It hasn't even been a full week of trying to process things and I'm sure there's a long road ahead yet, but I think overall I'm accepting it fairly well. After all it wasn't a huge surprise to me and I had months to get used to the idea. However, that being said I must admit that I am finding it ALOT different to say the words "I have Parkinson's Disease" as opposed to saying I'm being treated for PD. Not much of a change in that phrase although the two seem to be worlds apart at the same time. I think however the most difficult part of processing all this is the realization that although I do have hopefully some control over not getting worse too fast I have no control over getting any better. I had held onto hope that despite that appointment likely leading to this being official that there would be an alternate course of treatment that would further improve upon my ability to complete fine motor related tasks and settle the tremors for more than a 2 hour period. I am so much better than I was before starting on Levodopa the end of May. I'm extremely grateful for the fact that I can indeed time doing exercise around my dose kicking in, or time using a pair of scissors or doing a little craft or whatever have you with my kids. Afterall 4 months ago those things were almost impossible all of the time. Now I at least have a window of opportunity and I have joy in those windows albeit brief. However, finding out that I should indeed find joy in those approximate 2 hour periods and continue to do my best to time things appropriately and manage the "off times" as best as possible for an indefinite amount of time was a blow. I was expecting (although in the back of my mind always hoping otherwise) my PD diagnosis, I was not at all expecting that I would remain in a standstill. That thought had honestly never crossed my mind. Of course I had read in my countless hours of research about how often young onset patients will choose to delay any form of treatment at all, in order to ensure it will be effective down the road when it will be much more necessary. Clearly I was not at liberty to do that, however being told I should not change medications around or increase anything as it could alter it's effectiveness later when things do get worse. Sadly that is the reality, I can exercise as best my body will allow and hopefully maintain where I am for as long as possible or at least not get worse faster than need be; but it will get worse. So accepting the fact that bad days aside where I'm often useless that even on good days I will be most likely unable to work. That my ability to perform many tasks most people take for granted is approximately 6 hours a day, broken into three parts. Sometime in the vicinity of 8am-10am, 1230-2:30 & again from 5:30-7:30 give or take. On a really good day I may get more than that, but that would be the average on a 'normal' day. Don't get me wrong, I did not have those 6 hours before and I am very grateful for them. But I am also extremely angry that it's the best it's going to be. How can I expect any employer even the best one to work around those hours. Essentially able to work 4 hours a day with a 2-3 hour break in between? So the thoughts of returning to my career without any advances in research/treatment options seems an unattainable goal at the moment and I am angry about that.
THAT was the one thing I was still holding onto hope for. After all I left PEI at 17 years old to get an education and build a career. One I think I was very successful at for a young age, one I was very proud of and enjoyed. Not to mention the fact that I love being a Mom but having a husband that works on the opposite end of the country meant that going to work was not only often my only social interaction but my only break as well. Not being able to work is depressing to me and has been for quite some time now. Knowing I likely may not be able to go back to work at all (or at least in the foreseeable future) feels oddly like a loss in identity. I understand I have bigger fish to fry right now, being a good mother to my girls and taking care of myself so I can continue to be that for many many years is much more important, but that doesn't necessarily make the loss any easier. It doesn't ease the sense that I am yet again mourning another loss that PD has taken from me. But, the reality of it is I need to change my way of thinking. Because who knows what the future holds as far as options. One strange realization in the last week for our family has been to change our pre programed way of thinking of the future to focusing on the present. We spend a lot of time planning out our futures and what we'll do next year, or when our kids are older, or when our children leave the home or when we retire. Suddenly those thoughts aren't dream worthy anymore in fact they can be down right scary. So whether it be about work, or whatever have you the mindset must change to simply being joyful and grateful for what blessings we have today and not thinking too far ahead.
