Since I first blogged about my life “Before I had Parkinson’s”, more things have come to mind that I don’t want to leave out… so I will write a Part Deux. Sometimes it’s hard to think about the time prior to a diagnosis because when you have a neurological condition, you learn to adapt, to accept and move forward knowing that you will never be the same person again. Not worse, or better, just different. So adding to my list…
1. I never spent huge amounts of energy just trying to blend in.
-You don’t realize the effort that goes into looking somewhat normal. The voices in my head say, “Stand up straight. Smile… Be sure to show teeth… Oh no, too much, pull it back a bit. Swing your arm when you walk. Ok, now your hand is shaking, so sit on it. People are looking at you. They must know you’re having a hard day. Laugh… not creepily like you’re about to rob a bank. You see my friends, it takes a lot for a Parkie to blend into the crowd.
2. A late night used to be a party.
-I remember in my younger years, it was cool to stay out late and hang with friends. In fact, many activities that were worth doing didn’t even start until after 10pm. Now with Parkinson’s, by the time the clock hits 9pm, I am on my couch in my PJ’s, with Fro Yo in hand, snuggling with my dog Crash, while catching up on the reality shows on my DVR. Somehow watching someone else’s mistakes and misery on the telly makes me feel better about my life. And if it’s one of those funky nights that I can’t sleep… thank you Diva Parkinson’s… I will almost be guaranteed to have a funky day. The next morning, my PD symptoms will be everywhere and the predictability of relief from medication goes out the window. Who wants to join my party?
3. I could walk out the door without a second thought.
-Now as my Parkinson’s progresses, I find myself saying out loud before I step out of the apartment:
-Got my medication… Check.
-Got my identification… Check.
-Got my Fro Yo, platinum level (oh yeah) rewards member card… Check.
-Got my water bottle in case I have dry mouth… Check.
-Got my lip balm… Check.
I am guessing it is just like having a kid and all the crap you have to bring with you just to go to the grocery store for a jug of milk. It’s almost like I have given birth to a demanding little disease that has completely overrun my life. Wonder if I should create a college fund for the little tyke?
4. I could sell ice to Eskimos.
-Well not literally, but I used to be quick with my words. I could sell you on any idea. Examples please, Miss Perky you ask? Once I created a whole fitness program with no money… From guest instructors, to field trips for exercise experiences, all the way to a fully stocked professional gym based solely from donations. I don’t mean to brag, but it was a moment in my life where I realized I could do anything that I put my mind to. Now I find that I can’t seem to get my words out, or that I am talking like an extremely caffeinated, ADD, Jack Russell Terrier… Squirrel! And what’s more exciting is the mumbling that I have recently started throwing in the mix. It’s like a game for the listener… Come on down! You’re the next contestant on “What is Perky trying to say”.
5. I could woof down an entire cupcake in one bite.
-Alright, so maybe I’m not proud of this accomplishment, but it’s true. Before I had Parkinson’s, I could even swallow a hand full of pills and not think twice about it. Now, even if a crumb goes into my mouth I choke on it. There is not usually a day that goes by that I don’t cough or have trouble swallowing my food. Silver lining? Fro Yo is easier than water to chug! Now who’s the winner?
6. I had beautiful handwriting.
-I loved a new journal to write in, or a brand new pen to scribble down my little daily notes. But now, I can barely read my own handwriting…
7. Someone could say “Hurry Up” and I wouldn’t lose my mind.
-Just tell me “hurry up” or “we’re running late”… I dare you. I feel almost like I am panicking if I know that I am going to be late for something. The Parkinson’s Diva comes out and says, “I will make you actually slower if you imply that I need to rush and I might even sprinkle you with a bit of anxiety.
8. I used to be able to tell if I had something on my face.
-I know this one might sound crazy to some people, but before I had Parkinson’s disease, I knew if I had food on the corner of my mouth or something in my teeth. Now, I have no idea that I just jumped into a conversation with my cute neighbor while sporting the chocolate ice cream I just hoovered down while shamefully hiding in my apartment… Well now there is no concealing the evidence of my reprehensible act.
Well I can only guess that my list of “Before I had Parkinson’s” will continue to grow, but for now this is the end of my part deux. Hope everyone is well and had giggle at how crazy life can be.
I am soo supported by this blog and the responses. I was diagnosed four years ago but the consipation and trouble peeing tells me it was having an effect seven years before that! I am still working as a university professor and seem not to have lost much cognitively. I think! I have to add to the list: Peeing at will and no constipation or hurry calls, but now I scope out bathrooms and get up at night and dance around to help the urine come out! Thank goodness for levodopa, at least for the three hours in which it works. So we plow on. My pleasures include being consciously grateful when I don’t have the feeling of pressing urine :). And letting myself slow down. Enjoying silly TV shows – the latest is the Muppets and Superstore. All the silliness of The Office and Thirty Rock. And films help me realize we all have life challenges, e.g., the new movies The Suffragettes and Brooklyn.
Thanks for the forum.
