I've yet again had to experience progression, that dreaded word that those of us with the unwanted gift of the progressive neurological disease of Parkinson's receive and in my case Dystonia's progression as well. To the outside view looking in on my life, watching my movements when I'm out and about, life with PD likely doesn't look much different to them. My tremors are still usually non existent to the untrained eye, I'm still sporting my high heels (which I will never give up tremendous fight), I'm still 'on the go'. I'm still horseback riding for therapy once a week, I've taken up playing the fiddle and started playing guitar again after 20 years. I'm busy with my kids, coping well with a husband on the opposite end of the country where he works. I'm doing very well for a person with Parkinson's Disease. And this is all great and I count my blessings for all of that. However what the untrained eye doesn't see is the internal tremors, the ones nobody sees but I can literally feel my body vibrating from the inside out almost always. The untrained eye likely doesn't notice the rare times I do have significant tremors but keep my hands in my pockets or keep moving/walking so while still they aren't as noticeable. The untrained eye doesn't notice me wince with pain from Dystonia that's plagued my muscles in my arms, hands, calves & feet when I try and exercise or do certain things. The untrained eye does not see my morning shuffle when I first make my attempt to get out of bed (sadly usually at 2, 3 or 4 am most days). The untrained eye doesn't see me cry on the inside when the stiffness gets so bad it's painful. The untrained eye doesn't see the struggle & torment I sometimes experience emotionally while walking this journey with YOPD. The untrained eye doesn't see my eye roll of frustration every time the medication alarm goes off on my phone to take any of my three prescriptions 8 times a day totaling 18 pills daily in order to enable me to have said untrained eye not see any of the struggles.
Now that all didn't sound very Christmassy and joyful did it? However perspective is important. Although I struggle with too many pills going down the hatch and all the things noted, there are such important lessons and joy in all of it. I hate the pills but I am so grateful for them too, they are a gift, another one I wish I never wanted/needed but a gift none the less. (See an old post about the unwanted gifts of PD http://natashachronicles.blogspot.ca/2015/05/if-parkinsons-is-gift-that-keeps-giving.html) If it weren't for all those medications the view looking in would be quite sad likely, full of pity even. It would be easier to see what Parkinson's is really like, how horrible it can be as you would watch me struggle to pick my feet up off the floor to move forward or saw me hunched over like a 90 year old, or worse saw me unable to walk unassisted, if you saw me barely able to feed myself because the tremors were so bad and so on. Because the reality is, that would be my life without the medications. So when thought of in that respect what a glorious gift it is! I shall try and remember that comment the next time I am rolling my eyes at a med alarm! There's also lessons in being strong even when you don't feel like it among all that. I may have fear and frustrations but I don't want my children to grow up that way, so it teaches me and they remind me daily to keep going and focus on the joy in the day rather than the struggles. It's all taught me to focus on blessings and try and let go of things that we shouldn't hold on to. I suppose in a sense although not a death sentence like some diseases can be it teaches you to try and live life to the fullest, experience things that you might put off til another day but you don't as much now because you aren't sure you could do it as time goes on. It teaches you to not wait for certain things, to be present in the moment more.
I'm a very lucky woman, I have an amazing husband that puts up with my torment and my stubborn ways and loves me despite anything negative, loves me even with Parkinson's and an unknown future. I have two beautiful girls that are smart, funny, caring and keep me going. I have an almost one year old miniature dachshund named Xena that I've always wanted & keeps me company when my husband is away at work and my girls are both at school as now that I can't work that can be rather lonely. I have a roof over my head, people that care about me and there's so much joy in all of that. It makes my heart hurt a little for the friends I have with Parkinson's who aren't as blessed, who don't have all that to keep them going and keep them feeling uplifted on the days where we want to give up. And trust me no matter how positive I or any of us struggling with Parkinson's or anything else for that matter is, we all have our days where we just don't think we can go on and keep fighting. A Parkie friend of mine said to me just this week while having one of those days "sometimes you just need to have a cry and vent to someone who gets it. Because you just can't always do that with your family or close friends because then they worry too much. They think you're losing it or can't cope anymore." And this is so very true, I can assure you that if you have a loved one with PD chances are they fake it well for you, a lot. So just because they don't complain a lot or seem down be mindful of that, don't take their positivity for granted. Take time to pick up the phone and call just for a chat, just so they know you are still there for them. Take notice of their changes socially, emotionally and physically and talk to them about it I guarantee you they'll appreciate it.
I shall end with this... We are all lucky, we only have one shot at this life on earth and regardless of if you have Parkinson's disease or what the journey has thrown your way it can be a beautiful joyous life. As Christmas comes tomorrow focus on your blessings, seek the joy you had in the year and look hard enough to realize there was much more of it then there was bad days. As you laugh and enjoy time with loved ones, remember that not everyone is so fortunate. Some are struggling at Christmas especially with loneliness, pain, loss of loved ones etc... Reach out to anyone you know that might be in that place, make sure they know you care and be grateful for all you have to smile about. There is a lot in this life that is out of our control, but the one thing you can control always is your attitude, what you focus the majority of your energy on and how you treat others. Be kind to one another as Ellen says, and in that be kind to yourself too. We are often far too hard on ourselves. Because remember there IS Joy in each and everyday, even the ones that are rotten and make us feel like we are losing the battle. It is there, if you look hard enough for it on those days you will find it, even if it's a tiny piece of joy. And on the good days fill up your bank with as much joy as you can, store and put it in a gift box to hold onto for the days where you may need a little extra.
To my Parkie friends around the globe this Christmas and as we approach 2017. I wish you happiness, courage, new treatment options, medications that work so that those 'untrained eyes' around us see how well you're doing, strength and most importantly I wish you much joy. I hope despite any struggles this year has presented you with you can find the lessons in it and move onto 2017 with a fighting, winning attitude. I wish you health and happiness always and most importantly I say to you, YOU are not alone... We Parkies stick together, it is a community like no other, it's a beautiful gift which I am grateful for this Christmas and each day. And I say a very sincere Thank you to those of you I've come to know because of this journey, you are a blessing to me and I thank each one of you who have reached out to me and have given me strength and a person to vent or cry to on the days where I needed it from someone who understands. To the loved ones in my life, family & friends thank you for your support, love, encouragement and for being there for me even when I can be difficult. Thank you for your offers of help even though I need to work on being better at accepting them. Thank you for the love.
From my family in tiny little Prince Edward Island on the east coast of Canada to yours where ever you may be in the world... Merry Christmas & Happy New Year!
Merry Christmas 6 stringer !
ReplyDelete