Nov 14, 2015

My Top Ten Parkie Pet Peeves!

There are things about Parkinsons Disease that are just super frustrating to those of us that have it.  And then there are the things you hear about Parkinsons that are also annoying.  So I've compiled a list of my Parkie Pet Peeves.  Now before you read on, let me give a bit of a disclaimer and be clear these are MY pet peeves, everyone with PD is different (we're like snowflakes remember) so not everyone may have the same frustrations and some of the things on the list may not be bothersome to others.

How are you feeling/doing?
Now this isn't a bad question by any means, the reason it makes the pet peeve list is because of when it's asked with the 'sad, I pitty you' face.  I personally don't like to be felt 'sorry for' although I understand the concern is genuine and I am appreciative of that.  But the next time you ask, ask with a smile! 

The caregiver term when in reference to a spouse.
Now this I know does not bother some people.  However for me it makes my blood boil.  If my husband ever were to introduce himself to someone as my 'caregiver' I would be mortified.  Because to me that would be like him saying "this is my patient, the person I have to look after because she's not capable of taking care of herself".  I watched a program on CBC not long ago called Keeping Canada Alive about health issues and hospitals/services etc...  There was a husband & wife on the show and he had Alzheimers Disease.  During the interview his wife said "They keep calling me his caregiver, but I'm not his caregiver I'm his wife.  And I'm just doing what any wife would do for their husband because I love him."  That moment touched me and I was grateful to hear her explanation of why she is NOT her husbands caregiver.  I'm lucky, my husband feels the same way and he always simply says "in sickness and in health".  Now don't get me wrong there will come a time I'm sure when I'll need his help with things, but I would hope when that time comes he'll help me because he loves me, not because he is caring for a patient that happens to live in his home.

You look great and don't look sick at all!
Why thank you, because I'm not 'sick'.  I have Parkinsons Disease and that doesn't mean that I plan on spending all my days in sweats looking like a bag of crap.  I struggle with a lot of things but I do make an effort to be 'presentable' when I'm out and about, unless you see me right after I've been to the gym or run into me on a particularly bad day where it was a real struggle to get out of the house.  And if you see me on such day then I had no choice but to go out for something.  A compliment can make anyone feel better and it's very sweet, but perhaps leave the 'you don't look sick' part out.

I hate pills, but I need them to survive.  This is why I struggle so much when I'm told I need to add a new medication and it takes me 6 months to accept that and take it.  I'm stubborn, I need to figure these things out differently then some.  Being 38 years old and needing to set alarms every couple hours on my phone to remember to take my 2 types of medication at various times in the day just so I can move around properly sucks.  Needing a pill to kick in over the course of an hour in order to simply get out of bed & walk through the house, that warrants the pet peeve list!

You'd never know you had Parkinsons with how busy you are!
Hmmm... so again, should I stay home in sweats everyday feeling sorry for myself because I have PD and I can no longer work, which is very upsetting for me by the way.  Should my two children suffer and be stuck at home all the time cause Mom has PD?  Nope!  I won't let it go down that way.  Yes, I am busy, I'm a Mom of a 7 and a 4 year old and my husband works on the opposite side of the country.  I am busy helping with community events and charitable work because those things are important to me and they make me feel like I'm still a contributing member of society despite the depression that comes with not being able to go to work everyday anymore.  They are things I strategically plan around medication doses and when I'm "on" & space out over the course of enough time to do.  Not to mention the more on the go and 'busy' I am the better I feel.  Yes, it's exhausting and insomnia and exhaustion are two things that go hand in hand with PD, but my body works better the more I'm up and moving and being busy is actually healthy for me.  Trust me I have my days where I stay in my pj's all day long and I'm fried, but overall I try and keep busy for both my body and my mind.

Oh crap, I forgot!
I have an app on my phone that has my entire life and families schedule in it.  I also have a 2nd calendar on the fridge with it duplicated.  My phone is constantly "dinging" with a reminder of something I need to do, a place I need to be, a medication to take, you name it.  Remembering to do anything is not my forte anymore and needing to have multiple measures in place to not forget is a big pet peeve, but thank heavens for the technology of today's world!