Garrett McAuliffe
One of the biggest “before PD vs now” frustrations, as mentioned, is typing, so vital in today’s world. I too have used Dragon voice software, and I can see where it can be frustrating. But my view on it is twofold: 1.) it allows me to get much more done with e-mails and other typing intensive activities than I otherwise could not do. and 2.) because PWP tend to have slurred and slower speech (one reason a previous poster gave for not using it), and many spend a disproportionate time alone because they may not be working, which in turn means they have less personal interaction so that they spend less time talking which results in bad habits, and so on, but by using voice software it gives you “someone to talk to” and because it will notify you when it doesn’t understand, it forces you to speak more clearly. It’s actually the next best thing to having someone to talk to and yes it can be frustrating at times but it is actually good speech therapy. It will also adapt to your voice to some degree.
(continued…hit enter by accident)
This week I turn 58 and am into my 18th year with officially having PD. I can relate to everyone’s comments about before I had PD. The best way I can describe being out in public is that it is like when the typical person is driving a car and they are constantly glancing in the mirrors to check for who’s behind or alongside them, looking out the side windows to see what’s happening, monitoring the speedometer, etc. But instead of only when driving, having PD puts one in the constant mode of always “glancing in the mirror” for people’s reactions, of being aware of facial expressions, and all of the other things Allison mentioned. Forget about trying to excel, it is a major effort just trying to be “normal”
This week I turn 58 and am into my 18th year with officially having PD. I can relate to everyone’s comments about before I had PD. The best way I can describe being out in public is that it is like when the typical person is driving a car and they are constantly glancing in the mirrors to check for who’s behind or alongside them, looking out the side windows to see what’s happening fr
I sooooo can relate, especially the first, blending in. So much effort to try and SMILE just to not look blank faced! Choreographing every step. Making sure one foot is down the step and one hand holding a rail, chanting “Heel-Toe-Heal-Toe” with every step. BLINK, Remember to blink. And use your eyebrows for expression. Have a solid plan for getting out of your chair, and a quip of a joke when you have to try it again. Swing arm. No, the other arm!! Pretend to tie shoes when you stand and get dizzy. And we wonder why we are so tired??!!
It seems strange that out in the world there are people who share the same experiences that I do, probably at the same time. Makes you wonder doesn’t it. The only item I didn’t see mentioned was trouble sleeping, I used to be able o sleep for 12-15 hours, ask my kids they will shout yes and now a good nights sleep is 6 hours no more, no less and that is with meds. But as a very wise Dr. once told me if you have to have a disease of the brain, this one’s not bad, probably won’t die from it, and I do believe that in my lifetime and I’m 68 years young they will find a cure for this insidious disease. Anyone agree?
I hope they find a cure within our lifetimes. It’s encouraging that there have been so many advances and new medications!
Another thing…I used to be able to type fast and accurate Now, I never know when I will hit the wrong button and post before I’m ready! Anyone relate?
Well Ms Perky, you will find things to add to your list and I agree with David that age has something to do with it. But take heart. Just as our personalities are different, I don’t have to tell you that our PD symptoms are different.
Wait until your check off list of things to check off when you leave home includes depends!
I very much enjoy your posts Miss. Perky. I hate to be a downer but a question popped into my head when reading this. I was wondering how much time went by when things started to change for you. Myself being early stages (dx last Oct.) i can relate to some things but not all. I know everyone progresses differently but i am curious with time lines.
I’ve been diagnosed for 5 years, but have symptoms for 7 years. Don’t forget we’re all different and have our own unique disease.
Hmm. Are you sure that it is a list of pre-Parkinson’s? I don’t have Parkinson’s but am getting older, or as I prefer to say, getting more mature. Maybe its just because you are getting a little older.
1. Just blending in… Well, Ms. Perkie, I doubt that you EVER just blended in. When I first met you, you stuck out but not because of the Parkinson’s. I didn’t know that about you until you told me. Instead, you STUCK OUT because of who you are. Instead what impressed me the most is how you “beamed” and were so energetic even at a very difficult time for your and your family. I found you to be very vivacious and full of life. Then after reading your book, learning more about you and your trial and tribulations, I would have to say that you don’t blend in at all but not for the reasons you may think. It might be because of WHO you are and not so much any other reason.
2. A late night? When younger, I could easily pull “an all nighter” but now after working 8-10-12 hour days, an “all nighter” is out of the question. Yes, I am getting older.
3. Walking out the door without a second thought? Well again that is a just a sign of “old age”. Why do you think that so many people leave the TV remote in the refrigerator? :0
4. This is something that I still do. Maybe I am not as old as I feel. 🙂
5. I used to eat a whole pizza in a single setting. Now I have to watch what I eat.
6. I never had beautiful handwriting.
7. Hurry up? I just remember, the bumper sticker ….. ” I am Pedalling as fast as I can” on the old cars I used to drive.
8. Maybe its a guy thing but I have never been able to tell if I have something on my face or anywhere else for that matter.
Allison, I am not trying to make light of your comments. I am sure that they are “right on the money”. However, I am trying to make you smile a little and realize that its not as bad as you may think. This is especially true with and because of your support system.
I wish I had your energy and positivity ,my engery/surgarys are nothing compared to you,but I’m tired.ill come see you next time I come to the other office
darrin
I am so inspired by these words… . It is like being on the same team. Thanks. Garrett Mc
I can relate to the having to constantly check for meds and hating when someone says hurry up…seems like the faster I want to go the slower I move!
Thanks for writing!
Well said!