It’s been a few weeks since my last post and I have continued to have health challenges, physical and otherwise but I’m still standing and that’s a Good Thing. I wanted to take a little time today to try to articulate the non-physical side of PD, the impact it has on personality, mood and behaviour. This is all from my perspective of course. What I do know is that each person’s experience of PD is different, it’s a tricky little beastie like that….
So, for me, PD has a some definite effects including:
• Tiredness – I’ve just returned to work after a few weeks’ absence and its REALLY hit me how, when I overdo things, my PD symptoms increase a lot. Tiredness is one. I’m not talking about feeling sleepy (the drugs do that to you it must be added though) no, I’m talking about a lead curtain of exhaustion that descends and stops you in your tracks. It stops you thinking straight, it stops you articulating thoughts, it stops you even trying sometimes. You just want to crawl into a dark duvet and drift away until it’s over. Except of course, most times you can’t. I liken it to that shaky, sugary feeling you have when you have a bad hangover except you can’t get rid of it with a fry up. Shame.
• Apathy – overlapping with this is a general increase in overall apathy. You know, the tendency to put things off until tomorrow. I have piles of paperwork that while I know isn’t urgent, will become so unless I deal with it. And yet I shuffle it from place to place .Now, partly that’s me, but increasingly it’s the PD playing silly beggars with me. This one annoys others the most I’d say because it looks like you’re just plain lazy. And you’re not, you just feel incapable of dealing with whatever it is, so you postpone it. Again.
• Mood – well, this is a bit circular. What comes first, the PD or the depression? In my book being dx with PD is pretty bad news and you are likely to get a bit narked by it. But I have noticed my mood has darkened on a pretty consistent basis together with an increase in anxiety levels. Hence using the happy pills (still working ok btw, thanks for asking) and trying to address stress levels etc.
• Spatial awareness – what can I say? I have bruises all over my arms from banging into doors.
• Executive function – or the ability to multitask, prioritise and general deal with life’s multiple challenges. What a brilliant skill to have impaired, eh? It’s a doozy – I find this hard to accept too as my job, personal life and nature is founded on the ability to do loads of things all at the same time. I end up getting very frustrated and impatient. Must try harder to deal with this one. I find lists are invaluable here. I write down everything I want to achieve and knock them off one by one. Helps with the apathy too.
Overall, without sounding to down, it’s a very isolating disease mainly because it affects so many aspects of how you not only act but think, interact with others and generally exist. A non-sufferer is onto a sticky wicket trying to empathise with this little lot. I find it hard enough to keep a track on it all. When in doubt of course the trick is to talk about it to your family and friends.
But try not to be a PD bore, life’s too short for monologue after all.
I’m looking not only for physical balance (I keep toppling) but emotional and mental balance. I hope this little run through the more hidden aspects of PD helps you find yours. Let me know!
My other blog btw is here.
Stitch
Shall I introduce myself? My name is Stitch This. Ah, you've guessed already that I've made that up, nobody would have parents that cruel would they? No, I write under a pseudonym so I can feel fairly free and easy about my comments and thoughts. So much more fun when you are invisible I think. I have two small, noisy, sticky boys and a husband who is rapidly turning into a boat-head as a pose to the rabid petrol head he has been ever since we met. Which was when we were 18. I am in my, ahem, early 40's and was diagnosed with Early Onset Parkinson's in January 2008 although the symptoms started Summer 2005. I have an established blog where I record my stitchy attempts and general life ramblings which hitherto has included PD stuff to a certain extent. It was that blog that has brought me here.
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Thank you for this considered overview. I recognise several of the things you mention, although, as yet, none have become a major problem for me.
They are all pretty much “invisible” symptoms to the outsider, aren’t they? And so unexpected in someone of (y)our age.
It often seems to me as if you are just ahead of me on this unwanted, lonely journey. But there isn’t a map, and we all make our own unintentional diversions from the ill-marked path. It’s good to catch a glimpse of a fellow traveller from time to time.
on July 6, 2012 at 8:22 am ZalamandaIt does not have to be a lonely road. A gentleman I dated has had it for a little over ten years and I have known him for a little over six. He never told me he had it and I assumed he was struggling with depression and some prescription drug use because he would just nod off at dinner or anywhere.
After ending the intimate relationship I moved away and we have remained friends over the years. I have became very concerned about his health as he seemed to be drifting further into what I thought was a funk. After calling him and being concerned about falls and his overall ability to communicate and function, I returned to Atlanta to checkup on him because he is a loaner (CPA/Nerd).
Come to find out he has PD and never told a single soul including his family and closest of friends. I made him take me to see his doctors when I got here he was in such bad condition.
I have not left his side and he has turned out to be the love of my life. People suffering from PD are still in there, they are just having a hard time getting their brain and body to take commands and it is very frustrating and depressing. He has been a 10K runner for almost 20 years so it was devastating.
Don’t go into a shell and don’t think love is out of your reach. I think if anything it brought us closer because there was is no room for impressing or the usual insecurities and games that can come with starting or maintaining a relationship.
I don’t recommend this but he stopped taking the head pills (Zoloft) and other antidepressants a little over a week ago and he is in better shape mentally than he has been in years. His daughters also know now so he has a support system that loves him and my family has embraced him.
I stopped playing nurse and make him date me. We have date night and he has to take out the trash and clear the table. I was initially spoon feeding him I felt so bad. But I find that it is as bad as the disease to treat PD victims as if they are helpless or half dead.
We have date nights twice a month and game night every Friday. I challenge him to think and any excuse to make him read. He doesn’t get a lot done, but he is getting more done. I pitch in helping him pay bills, and maintain his environment and hygiene. He has every gadget he will ever need, but doesn’t exactly right now. I jumped the gun got a wheel chair, walker, bedside commode… you name it. Not anymore do we use any of that and he doesn’t need it.
He has had a physical therapist coming to the house and now he is ready for outpatient physical therapy. Keep your body moving and keep reading. And ;most importantly, don’t give up on yourself. It is a cruel and ugly disease but you can learn to manage it.
I will probably marry Arthur. We are currently redecorating and he has a new mancave (how generous of me considering it is his house…smiling) that he loves. I keep pictures up of his running and his professional accomplishments so he can have a focal point as it pertains to who he is, was and what he is capable of.
We have a wonderful life and he is actually making miraculous improvements and many think love did it.
Don’t ever give up on finding a mate. Not all of us are afraid, or scared of PD. People are actually amazed at how well he looks and how well he is doing. I have never seen him so vibrant and full of life… and love. This was a die hard bachelor and not too mention great catch, so PD was again… devastating and humiliating for him. Today, he is back on top of his game and we are falling in love more and more everyday… and I am quite the catch myself…smiling.
I found the love of my life in Arthur.
on May 21, 2014 at 3:35 am Meyor