I'm very conscious of the fact that my voice has gotten softer and I tend to mumble.  Therefore when I'm out in public or with someone else I actually focus on speaking loudly and clearly when in those situations.  I now don't just talk to someone naturally but yet I have to think about how to talk to someone.  When I'm at home with the kids or hubby I'm constantly hearing "what?" "Natasha, I didn't hear you, you're mumbling!".  Thankfully it's nothing severe but it's definitely a pet peeve when things that should come naturally need extra focus and to be thought about when doing so.

Procrastination is the art of keeping up with yesterday.
Oh the joys of not having the motivation to get a project completed especially around the house.  Or the constant rushing to complete something because you're just about out of time, despite the fact you knew you should do it two weeks earlier.  Apathy is a common issue for people with Parkinsons, and although when it comes to things that are extremely important to me I always complete the task, but in general everyday life there's a lot of times I just let things slide cause I can't be bothered.  So not naturally my personality and dealing with changes in who you are and how you act is definitely pet peeve worthy.

Like I said in my previous post, I hate the word progression.  But it's much worse to 'feel' it than hear the word.  I work really hard to take care of myself to the best of my ability.  Exercise regularly and as hard as my body will permit, regularly participate in alternative therapies and all the things the Doctor and research says I should do to improve my quality of life and slow progression.  However, despite all those efforts it's still going to get worse.  I have no doubt it gets worse at a much slower pace than if I sat around like a lump and did nothing, but I still do and continue to progress.  I know when people see me they wouldn't know I had PD most of the time if I wasn't public about it.  However those individuals don't spend 24 hours with me.  They don't see the times where my meds are not working well or worn off.  They don't see me first thing in the morning.  They don't notice the things only I could, like how my tremor & other issues are starting to move to the left side.  They don't feel the pain I experience day in and day out when meds wear off because even when that happens I still have a smile on my face if I'm out and about.  They don't know what it's like to sit in your Doctors office and be told you are getting worse and that it's 'normal progression'.  They don't get how scary that word is and how very much it sucks.  Progression by far is near the top of the list on my Parkie Pet Peeves but there's no way of getting rid of this one.

They lost their battle to Parkinsons
OK, this one right here is the big winner.  I hear and see comments quite often where someone will say "my Dad lost his battle to Parkinsons last year".  Let me be VERY clear on this.  You DO NOT DIE from Parkinsons.  Yes it's a Degenrative Disease that gets worse over time, but it is NOT fatal and thank heavens for that!  Yes there are people that are elderly and have PD that may have health issues complicated by PD and that certainly can add to any factors in their passing but you do not die from PD specifically.  That being said a person with Parkinsons such as myself should NOT be allowed to be denied of life insurance, but yet I am now officially uninsurable for the rest of my life and I plan on the rest of my life being a very long one yet.  Definitely my biggest pet peeve of the list!

All the above pet peeves aside I'm still a very lucky woman.  I have a husband who is incredible, loving and very supportive that I know will be there for me as time goes on no matter what.  And that I know will NEVER introduce himself as my care giver (cause I may hurt him Ha! Ha!).  I have two beautiful children that keep me busy and active and that's what helps keep me in better working condition.  I have wonderful friends and supporters that make me feel loved and cared about and that I know will be there if I need help.  I am young, I'm still very new into this journey of PD despite the fact I've had some progression already, but I'm thankful that it's slow.  I'm hopeful for new treatment options that are on the horizon, hopeful that someday there'll be medications to help slow the progression like those that exist for some other Neurological Diseases.  And of course I am hopeful for a cure someday for all of us that pray for one. 

Take my Pet peeves with a grain of salt, for the most part I try and laugh it all off, or sometime I 'shake it off'.  I know that most of these things are out of my control and could always be worse, I'm still extremely fortunate and blessed.  And all the things I hear are meant with well intentions and for that I say thank you!