Have you ever tried to open up one of those ‘child-proof‘ bottles? Child proof – HA! They should call those ‘Adult Proof‘. You twist and turn and try all kind of contortions with that thing and it still stays closed! The most aggravating part is when I simply give up and pass it over to someone else – and they seemingly open it immediately!! ARGH! And then the look they give you, like ‘Hmm… that was easy, what’s your problem?” makes me want to… well, let’s be glad that strangulation is a crime, right??

Even worse – those brand new items you buy that you want to try out as soon as you get home – but they are encased in this plastic that only a nuclear blast could separate… You try at first to just cut open a small section of the plastic – maybe it will pull apart after that? Yeah, right – twenty minutes later, after completely shredding all the encasing plastic, you finally get access to your item… Yet by that time you’re so aggravated and tired you really could care less to try out your prize! Where’s my rocker?? Sheesh!

Well, as I go farther along with this wonderful (sarcasm intended) companion called “Parkinson’s Disease” it seems that almost everything I do now seems harder than it was before… And I don’t just mean the ‘hard‘ things, but even the easy things seem harder now. I realize this is to be expected as PD advances, but it can be pretty aggravating!

Basically, just about ANYTHING using my extremities (hands, feet) is a LOT harder than it used to be – even harder than just a year ago! Take, for instance, simply tying my shoes – first, those crazy round shoelaces seem like they were made specifically to aggravate all us Parkies! My fingers just don’t seem to want to work right, leaving me usually trying multiple times to tie those things tight enough so that they don’t come undone right when I’m going down the escalator in the mall!

Exercise is another thing that seems harder now. I’ve always been a proponent of exercise, especially for us Parkies. And I’ve been pretty avid about doing it regularly. But now it just seems harder to maintain a regular schedule of exercise – especially when the dystonia comes back in your foot right when you’re trying to ride your bicycle (or stationary bike). Even my beloved Tai Chi seems harder to do – due to the fact that my joints just don’t want to move like they used to.

Then there’s typing… Being a computer geek, my typing skill has always been important to me. Now, however, typing has become almost become a chore – especially for my left hand. I used to be able to do – I would guess – 100+ words a minute typing…. now I think I am lucky to get 30! Either the left hand wants to cramp up, or my brain says ‘Type this‘ but my fingers get a totally different message – which means I end up misspelling every other word! I usually end up using the old “hunt and peck” method, which slows things down even more! This is one reason why I’ve been somewhat complacent with keeping up with my blog – it’s a chore now just to type up my posts!!

Even my hobbies seem hard to accomplish sometimes! For instance, I like to build plastic models – planes, cars, boats, rockets, Star Trek ships… I’ve been gluing, painting and building these things since I was a kid, and I really enjoy taking a bunch of plastic parts and creating something. But now that’s the point – LOTS of parts, especially small ones! I now find simply handling these parts extremely difficult – especially when I have to hold them together as the glue dries. Again, my left hand has particular issues with building things – mostly thanks to good old dystonia. And my eyesight is nothing like it used to be, which only adds to the frustration… “Part 114Z… where in the heck is that? Argh, it’s so small – I can’t even pick it up! Where’s my magnifying glass??“

To make matters worse, I find there are things that I simply CAN’T do anymore… For example, getting on a ladder has become something I either rarely do or don’t even attempt! Maybe a small step ladder I can tolerate (if someone is there to watch me), but longer, higher ladders – nope, no way! There’s nothing more embarrassing (and dangerous) than having a Parkie – especially one with DBS wires in their brain – end up falling off a ladder and onto their butt – or even worse, their head! And that is frustrating for me, since now I either have to simply not do whatever it is I need to do with the ladder; or ask someone else to do it; or hire it out.

Writing – especially with a pen – is another one of those things I really don’t attempt to do anymore. Normally, those of us with PD experience writing problems as the disease progresses – where their writing becoming smaller and smaller. I don’t seem to have that problem so much, but what I write becomes basically… well, illegible. This is definitely true with my cursive writing, but my printing now is terrible! You know it’s bad when you yourself can’t read what you’ve just written on the shopping list! “Laobdey Slop? What the heck is that??” (should have been Laundry Soap) So now, for the most part, I end up typing on the computer almost everything I need to write and then printing it. And of course, that’s not easy because of my bad typing! If I absolutely HAVE to write something, I’ve employed my dear wife as my personal secretary… “You write it, I’ll sign it!“

Another problem is that I’m… well, rather stubborn (“You?!? No way man..) and sometimes refuse to ask for help! That comes from my upbringing – my parents divorced when I was 8 years old; and although my dear Dad was always there when I needed him, it was my Mom who raised my sister and I on a daily basis. She not only had to take care of us, but also work a full time manufacturing job! Because of this, we learned to be pretty independent and to do things on our own.

Unfortunately, now, that has come back to ‘bite me in the butt‘ so-to-speak. I HATE having to ask someone to help me with something I used to do without any problems before. And if I DO end up asking for help, it’s usually after I’ve tried doing it myself multiple times – and failed miserably!

So what have I learned from all this complaining? Well, I’m sure that as time goes on and the disease advances further, I’ll find even more things that are harder – or impossible – to do. But when this happens I find I need to concentrate on whatever it is I’m doing… and no matter what happens, be thankful for the things I can still do! That list is, thankfully – still fairly long: At least I can still type on my computer – although it takes me longer; I can still walk reasonably well; and even though biking is harder now, I can still do it – although for shorter periods. I can still do my Tai Chi – just, unfortunately, not as often or long. Thankfully I can still drive our Camaro, and I can talk and visit with friends. Hopefully I can continue to do some traveling; and I can still laugh long and loud – especially at myself!

That’s just a small list of things I can still do and be thankful for. And when something comes along that I can’t do, I have to learn to follow my own advice that I’ve given to you, my readers, many times before – swallow my pride and ask for help!

So remember – all those things you do that seem harder now, are only part of the story. Do what you can do, when you can do it, and make sure you ask for help when you can’t – even for the small stuff! That’s what your care partner, family, and friends are there for! You’ll get things done more quickly and with less wear and tear on your already burdened body! Most importantly, don’t give up!!

Till next time!