Top 10 Challenges of Living with a ‘Parkie’

I started thinking about what is must be like living with someone that has Parkinson’s – be it a spouse or someone’s care partner. I’m sure it’s not only stressful, but probably rather humorous at times! I know that Parkinson’s is a terrible disease, but sometimes the only way one can get through something terrible is to laugh at ourselves….

So, in today’s blog, I conferred with my wife, and came up with the top 10 challenges (or consequences, depending on how you look at it!) of having to live with a ‘Parkie‘ (i.e. me!)… See if you can relate!

#10 Having to Help Search for Something That I’ve Lost (Again)

I swear, there is a little gremlin in our house whose only job is to move anything I just put down ‘out of sight‘ so I can’t find it anymore! Because it seems that every single time I put something down, and then look for it, it’s gone! A common phrase of mine that I utter daily seems to be, “Well, such-and-such couldn’t have grown legs and walked off, could it??“

Sometimes it’s because my wife, being the good wife that she is, picks up after me and puts my stuff away where it should be in the first place. And of course, that is the LAST place I think to look! Other times… I go back and look where I had already looked, and there it is!! For me, this happens more often since I was diagnosed, so it may be just another sign of PD itself. But I still swear it’s that darn gremlin… probably in cahoots with Mr. PD just to give me a hard time!

Now where did I put that pen?? Argh! It must have grown legs and walked off!!

#9 Worrying

Worry, worry, worry… sometimes that’s all I seem to do. Worry about money, worry about this diagnosis or that problem, worry whether an asteroid is going to hit the earth tomorrow (nah, I just threw that in to see if you were paying attention!), worry about the future (a common worry among us Parkies) and so on. My wife can usually tell if something is wrong with me or if I am worrying about something – must be my facial expression. And sometimes I’ll simply be muttering to myself, and she will pick that up. “Ugh, what am I going to be like tomorrow, or ten years from now, oh woe-is-me!“

Sometimes I blame it on my genes – my Mom was a worrier – and sometimes I blame it on the disease itself. But sometimes I think it’s just me – let’s face it, having PD isn’t a walk in the park! We really do have genuine worries. But it’s then that I have to remind myself what Dale Carnegie said, “Today is the tomorrow you worried about yesterday.” Good advice, Dale!

#8 Having To Ask “Are You OK?”
Are you always asked this question whenever you drop something heavy and are ‘out of sight‘? A ‘thud‘ goes through the house and then a familiar voice yells out, “Are you OK?” This has become so common for me that whenever this happens I immediately yell out “I’m fine!!” just as whatever I’ve dropped hits the floor!
 
Now, this is especially true for me, because I not only have Parkinson’s but also something called the ‘Dreaded Dropping Disease‘, or DDD. This disease is very common and has affected me since childbirth – but recently, since my diagnosis, I have really been affected with a boatload of it… It seems like I drop everything!!
 
Now, I know my wife is simply looking out for me and making sure I am OK – and I know that is because she loves me and wants to make sure I don’t get hurt. I get that, and appreciate it more than words could say. But sometimes… well, I just want to be sarcastic and yell out, “No, I’m laying here unconscious and counting the stars that are appearing before my eyes! Give me a few minutes., and I’ll be fine… <groan>” But no… I don’t say that because… well, I think you know what would happen to me!

#7 Meal Scheduling

This is probably one of the worst ‘challenges‘ a caregiver can have with us Parkies! Those without PD don’t understand the consequence of this type of problem. You see, we Parkies can’t just ‘eat‘ whenever we want to. That is because of the Levodopa (or Sinemet) that we take. Levodopa, as you probably know, is the drug that ‘replenishes‘ the dopamine in our brain lost to PD. Levodopa competes with proteins in our meals – what that means is that if we, for instance, ate a meal composed of something like a big old turkey sandwich (with bacon – YUM!!), then take our Sinemet, the turkey and Sinemet compete with each other to get into our bloodstream. And in most cases, the turkey wins – which means no dopamine, which in turn means we turn into a pumpkin – no sorry, that’s a different story; rather we turn into a quivering, stiff, grumpy old mess!

So we have to schedule our meals around our med schedule, which can raise havoc with trying to schedule family meals! In my case, the PD has also affected my digestive system, in that it has slowed down from normal. So a meal may take twice as long for me to digest than does someone else. And that complicates the scheduling even more! “When am I going to take my Sinemet? When did I take it last? How long ago was the last time I ate? When are we eating again?? What are we eating? We’re eating WHAT? Yuk!!” Sometimes it seems to take longer to figure out and schedule a meal than it does to prepare it! “Now, where did that turkey sandwich go?? You know, I believe it grew legs and walked off!!“

#6 Endless Doctor’s Appointments

We used to go and visit my dad and his wife (bless their souls); sometimes I have to say that I kinda dreaded it… because I knew all I would hear was endless talking about their doctors, their office visits and what was wrong with them! Unfortunately, now I have almost – just almost – become my Dad; I have to be careful that when I talk it isn’t constantly about what is going on with me medically.

But what can I say? It’s a part of my life now, those doctor visits… Sometimes it seems never-ending, doesn’t it?!? You go to one doctor, then to your neurologist, then to another doctor, then back to your neurologist, and it seems to go on and on! There are times when I wake up in the night talking in my sleep, “Yes doctor, I took my Sinemet on time… Yes doctor, I’ll schedule another appointment with you next month…” Let me tell you, I’d just like to have a break – you know, maybe a full month without ANY doctor appointments!