On a side note I must take a moment to say thank you to the countless messages I've received. Messages that were so very heartfelt and loving and full of beautiful words of encouragement. In the moments of negativity they truly do come to mind and give me strength and lift me up. It's incredible what a simple cluster of words can do for a person during a struggle. I've also been asked a lot of questions in the past week and I do not mind being asked at all. One piece of advice I'd like to give is to never assume anything about anyone's situation whether it be health related or otherwise. If you think you know, trust me you don't. If you read one article about an illness or disease do not assume you know what you're talking about. Because it's guaranteed that whether it's someone suffering with PD, diabetes, cancer, chronic pain from an injury, or countless other conditions they or the caregivers of those have done countless hours of research and even they are likely not yet an expert. So although you may be well meaning, don't act like you understand or know what is out there. Don't get me wrong, educating yourself on such conditions is appreciated by those affected it's a simple process of asking a question instead of coming across like you know what they are going through. Changing the way you say something can be a big difference. Ask questions, it makes people feel as though you are engaged, that you truly care and are there as a support system for them. Saying nothing because one is uncomfortable happens, but acknowledging things can make a big difference for the person going through it, or at least in my experience. To everyone who wants to ask me a question, go for it... But I warn you don't ask if you don't really want the answer! Because for anyone that knows me well, knows that I'm not one to sugar coat things I'm a say it like it is kinda gal! ;-)
One question I've been asked a lot is what is the difference between Parkinson's Disease and Young Onset Parkinson's? Well, actually nothing. It's still Parkinson's regardless. Parkinson's disease in simple terms is a degenerative neurological condition where the cells of the brain that produce dopamine die. It is unknown why this happens but the loss of dopamine is what causes the symptoms of PD and as of yet there is no cure. Some of the early signs are tremor or shaking, small handwriting, loss of or decrease in sense of smell, trouble sleeping, trouble moving or walking, constipation, masked face (loss of expression), dizziness or fainting, stooping or hunching over. I have 9 out of 10 of these early symptoms. There are MANY others as well such as loss of arm swing, muscle rigidity and stiffness etc... which I've experienced, some of which I have had for nearly 10 years. I am at a point where on a reasonably normal day for me I can still 'hide' my symptoms. For example if I tense up my muscles I can often force the tremor to stop, although I pay for it later so it's usually not worth it. As for Young versus not, it simply means diagnosed young. That is all. Parkinson's is typically a disease seen in people over 60 and often more noticeable in those people as they may have other health concerns already that make the symptoms worse; where as a younger person to get it is often more physically active and has no other previous health issues and therefore it doesn't appear as severe. Only about 10% of PD diagnoses are under the age of 50. I would be this unlucky rare 10%. I always did need to be unique, go figure!
I've also been asked if I'm scared. Well of course I am, but like I said earlier I need to change my mindset and think of the joy in the present and not think to far ahead. That will help alleviate constant feelings of fear. I've been asked how I'm coping and how I am mentally with all of this. Well I think I've pretty much summed that up above. I've never been a secretive person, always been an open book kind of individual. I don't think there's anything wrong with either type of personality this is just mine. I don't feel the need to hide or alter the truth and that is part of why I started writing this blog. This way there is no need for rumors and assumptions because I am simply telling it the way it is. I have good days and bad days. I have days where some simple things that should be easy enough for a child to do will make me cry with fear and frustration. I have days where I'm extra stubborn in compared to usual where my only attitude is 'I'm fine, screw you Parkinsons'. I have days where I feel like a bag of crap and I'm angry and miserable because of it. But more importantly I have a lot of days where I think my attitude is upbeat and I feel determined and strong enough to face the challenges and I find the joy in the little things. Thankfully I think I am in that joyous space in my head more often than the others. And on the days that I am not in that space I am grateful for those people around me that lift me up, encourage me and give me the push and the strength I need to get over it. Some of those individuals have unexpectedly come into my life since this journey began, some are old friends I've had forever, some are new friends made recently, some are the people I would have always expected to be there for me as I would them and some that I did expect haven't been. But regardless it is all part of the journey, all part of the process, all part of finding my new way in my life that had a very unexpected curve ball thrown into it.
And through all this sometimes sad but often joyous roller coaster ride I hope that a day will come where I can say that Parkinson's has infact made me a better person, a better wife, a better mother and a better human being. Until that day I will just keep swimming!
