Oct 23, 2015

Parkinsons may change in a year, but ones determination should not!

In the run of a year with Parkinsons things are bound to change.  Everyone of course is different and progresses differently and a huge factor in how fast or slow that may be is dependant on the Parkie's decision to exercise and keep moving or not. 

Last year just a month after I had officially been diagnosed with YOPD and 6 months after first hearing that they thought this was what I was dealing with and treatment started I ran 5K in the PEI Marathon.  It was hard, but I trained as best I could and set it as a goal for myself.  It was an extremely emotional event for me and crossing the finish line (well even before) brought me to tears.

I decided to try to do it a second year.  Now don't get me wrong I realize it's 5K, it's no half or full marathon, but it sure feels like it for this body of mine.  I set out like last year to train, never intending to run the full distance until the day of because my body maxes out at 2.5 or 3K of running on a good day.  To run 5K is pushing myself past the limits and causes a considerable crash for days afterwards.  None the less I still wanted to say "Screw You Parkinsons, I can still do it!"  However, training did not go well.  It was clear to me that although I've worked very hard to stay active and slow progression things are getting more difficult.  I can't run as fast or as far.  In fact many things in my daily life I find I'm not as good at or am getting slower at accomplishing.  Admittedly small changes and I'm grateful that they are minimal I still notice the difference.  I tire a lot more easily than I did a year ago even with just day to day puttering around.  I'm closely watching for these changes because I know what it means & watching for them can be a bad thing.  It allows me to see the negatives when I really do strive to stay positive.  It's frustrating as hell and I admit sometimes gets me down in the dumps.  However, I committed to running this event again and accomplishing this goal and I wasn't about to let any of those things get in the way.  I found the stiffness around my ankles particularly tough and it was causing pain when I would try and run.  So most of my practice runs resulted in only getting about 2K with many walk breaks and ending it off with me being annoyed.  So the week of Marathon weekend I decided no more practicing.  I would save as much energy as I could and rest and take care of the pains and hope for the best that morning.

I was so grateful to have my cousin Jenny travel from a different province to come and run with me.  She was the perfect partner because she's a personal trainer, so I knew she could help me finish.  I won't run that far alone because I need someone with me to help push me to finish and make sure I'm ok too.  My dear friend Lorena who ran with me last year sporting the same custom made "Screw You Parkinsons" shirt had decided to try her very first 10K, which was much to far for me.  She still sported her same matching shirt she wore last year and she started with us and then after a couple of kilometers branched off, not before stopping to give me a hug where we exchanged some "you got this"!  It was harder than last year, but I did learn a few tricks from doing it once before and I made sure I walked the couple of hills on the route this year to save my steam.  I most definitely had more walk breaks than last year and I was slower.  However I said the day of that as long as I finished and ran at least 60% of the course I'd be happy, but that if I could finish it in 40 minute I'd be ecstatic.

Well, I finished, I did walk some but ran more and I was able to finish with my cousin by my side in a time of 38:21, so yup, I was pretty ecstatic!  My father and my two sweet girls were there to greet me at the finish line and yes there were tears.  Much to my surprise my tremors were not as bad as they were the year before although definitely present and I'll admit despite the emotions and excitement that I completed it I would be lying if I didn't say I was happy it was over!  Ha! Ha!  I could not have done it without Jenny to keep me focused and motivate me right to the end and words cannot express my gratitude for her being there for me.  I was so excited to stand at the finish line and cheer as loud as I could when I watched my bestie Lorena cross the line from her farthest run ever in 1:17:46!  I know she was (as she always is) proud of me but I was incredibly proud of her too!  Way to go girl!

My girls & Momma at the finish line!  They are why I do this stuff! 

My beautiful cousin Jenny who helped me finish!
The three of us!  So grateful for these girls! 