It’s hard on us Parkies, for sure – but I know it’s hard on our care partners too. They have to determine if they need to go with us to a certain appointment, and if their schedule is open to do so. And if not, it’s juggling time – what do I move where so that I have such-and-such time free? I hear ya, and “I feel yer pain!“

#5 Blaming EVERYTHING on PD!

If you listened to me much, you’d think that all the world’s problems were caused by Parkinson’s! War, hangnails, insects, hemorrhoids, spoiled food – yep, all of that is because of Parkinson’s!!

Every time I drop something, or forget something, or grab the wrong whatever-it-is-I’m-looking for, I’ll most likely blame Parkinson’s! This is especially true when I go downstairs… and then forget what I was going down there for. Usually my wife hears me mumbling “Stupid Parkinson’s!” as I come back up the stairs…

I have to admit, though, sometimes it IS the disease. If I stumble where I had never stumbled before, or I forget something that I should have remembered, or I drop something that should be easy to hold onto…. well, maybe that IS from the effects of PD. But in my case, some of it may – just may – be plain old clumsiness! Or it’s that blasted gremlin – or one of his friends – at it again!!

#4 Mumbling and Grumbling About Your PD

Whine, moan, groan, grumble – let’s face it, sometimes that’s all I do! I bet that if I sat back and listened to myself at times, I’d think, “Wow, that guy is a cranky old dude… You sure his name isn’t Ebenezer?“

One of my biggest “grumbles” is when I have to take my Sinemet… Yes, I know it will help me… but I just HATE having to take those darn pills constantly day in and day out! You too? If that isn’t a case for grumbling, I don’t know what is!

Now it’s true that I freakin’ HATE Parkinson’s – yeah, I said it – and sometimes I almost feel like I have no choice but to grumble… after all, having Parkinson’s is NOT fun, and there are times when you feel bad and… well, grumbling comes naturally for some of us (myself included). It’s then that I have to stop, think of how much worse it could be, count my blessings, and move on. Sometimes, though, it’s a difficult thing to do.

And I know it’s hard on care partners to hear us grumbling all the time. Nobody likes being around someone who moans and groans and grumbles all day long – yet I know they put up with us because they care for us. And I’m sure they know that it’s because of the disease and that we don’t feel good at that moment. So to all the caregivers out there – THANK YOU for putting up with our grumbling and groaning!

#3 Telling Your Spouse – or Care Partner – “I’m Running An Experiment (Again)”

Every time I start a sentence with this line I cringe – cause I know it is going to elicit an eye-rolling from my wife and an exclamation of something like, “Now what??“

I usually do this when I’m trying out something different in the hopes of affecting my PD symptoms – for instance, maybe I’m attempting to modify my med intake or routine. Lately, it usually means that I’m fiddling with my DBS settings, in the hope of improving symptom relief. Sometimes it works; sometimes it doesn’t – which is why I tell my wife that I’m ‘experimenting‘ – I wouldn’t want to change my settings so much that it would affect my brain to the extent that I couldn’t even reset the DBS unit back to ‘normal‘! (Ah what the heck – I’m not normal anyway!!) But it is sometimes amusing to see her facial expression when I say that phrase… and at other times I know I am probably going to be in trouble! But don’t tell her that… Oh, what a rebel I am!!

#2 Being Reminded to Put Away Our Clothes

I don’t know… I sometimes feel I’ve become more of a …. slouch? Lazy person? Or something like that since I been diagnosed. At least I figure my wife probably thinks so. I always seem to leave my clothes laying around, or stacked up somewhere, instead of putting them away, or in the dirty clothes hamper.

I think part of it IS due to PD (there I go again, blaming Parkinson’s!) because there are, at times, periods where I simply don’t feel great – and having to bend down and pick things up off the floor (and then get back up) is not all that easy when PD has a good grip on you. I’ve heard this from a number of other folks with Parkinson’s, so I guess it’s something that only someone with Parkinson’s would understand.

But sometimes it’s just because I plain forget – so is that PD’s fault, or my own stupidity? I ask myself this all the time… Now where did I put my shirt? Hmm….

And the number 1 consequence of living with a Parkie is…:

#1 Little Yellow Pills All Over the House

Those beautiful little yellow Sinemet (Levodopa) pills – we Parkies have a love/hate relationship with them, right? We love them because it gives us that “Ahhh…..” rush when it hits our brain; but, as I’ve already mentioned, we hate having to take the darn things constantly throughout the day! And if we forget… well our bodies and brain let us know in no uncertain terms!

Which is why, at least in my case, you can find those little yellow Sinemet pills all over! On the nightstand… in my pants pocket… in my coat pocket… on the table… in the bathroom… in the car… you get the picture! Sometimes it’s because I had extra in my PillPack and I accidentally left them there (i.e. forgot); or I left them there on purpose just in case I might need my dose again at that place and time. Regardless, we can find them in the most unlikely places…. And let me tell you, if I run them through the washer in my pants pocket and the yellow color stains something, you can bet I am going to hear about it!!

Worse yet, let us go out somewhere and forget to bring them (or think we had some stashed somewhere and then find out we didn’t!) we begin to panic because we know what we’re going to feel like if we miss a dose! (at least with the DBS that has become a lessor concern) Which is again why I keep them stashed all over the place, just in case! I consider that to be because I’m cautious; others, though, might consider that it’s because I’m paranoid! So what about you? Keep those Sinemet pills stashed everywhere like me?? I know that Michael J. Fox said in his book that he does the same thing, so I guess I don’t feel so bad about it!

That’s It!

So there you go – my top 10 challenges of living with a Parkie! What about you? Are those your ten? Or do have other challenges? Let me and your fellow readers know in the comments section below.

Thanks for reading! Till next time…

Sharing thoughts on my journey with Parkinson's