For me, this is no different in life or with living with Parkinsons Disease. The reality is your logical mind is well aware of the fact that you have a progressive neurological disease. Parkies are well aware of the limitations we have with our bodies because of the movement disorder. We are reminded daily of those struggles during our "off" periods when our meds aren't working so great and take comfort in the hours of the day we are "on". Because every Parkie is different we may all struggle with different variations of the disease being the worst parts, but we all can understand that the struggles can be tough. As mentioned many times before my main issues are stiffness which gets so severe when meds are not working that it's painful. Stooped posture, struggles with fine motor skills also top the list. Some Parkie's main issue are the tremors which make it difficult to perform simple tasks like pouring some tea. Thankfully my tremors are well controlled and usually almost non existent, but when they are present they are frustrating to say the least.
Now all that being said I believe I accept the fact that despite my young age and waking up feeling 90 years old everyday overall I'm quite positive about my situation and life. I try and focus on the blessings I have and stay focused on what I need to do to keep my body working well. I most definitely have my moments of frustration and even anger but I look for the joy despite it. I hate taking pills and still do the 'eye roll' everytime my medication alarms go off on my phone but at the same time I am grateful to have those pills because without them I am unable to move with ease and am in agony in various ways. So overall I am content with my life, take it in stride and remain optimistic for a long enjoyable life. So why is it if the overall picture of having Parkinsons and the issues it causes for movement and the fear of the unknown as time goes on can be accepted; is it that the little things that go with the disease are the ones that knock you down and have you feeling depressed?
I find myself as time goes on upset and down about the small stuff. For instance the non motor symptoms of the disease like loss of sense of smell. This is often one of the first signs of the disease and one that I noticed years ago. Overall, sometimes not being able to smell might be a good thing, right? Especially if the entire family had beans for supper the night before! Ha! However as time goes on and the sense is diminishing more and more I now notice I'm losing my taste as well. Oddly enough a fellow Parkie & I were just talking about this earlier in the week and he told me he no longer has a sense of smell or taste for anything. This made me sad for him, because I love food and the thought of not being able to taste it sounds horrible. But the reality of it is I've started to experience this already but have been ignoring it. I have been unable to cook spicy foods for anyone other than myself as I'm not a recipe user and it's often too hot for anyone else to eat. But to me I can't tell that it's as spicy as another says it is. The kicker on this one was when I made chilli the other night for myself. I had some, it was delicious (or so I thought). My lips were burning so I knew it was spicy but I had no sensation of it being hot at all as I consumed it. Several hours later when I was literally rolling around on my deck in -15 degree temperatures in the snow, sweating profusely and in so much pain I was actually considering calling an ambulance I realized.... I can't taste.... it was the chilli.... I AM losing my sense of taste in addition to my sense of smell.... I love cooking, I love experimenting in the kitchen, I love flavours and spices, I love food... I love how it tastes... I do not want Parkinsons to take that away from me......
So, what happens when I hit a moment like that? Well oddly enough in the grand scheme of things and all the issues that come with PD losing smell and taste are really small stuff and not worth sweating over. However, my mind turns elsewhere and the pitty party starts. I start to think about how unfair Parkinsons is. That as if it's not bad enough to have the disease and the motor issues that go with it and the realization that those things ARE going to get worse, why is it I also need to have all the other things as well? Why do I have to be the one with PD who also gets Dystonia (another movement disorder you can get on it's own or from having PD) in my hands and feet & legs? Why do I also have to have a bladder condition that I need monthly treatments for? Why do I have to have my speech changed and softened so that I have to focus when speaking to people to make sure I'm loud enough for them to hear? Why do I have to have insomnia so severe that sometimes I feel like a walking zombie? Why are my beloved high heels getting lower when I'm in love with them & was meant to be 5'9" not 5'4"? Why do I have to have anxiety & social awkwardness when I used to be a social butterfly? It's not fair that PD gets to change my personality too.... Why do I have to lose my sense of smell and possibly my sense of taste too? Why? Why? Why? Isn't the motor issues of Parkinsons bad enough????
Yup, that's where my mind travels in those "small stuff" moments. That's the way I "sweat" and frankly it's a bit stupid because there are much worse things about this disease that I should be sweating about. But yet overall I remain positive about it all, until these small moments hit and I get angry and frustrated and sad. I rarely write a Debbie Downer type of post and that's not the intention here because I do continue to find the joy and I will continue to have my positive attitude and use my slogan "Screw You Parkinsons" cause you picked the wrong chick to mess with. I still will fight and will focus on living well with PD, however I think it's also important to be real about the things that can be depressing, to acknowledge the fact that even the positive person can have moments like this. I have no doubt that many of my fellow Parkies that read this blog have had experiences just like these moments. Times where you have been sweating the small stuff and that is why I write this, because we are not alone in these feelings. Sometimes we cannot turn the heat down, it's out of our control. So lets just resign to the fact that we are allowed to be pissed off once in a while, provided we don't let it consume us. Let's get our sweat on, get angry, throw a hissy fit and then dust ourselves off and move on. Then perhaps hop on the treadmill and get our sweat on in a positive way that will make our bodies work better!
Sometimes we just need a good hissy fit to get the hell over it and move on to positivity again! I'm happy to say mine lasted about 24 hours but now I'm over it... Screw You Parkinsons!
