Holy crap... How did I get to this place? Well it took 6 visits to my family Doctor, 2 ER trips, 1 ENT appointment, 2 Osteopath appointments, 3 appointments with the Naturopathic Doctor, 2 Bowen treatments, a battery or lab tests, 1 nerve conduction test, 1 emergency cat scan, 2 MRI's, 2 failed Island Neurologist appointments, more massages than I can count, 16 sessions of physiotherapy & three 700km trips to Saint John, NB (one to a regular neurologist & two to the movement disorder neurologist). Add to that a two page list of symptoms that have slowly been added to the initial ones, a lot of frustration, quite a bit of anger, a tremendous amount of fear and a whole lot of tears. And after all of that, here I am. Holy crap I have Parkinson's Disease!
As I sat in the waiting room today in Saint John it was the first time I waited for an important appointment that I didn't feel like I was going to throw up. I knew in my heart what was going to happen. I have spent literally so many hours it would be up to weeks of time reading, it all fit, the medication although it wears off after 2 hours worked. Today wasn't going to be a big surprise. I know what's going to happen even though it sucks, I know.
And then..... I watched the woman before me come out of his office. She only looked to be about 45, small and appeared to have taken care of herself over the years. As she turned towards me I lost sight of her and all I could see was... her cane... Yup it was like it was glowing in neon and suddenly she was lost and that's all I saw. My stomach all of a sudden felt queasy and my mind started to race with questions. Does she have PD or a different movement disorder? How old was she when she got it? How long before she needed a cane? Am I going to need a cane? When will that happen to me? Oh dear... I shook my head to free the random crazy thoughts, swallowed hard and stopped myself from being ridiculous, you don't even know that woman or her circumstances... You know how you hate when people make assumptions about your health so don't do it to this woman. My stern speech to myself seemed to work. Then it was my turn in the hot seat... He brought me to his office and we discussed what his Parkinson's nurse had discussed with me over the phone a few weeks ago. What benefits I'm getting from the Levodopa, how long it works, how long it takes to kick in the first of the day versus other doses and so on. He checked my rigidity on my hands, looked at my tremor asked a few more questions. Said he noticed an improvement from the last visit and looked at the clock realizing my meds likely just kicked in. Then the moment I was waiting for, anxious for and dreaded all at once.
"Well Natasha, there is without a doubt that you definitely do have Young Onset Parkinson's Disease. There is no disputing it at this point." I sigh, not sure if it was relief or not but I think so? He then went on to tell me about my off periods and how although it's only lasting two hours it's important that I continue to time exercise and hand writing and any of those things I usually cannot do around my meds working and do my best to deal with the "off" periods as they are called with PD. That given my age and the fact that this is a degenerative disease (yes, that's a scary shit word. Degenerative... It WILL get worse as time goes on) and that I will most likely be on these types of medication for the rest of my life or better part of it that it's too soon to try and increase or add another med. The side effects such as Dyskinesia are too real combined with it possibly not working anymore down the road from prolonged use and it's important I prolong any additional medication as long as I can. He asked if I was still exercising, I told him yes, that I'm still trying my best to run, still horseback riding on the days I can. His response "Good, keep doing it as much as you can. If you need to give up other things in order to keep working out do it. It is your only way of trying to slow the progression of Parkinson's Disease." You see, some neurological diseases such as MS that are degenerative as well have medications that can slow the progression of the disease. As of yet, there is no such treatment for PD. He advised me that recently there have been studies to show that with regular exercise the brain sometimes has the ability to create more dopamine (this is the chemical your brain no longer creates that causes PD). So for more reasons than one it is important to keep that up as much as I am able to do. There were some more talks but the long and short of it were to call if my "off" periods start to get worse or unmanageable and then they'll look at another option but hopefully I can manage as is. I am to see him again in 6 months time.