I can honestly say that as of this moment I doubt that running will be part of my regular activity anymore.  I'm simply finding it too hard.  However, I won't say never just yet.  Regardless of if I do it again or not I'm extremely happy that I could add a 2nd medal to my bedroom mirror to look at everyday and remind me not to give up.  After all I never thought I'd have one!  Regardless of the fact that it may be harder and I may find I'm a bit slower at things or finding them a bit tougher that does not mean I will give in, give up or lose my determination to keep trying.  I know from my 3 month break from exercise after surgery last December just how important it is.  I know the studies are correct when they say it can slow progression and make your body work better because I stopped and I found out just how uncooperative my body was during that time.  So no matter what type of activity I do I will do something and I will stay as busy and as active as I can for as long as possible. 

So for all my fellow Parkie friends out there set yourself a goal and achieve it!  It doesn't matter what it is perhaps it is simply to commit to going for a walk three times a week, just do it!  Try it for a month and see how much better you feel emotionally and how much better your body works.  Find something that suits your abilities and just get off your butt and keep moving! 
 Link to an interview done prior to the PEI Marathon about my journey with PD, exercise and running:

Oct 5, 2015

Parenting with Parkinsons

I've had a lot of people touch base with me who have YOPD and small children.  It's great to be able to share struggles and help find solutions to the world of Parenting with Parkinsons together.  Having a degenerative disease that affects not only yourself but the entire family can be a tough pill to swallow when it comes to parenting.  Trust me, I know it's hard!  Parenting in fact is one of the best, yet toughest jobs anyone will ever have in their life and parenting with Parkinsons can be extremely difficult and makes it that much more challenging.

Everyone has their own way of dealing with it.  I know some parents who have done their very best to hide the fact they even have PD from their children.  A wait it out method of wanting them to be older when they are told so they can understand the scenario better.  I know others who very much involve their children in their journey and use it as a life lesson to encourage their kids to participate in fundraising initiatives for the cause.  There are various other scenarios as well and the fact of the matter is that nobody knows their own child (or children) better then them.  So I do not think there is a right or a wrong way to go about parenting with Parkinsons.  You simply have to find what works for you and your family.  That being said, in my own experience I've come up with a list of suggestions of what I feel are important while parenting with this disease, but again not everyone's situation is the same.  Take it as some 'food for thought'.

1.  Don't keep your children in the dark. 
You clearly notice the symptoms of your Parkinsons hence ever going to a doctor to begin with to end up with a diagnosis.  Don't assume your children don't see your issues.  They are smart, VERY smart.  In fact I think children are much more perceptive than adults are and often very quickly sense when things are wrong.  So imagine them noticing some of your 'issues' despite your best efforts to hide them and what goes through their little minds of wonder.  Be honest with them, find age appropriate words to try and explain to them that you have Parkinsons and what that means so you can try to alleviate any fear they may have.

2.  Stay engaged with your kids.
This is so important.  Think back to what kind of a parent you were before you had PD or before your symptoms started to arise.  What kind of Mom or Dad were you then?  Were you the parent who got down on the floor and played with your kids, or always took them to the park, or played catch with them all the time, or never missed a soccer game?  Then keep doing it!  Don't get me wrong, there are things I used to do for my kids like building luge tracks in the backyard from the pile of snowplow snow in the winter that I no longer can do.  BUT, that does not mean I can't do other fun things in the snow with them instead.  Last winter we did snow art with food coloring instead, they loved it and we still had our playtime in a form that was much more manageable for Mom. 
Put yourself in your child's shoes, if you were always with them, playing with them and engaged with them before PD imagine how they feel if suddenly you're always on the couch and pawning them off on their other parent with little interest or ability to still have fun with them?  Your child may know you have PD and understand to some extent what that means, but a child's mind doesn't rationalize the way ours do.  The last thing any parent would ever want for their child is to have them think that Mom or Dad doesn't love them anymore.  The reality of going from an engaged parent to a lump on the couch is that they may very well feel like they are no longer important to you...

