APRIL/15One just can not go on Facebook, and not be made aware of the variety of charities seeking to bring awareness to the cause. This month, April, is dedicated to Autism, and Parkinson's awareness. Both close to my heart, but Parkinson's being the one that I live with each and every day.
You will notice an influx of facts, research opportunities, and current statistics. What I want to bring to you are some of the personal issues that a person with Parkinson's (PWP) ,must deal with daily. I present these, not to seek sympathy, rather renew how you envision a PWP to be.
*It is not necessarily a right of passage for the elderly. Generally the assumption is that the average PWP will be in their 70-80's. Much like Dementia, right? I was diagnosed at age 47, and have since met people as young as 21 carrying around this burden. Age is not a factor.
*Heredity is not a factor. Many PWP do not have a strong lineage of Parkinson's Disease. Personally, I have no knowledge of a blood relative to have been diagnosed. From my own reading and research, this is not uncommon, and environmental factors such as prolonged exposure to pesticides, has been one area of study.
*Parkinson's means a person tremors. I was finally diagnosed when my right hand tremor became evident, and caused me to experience difficulties in hand writing and fine motor control. But once you receive the right medication, the tremors are the least of your worries. Some days it may be nonexistent. This of course, is dependent on your stress levels, I find. The shaking movements of Michael J. Fox, are the symptom of medication, rather than Parkinsons. This is called dyskenesia, and can be expected to experience this as medication dosages are adjusted and increased. There are also people who never experience tremors.
*Slow down. The Specialist explained to me that life would be slow. And that basically sums it all up. I am slower to move, to get organized, to speak, to process my thoughts. Please have patience. Trying to get my wallet out of my purse, grab the cash out of the wallet, be handed back change therefore having to return the money to my wallet, wallet to purse....takes forever. I feel the time creeping along, as I do the frustration of levels of people behind me. After all, I'm only 50, and show no outwardly signs of an illness.
*I have discussed the deep rooted feelings of apathy. I often want to join you for a coffee, go out with friends for an evening, or go away for a weekend. But apathy kicks in, and I not only have the apathy to forge through, I suddenly have the anxiety developing that will combine to make me turn down that lovely invitation. I want to....I think I do. Apathy makes me feel....nothing. But in my head, I want to go out, socialize like I use to. But I am only feeling pressure. It seems to be better that you come to visit me. You can depend on the fact that at least you know for sure....I will be home.
*The anxiety comes from a multitude of things. Being slow in a fast moving world. Having to follow and participate in a conversation when my brain is throwing up blank walls in front of my thoughts. Completely empty white boards in my brain when I feel the pressure to give an answer or response right away. The anxiety that I will have to take my medication on time, and hope it kicks in when I need it to.
*Fatigue is beyond comprehensible. It is just not a normal way to live. Our sleep patterns are distorted. I, for example, go to bed around 1:00. I will sleep until 8:00, if I am lucky, wake up to take my meds, then head back to bed until 11:00. If I don't follow this messed up routine, I will be far too exhausted to participate tomorrow. In anything. My routine is successful if I stick to it, but life isn't always that forgiving, so days when I have to remain awake throughout the morning, will impact the kind of day I will be facing tomorrow.
*Disruptive sleep is usually due to the rigidity the seeps through my bones I take my medication every four hours to help alleviate the stiffness, so to sleep for more than four hours causes my body to, in essence, lock up. My body does not shut down, it tremors inside, and when I lay down, it is as if I want to jump out of my skin. So, as a result, I have come to depend on sleep medication. It becomes a vicious circle, as this adds to the fatigue.
*Lately, I've been receiving comments that I am quiet, or look unhappy. It is a struggle on some days to communicate verbally. And my face is getting that, "mask", that stone face look that I am not aware of. These things I need to work on, so please be patient and know that I am present....
*Finally, if I had to share one important bit of information with the world, it would be not to pity us....rather, be patient with us. When we speak, move, and think, remember that it all takes great effort, so your patience and support is what will get us through the rough spots.
This April, let Parkinson's Awareness into your life. Chances are, you will know someone in your life time that will be diagnosed, a family member, a friend, a co-worker, perhaps even yourself. Knowledge goes a long way to assisting that person in functioning as best they can, on their good days, and their bad days. So be aware, and spread the word.
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