Wednesday, December 28, 2016

PD

My husband has PD - Parkinson's disease. It's a neurological disease, a quirk of the brain in which the cells that produce dopamine wilt away. Dopamine helps control movement, among other things. If you don't have enough of it, things start to go awry.

It's a sneaky bugger and has probably been worming its way through my husband's brain for at least a decade, maybe two. The non-motor symptoms are often not loud enough signals to alert you that things are not right. Every one of these symptoms, as examples, can be explained by something else: change in taste and smell (that's just the way I am); swallowing difficulties (maybe I'm allergic to milk?); nausea and vomiting (I've got the flu); constipation (something I ate?); unexplained changes in weight (How come you're losing weight and I'm not?); dementia and cognitive impairment (Did you just forget and or were you not listening to me?); depression and anxiety (Maybe you need a change of scenery); sexual dysfunction (age?); excessive daytime sleepiness (age?); REM sleep behaviour disorder (you were sitting up lecturing while asleep last night ha ha); restless leg syndrome (body pillow in the middle of the bed prevents you from kicking me).

The symptoms hide and seek, too, play tag with one another; not one of them stays long enough, so you don't connect the dots. At least, we didn't. Three or four years ago, I noticed the depression and anxiety stayed around, however. Though my hubby is my opposite as far as introversion (him) and extroversion (me), he has always been friendly, funny (telling corny jokes til we begged him to stop), loving and happy. He sang like an angel! Played the guitar beautifully. When I coaxed him out for social engagements, he had a ball. He gardened, did handyman stuff around the house, snapped gorgeous pictures, took videos of life events, played with the grandkids and always, made me laugh.



It wasn't anything overt. I didn't put the signs all together. I thought he was bored and therefore depressed. I knew he was tired of the traffic around our city, so I coaxed him into moving to a smaller town. I talked him into spending a few months in Florida two years in a row.

Not until the resting tremor arrived did I start to think there was more to this "boredom/depression." First the right arm, then the right leg. Particularly at times of stress. On our way home from Florida two years ago, I thought there was something wrong with the car, but it was the jerking of his foot on the gas pedal.

It took a long time to get a final diagnosis. Many health professionals declared it wasn't PD because Vince didn't (and still doesn't) have all the motor symptoms. So far, the motor symptom part has remained in his right arm and leg. But no one should state categorically, "it's not PD" because it's a bespoke disease. Tailored just for you, dependent on how the individual's brain reacts to the loss of the dopamine chemical. As the guide for the newly diagnosed from the Michael J. Fox Foundation states:

"Which symptoms develop, and how severely and quickly, is unpredictable in PD and varies widely from person to person. Common symptoms include tremor, slowness, stiffness, rigidity, difficulty initiating or controlling movement, balance problems, unpredictable movements, cramping, and speech and swallowing problems. Cognitive problems, such as short-term memory loss, difficulty following complex instructions, or a loss of multitasking ability, may also occur. Clinical depression, anxiety and apathy are often caused by PD. Some people will have several symptoms. Others will have only a few."

We were eventually referred to a movement disorders clinic, where a neurologist with special training in Parkinson's gave Vince the diagnosis. It was almost a relief. All the mysteries were solved. Vince was relieved that, as bad as the news was, PD isn't fatal. He also wasn't crazy!

I've learned that my incessant questioning ("Are you happy?") wasn't just from my own insecurity. PWPD (people with parkinson's disease) have a rather grim or not easily determined facial expression. I realized I hadn't noticed the crinkly-eyed relaxed face for a long time. It's hard to describe, because he does still smile, but his natural countenance has changed over the years. It's most noticeable for a partner, since we all rely on body language so very much.

I also have to learn to handle Vince's anxiety. Know when to pull back or rearrange. Realize that his reactions to noise or a crowd or some little thing going wrong are sometimes exaggerated by the disease, not the situation. Learn different ways of calming him or allowing him to remove himself from the area. Which even might mean that I, the party animal, will have to slow down too! Learn some different ways of being happy and satisfied.

I admit I hate the unpredictability of PD. I like to plan ahead. So the fact that the symptoms might progress slowly, might never appear, or might lunge up unexpectedly at any time, drives me a bit nuts. In this case it's probably better not to know. Go with the flow. Something I rarely do but ought to learn. Focus on the present. It's a skill I've never acquired, but it's not too late. 

I have my writing and, while Vince is still independent at home, he doesn't mind when I flit about. So I've booked a couple of trips by myself or with others this year and one with Vince. I don't particularly like traveling without him, but I'll keep myself busy taking pictures to show him. I also have a few writing projects to complete.

Thus life goes on. Different perhaps than anticipated, but still wonderful.

We're incredibly lucky in many many ways. New babies in our family and extended families and all kinds of little ones racing around, whose voices keep us in awe and in love.

We're still learning, researching, talking about it with our wonderful adult children, our other family and our friends. Our neighbor in the condo corporation has PD and she has shared a lot of information with us. Our next steps are clear. Eat better, exercise, explore the medication options.  The eat better and exercise steps will be good for me too. Plus the learning to slow down...though I'm a bit of a slow learner there, ha ha.



Thanks for your emails and words of support and hugs and honest talk and just for being there.
Cathy
(PS My daughter and her partner gave Vince a donation in his name to Parkinson's Canada as a Christmas gift. They're a wonderful organization and we've already gotten huge amounts of information from their website.
http://www.parkinson.ca)




5 comments:

Melodie Campbell said...

This is a wonderful post, Cathy. I am grateful for you bringing us into your experience and exploration of Parkinson's, and I have definitely learned a lot simply by reading this. In fact, I've learned more from your post than I did in my hospital years.
Vince is a wonderful guy, and you, my friend - well, he is lucky to have you. As are we.

Catherine Astolfo said...

Thanks, Mel. I can't say enough how much I appreciate my friends.

Michelle Edmonds said...

This was beautiful Cathy! So informative, so sensitive and so well written! It certainly helps to understand what both of you are experiencing. I believe it is all part of the journey and all part of evolving, no matter how difficult. Retirement is the gift of time to really discover our true selves and hopefully evolve to another level. You mentioned living in the moment and going with the flow. I can highly recommend both. Sorry, I don't mean to sound preachy. There is a book called "What Happy People Know" that is really good. Well worth a read.
Anyway I just want to wish you both all the very best and lots of good luck on your respective journey's. I wish you courage, faith, peace, love, hope and some joy. Take care of yourself too Cathy. I see how rough this can be on the caregiver. Colin has really gone through the mill with our whole process. Vince needs you but he needs you well and strong. Okay I'm definitely being preachy now - sorry! Sending you both lots of love and hugs, Michelle xoxo

Dale Cimolai said...

Oh Cathy I didn't know I'm glad you are putting yourself out there for all of us as well as you. PD is affecting both of you with its process, you are learning to live with life differently.
How beautiful and vulnerable of you to share. How else do we learn from one another? How else would we be able to support you?
You're writing is honest, open, vulnerable, poignantly beautiful in it's reaching out.
I hear you. I see you. I appreciative your trust! Proud to be one of your readers. Blessings to both of you

Rosemary McCracken said...

Thank you for this brave post, Cathy. I've learned a lot about PD from it, and a lot about addressing a life challenge from your positive example. May you and your wonderful Vince have many years of happiness together.