So, there it is. I made one phone call only this time. To my husband. He didn't answer. I left him a voice mail that said "well, you are officially married to a woman that has Parkinson's Disease. But it's ok, at least I finally know." Gulp. He called back of course a few minutes later in his worried tone but loving voice none the same. Asked if I was ok said to drive safely. The rest of the folks that needed to know or those that were sweet enough to send me texts and messages wishing me luck received a copy and paste of the same text with the just of what happened. To all of you that did, thank you it truly does make you feel like you're loved and cared about and not alone. I appreciate every one of them. Especially the ones I get at random times not just the day of a big appointment to simply check in to see if I'm ok & how I'm feeling. Because those are the ones that you know really care.
I did not cry this time. There was a well up in my eyes for a brief moment but it didn't last, because the feeling of relief of not being in limbo anymore and knowing I now have the power to gain more knowledge and research my options now. Something I was powerless to do before today. That is, I did not cry until I was parked to gas up and got a message from my friend Jeannie that as always said the perfect thing I needed to hear in the moment. One part of which said 'Quote of the day "Hope is faith holding out its hand in the dark" '. Among some other sweet words that made the tears flow. I'm lucky to have people like her in my life and have been blessed to have her and others put in my path along this journey to help lift me up and I am very grateful for all of those people. You help make this all easier.
As I continued home I admit I had a couple of 'moments'. I had the Why me? for a bit. After all I think I'm pretty nice, I try my best to be a good friend to those near me. I don't steal or cheat or lie, in fact often I'm too honest which can get me into trouble. I try to help others when they are in need be lending a hand in whatever way I'm able be it big or small. I try and teach my children to put others first, to be kind and try to live that by example rather than it being a speech. So why me? Why can't some jerk that's mean and nasty and cruel have Parkinson's Disease? I then had the dark moment, thankfully I didn't allow myself to go there for much more than a minute. But I literally had a flash vision of my daughters wedding and me in a corner with a walker like a big useless lump. I told myself I'm way to stubborn for that to happen and that was enough of that foolishness. I can't let my head go to that space, I won't.
Overall I am truly relieved. I don't think I could have handled anymore 'unsure' time knowing damn well what is wrong. Knowing damn well how hard little things can be for me some days. There are so many options out there for me to look into and now I can. But, of course I am NOT happy I have Parkinson's disease. What crazy person would be? And yes, I'm clean friggin' terrified in fact. I do not want my body to continue to fail me more and more as time goes on. I don't want to have to explain this to my kids. I do not want to have to live life like this. I do not want any of this. But the reality is, this is the hand that has been dealt to me. A new chapter of my life (our lives) begins today and I have to trust that God has a plan or this wouldn't have happened to me. Maybe this is suppose to be my new way to help people? Maybe I'm suppose to help other young Mom's (or Dad's) going through this? Maybe I'm suppose to continue to learn hard ass lessons about myself and my life like have come my way these last 15 months about life and love and friendship. Right now I do not know the reason and I do not know what the next chapter holds. All I know is that I have Parkinson's Disease and it sucks but I have to accept It and deal with it in order to fight it and move on.
I have three main loves in my life. My husband that God directed me to at the exact moment in life he was suppose to, I love him and I am grateful for him every day. My two beautiful girls who are my world. And let me tell you right here and right now... I will NOT turn into a puddle of jello because I will continue to be a wife and mom to them. Making fun memories and living life to the fullest! That is a promise to them! But, aside from them I have two other loves (aside from the amazing family & friends in my life). Well lets call them obsessions to be real! Ha! Red wine (yup, I'm a wine-o) and my very beautiful, very tall, very large, very colorful high heel collection. And let me tell you another thing. I will continue to run (even though I don't do it well) and I will continue to horseback ride and I will continue to stay as active as my body will permit not only because I refuse to turn into a puddle of jello but because I refuse to give up those beautiful shoes without a fight.
So tonight I say to you Parkinson's Disease... You picked the wrong chick to screw with... Because I am not or will not go down without one hell of a fight. So bring it on...
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