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.

Medications
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!

What?
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.

Progression
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!

I dislike the word 'Parkinsons' but I hate the word 'Progression'

Anyone who knows me well likely knows that I am pretty stubborn, I often like to think of it as determined though.  My husband would likely disagree! Ha! Ha!  I think that a lot of times when you hear stubborn you think of that word in a negative context, when in reality I believe it can be a very important trait.  Particularly if you're dealing with something like Parkinsons Disease.

Six months ago my movement disorder neurologist confirmed I had Dystonia in my right hand and the starts of it in my left.  Dystonia is a movement disorder that you can get on it's own or as a symptom of PD.  Essentially it is when you have sustained muscle contractions causing twisting & repetitive movements and it like PD is progressive.  At that time my levodopa was working well for about 2 hours for fine motor things and 4 for the stiffness and I take it every 5.  I was managing the "off" time by not staying still much, the more I move around the more it helps with the stiffness until my next dose and "on" time.  He at that time wanted to add a new medication called Pramipexole which he said would help level out some of the peaks and crashes and would also help with the Dystonia.  I was devastated, in fact a wrote a blog post about that visit and how I threw myself a week long pitty party & cried most of the drive home before dusting myself off and saying "Nope, I'm not ready for more drugs I'll find another way", and I went to bootcamp for 8 weeks and started acupuncture regularly.  And that's just what I did and I thought I had managed quite well with it; telling myself I didn't need anymore drugs yet I'm just too young Screw You Parkinsons cause I got this!

Well it all did work in a sense.  I always feel better the harder I work out and the Chinese style acupuncture did incredible things for my hand.  It went from pain 24/7 to only hurting when I used it, and is still like that which is incredible!  However as the weeks turned to months I started noticing changes in how my body was working.  My levodopa was starting to wear off around the 3 hour mark and when it wears off I can instantly feel it in my back.  It starts with a stiffness from the lower part moving up to my neck, I start to get the stooped posture I wake up with everyday and then the stiffness gets so bad it causes a considerable amount of pain.  I also started to notice mild tremors starting in my left hand (everything has been isolated to the right side so far).  And then there was the muscle spasms and twitching that I used to have a lot of prior to starting treatment for Parkinsons.  Now I was getting it in my left forearm, a regular twitch that caused my middle finger to pull into the center of my hand with every jump of the muscle in my forearm.  Some days it would last a few minutes other times it would annoy me for hours.  And then.... the worse came... As I was trying to get practice runs in to run the 5K in the PEI Marathon I noticed the stiffness around my ankles was quite bad and made running difficult.  At first it was just frustrating but then pain started in my feet.  Mostly in my right but also in the left and it was excruciating.  There were days I only stood if I absolutely had to and even my 7 year old was starting to ask why Mommy was limping.  However, I had the answer for this!  I had Planters Fasciitis, likely the result of years of wearing high heels.  Because after all the pain would go away if I put a pair of heels on and it felt like it was in the heel of my foot.  I thought to myself 'this sucks but I can treat that, not the end of the world'.  I booked some extra acupuncture some weekly massages and physio and it would ease the pain and have me walking without the limp but it never seemed to last more than a couple days.

And then it was time to travel my usual 4 hours each way trip to see my PD Doctor where for the first time, I had a list of things I needed to discuss with him.  He asked how I was doing and my initial response was "I think I'm getting along pretty good!"  As the conversation unfolded he was not impressed with the decrease in how long my meds work, thought it was great that my hand was improved form a pain standpoint with acupuncture but was still concerned.  Then I mentioned the slight left hand tremor on occasion, the twitching and my feet, told him my self diagnosis.  His initial response was to agree until he had me take off my shoes and started looking and feeling the fleshy part of my feet and my ankles/calves.  I quickly explained to him that it couldn't be Dystonia like my hands because my toes weren't curling but he wasn't responding.  He was still pushing on spots asking if it hurt and feeling the muscles.  He then explained to me that he was sorry and that my self diagnosis was wishful thinking on my part.  That it felt better when in heels because it was stretching out the twisted up muscles (silver lining I can still wear my heels).  That I did in fact develop Dystonia in my feet.  He went on to explain about my levodopa off periods, the pain, the twitching all means that I need to take the new medication he tried to give me last time.  That it would help with the spasms, the pain and level off my crashes.  That it was either take more levodopa so I don't go as long in my "off" periods and increase the risk of when I'll get dyskinesia or take this new pill that has no worry of that.

I was NOT happy, in fact it was the first time that in front of him I fought back tears.  The other times I remained strong in the appointment and bawled in the car.  I explained to him that I've only been on treatment for a year and a half and this just seems to fast to get this much worse and I asked him if it was too soon?  He simply said in a gentle voice "It's normal progression for Young Onset."  There's that damn word again, progression... I hate that word more than I hate the word Parkinsons.  I do everything I'm suppose to do to slow progression, everything the studies say, everything he tells me to do but yet I still get worse.  Now I know I have a neurological disease that's degenerative and progressive I'm not an idiot, I know as time goes on I'll get worse.  But I can't help but think "why so soon?"  It was explained to me that although in my mind I see it as being treated for Parkinsons for a year and a half, that in reality I've had PD much longer than that.  It was almost a year before I started treatment for it and 15 months to get officially diagnosed.  However even long before that I had PD and those dopamine producing brain cells had been dying off.  So I see it as a year and a half and all this progression when really it's likely more like years.  I was glad to have company on my drive that day as a distraction, but I admit I spent the majority of the night crying my face off.

So you see, my stubborn side said no way to his new meds last time.  I still don't think that's a bad thing, I have always said that you need to be your own health advocate.  Knowledge is power and you need to find your own way.  And one thing I love and appreciate about my Neuro is that he isn't pushy, he gives me the facts and also gives me time.  He understood my unwillingness to take it the last visit but this time was a bit more forceful, yet still not making me feel like I had no choice in the matter.  He's empathetic to the emotional struggle as well as the physical.  He very much assured me that if I just trust him this time that he feels I'll have significant improvements, that I may even be able to run again and he's confident that I'll be able to workout harder again like I had been a year ago.  He said that it will help with my apathy issues and give me some of the motivation I've lost back and that I won't be in as much pain.  All those things are good things and as frustrating as it all is I know that I have to trust him and I know that I've gotten worse and I know that I need to do this.  And if it alleviates the pain and some of the suffering I'm in now then it'll be worth the month long process of 'dosing up' that I'm in the midst of once again. 

Most of all I have to remember that if this gives me improvements it means I'm a better Mom.  I don't like it when Samantha notices my negatives changes, it stresses me out and makes my heart hurt.  I don't want Izabella wondering why Momma is walking funny or why I won't pick her up as often.  Throughout this entire journey I've always said everything I do, I do for my kids.  That I will be a present, fun Mom that makes lasting memories with them, not a lump on the couch.  So, with that said I admit that my way didn't work for very long and that although I'm stubborn I also know when to admit defeat and trust my doctor.  I think it's fine to not take their advice once or maybe twice while you try other things, research your options and whatnot.  But if you continue to get worse and ignore your doctor who's an expert on your disease then you are the kind of stubborn that is a negative.  So for now I embark on another phase of my journey and I trust his knowledge and look forward to proving him right and seeing improvements.