3.  Make NON Parkinsons memories with them.
I am a big believer in my girls knowing that Mom has PD and being involved in fundraising for it and raising awareness about the disease.  I think there are valuable life lessons in these initiatives and having your kids take part.  However, you do not want the only time you spend fully engaged with them centering around the fact that you have the disease.  Make fun memories with them on your good days.  Of course there are going to be days that PD takes control and you're struggling and that's not the time to choose to go on a nature hike with them.  However on the better days take them to the beach or the amusement park or the zoo, have a family game night.  Whatever it is that you know will be fun and exciting for them.  It doesn't need to be something that costs money, children want our TIME, attention and love.  Think back to what some of your favorite childhood memories were?  Chances are they were simple pleasures like a road trip or baking with your Grandma or going to a farm to see the animals.  Whatever you do, do not let your kids grow up when the only memories they have of you are ones of you crashed on the couch or locked in your bedroom.  Not to mention there are studies out now that prove that puttering around and staying busy can actually help PD symptoms.  So get on the move with your kids, play with them and make memories and enjoy their cuddles and laughter.

4.  Don't let the guilt take control.
On those days you just don't have it in you to 'play' or be on the go with the kids, don't beat yourself up.  I often will have a crash day where I'm not the most fun Mom in the world.  It sucks and it makes me feel guilty.  However on those days I try and focus on the fact that I really do try my best to be engaged and an active part of their lives and memory banks.  So, explain to them that you're not feeling the greatest today and that you're sorry but you just don't feel like going to the park.  That you need a bit of a down time or a rest day and you promise you'll do something fun with them later in the week.  (Don't promise tomorrow, because we all know sometimes a bad day can be multiple bad days).  Be realistic with your activities, promises and abilities.  Do not let guilt take control of your parenting methods and let them become holy terrors and get away with murder because you feel guilty.  That won't help them or you in the long run.  So instead be honest and try and give yourself a break, being too hard on yourself won't make anything better.

5.  Do not let your spouse become a single parent.
Rely on your other half as you need to.  When you just can't get to that hockey game because you know you can't handle the cold that day or you're just exhausted, send your spouse instead.  That's perfectly ok.  However, do not rely on them to the point where they are the only engaged parent in your kids lives.  Co-parent in the ways that you're able to and make necessary adjustments but do not stop being a Mom or a Dad.  I often say "I am a MOM first, Parkinsons comes second" and I try my best to live by that.  If you give up parenting because you're depressed, which is a common PD symptom or because you don't think you "can" do those things anymore you are only going to cause resentment in your relationship.  The last thing you want to do is make someone you love feel hurt or resent you for not at least making the effort to chip in, even if it's not the same ways you once did.  My husband works in a different province, this can be very hard sometimes particularly on the bad days.  However, I think it's also beneficial for me as a Mom, because I do not have the choice of relying on him to do everything for the kids or around the house.  I appreciate him when he is home for everything he does do to give me a break.  So don't expect them to do it, be appreciative for what they do, but always chip in!

The reality of life is that sometimes things just don't go the way we planned them or expected them to.  I can say with certainty that no one with PD ever thought they would live a life trying to manage the disease.  Most definitely no parent out there thought or had hopes and dreams of being a parent with Parkinsons.  However, that's what has happened for many of us.  We cannot change that, but we can change the way we deal with it moving forward.  You can still be a great Mom or Dad, a loving wife or husband and a caring friend to those you love.  Your children look up to you, love you unconditionally and simply want you to love and be there for them.  Do not let Parkinsons take that away from them, nor the joy it will give you to be their parent!  Parenthood is a gift, one that some people long for, so don't take it for granted.  Parkinsons has already taken enough from you, don't let it take away the greatest job in the world too....

I am a MOM first, Parkinsons comes second... and it always will! 

Have fun with them!  Even if it means just watching them play in the snow in the winter, or taking them for an ice cream in the summer!  Sometimes the little things are all that matter!
An article I was interviewed for recently about Parenting & Parkinsons:
Previous post.... "Guilt is to Motherhood as Grapes are to Wine"