband noticed them, I did not. My cognitive skills, sense of direction and ability to reason through a situation. Although many things, that may seem like silly personality quirks such as; forgetting where I parked or walking into a mall and heading in the wrong direction although I know exactly where the store is located as well as short term cognition issues have plagued me for years.
Another issue my husband noticed a few YEARS AGO was my sense of smell. Those of you with cats are familiar with the scent when one of your furry children leaves a fresh litter box present. Every now and then, one particular litter box event rises over the norm in pungency. Well, we live in a 700sq foot home and the litter boxes are all within our noses zone. Fellow cat owners may know that while sitting watching TV or listening to music and a kitty non-typically bolts out of the litter box at warp speed, that is an indicator of what may come. My husband will sometimes raise his eyebrows and yell something like WHEW! what the #### did that cat eat! before he heads off to grab a litter scoop and address the situation. Well, he noticed a few years ago that I was relatively immune to the smell. I actually had to take a whiff of the air to realize something was a bit sour. (See Loss of sense of smell is earliest sign) Remember, I was diagnosed less than a year ago but, this indicates that I have had these symptoms previously. Should you know anyone who has similar issues, take it seriously. I can pretty much assume that if I had a DAT Scan performed five years ago or even farther back, my disease would have been detected.
What’s it like to have Parkinson’s
Thankfully, I am not in severely advanced stages right now but, I can try to explain what it feels like. I work with complex software at work and do a lot of data entry, no problem learning and doing my job, for now but, sometimes my brain just does not do what my mind tells it to do. Have you ever taken a step up or down the last stair but, you already did? Another analogy; Have you ever taken a drink from a cup or glass only to spill it down your chest? You know how to sip from the glass, you have done it many times but, sometimes something goes awry. The best comparison I can make is; imagine if you were a pianist, sitting at a piano and you hear in your mind what you are supposed to play but, your fingers just cant push the right keys.
A lack of communication between your mind, brain and motor skills like some kind of blockage. Kind of like a painstaking search for that key on the computer keyboard but, you are an excellent typist. Add uncontrollable tremors, bouts of depression, the knowledge that it’ll only get far worse and there is no cure, then throw $75 a week from your households grocery money into medication and that’s what it feels like to have Parkinson’s.