Monday, February 29, 2016

Let's Talk About Parkinson's Disease

If you, like me, thought of Parkinson's disease as one that leaves the victim with mostly hand shakes, we are about to find out that although that is true, there are other debilitating complications that come with the disease.

But, wait, I'm getting ahead of myself. Let's first see Maureen on her last go round with the darling physical therapy girl at the rehab center.
We learned that Pryia was a Magic girl for five years which means something to Orlando folks. She was so darn sweet.  Her last instructions to Maureen were--move, move, move! So, Friday morning arrived with discharge set for between 10-12. Arriving a little after 11, we waited and waited. Maureen was anxious to spring that joint!! As we were to soon learn...be careful what you wish for.

At any rate, we drove home without incident, and as we turned onto Maureen's street, she shut her eyes tight. You know, how they do on HGTV. It was super good that Bruce was there to receive us. Backing the car into the driveway, Maureen was able to exit with some room to maneuver up to the house. We are happy to report that she was delighted with the paint scheme, including the door! Bruce helped her around the house, and it was so gratifying watching her reactions...
The above room looks vastly improved. Before I picked her up, I'd done some grocery shopping so we thought we were prepared. Again, we were to soon learn, that was not the case at all. When we walked up to the house, there was a lovely bouquet of flowers on the walkway from her daughter in Atlanta. The chair is working beautifully.
Speaking of flowers, Maureen received such a lovely bouquet of roses that I wish I'd photographed earlier. They still look good, but believe me, they looked even better before!
In yet another God send, Lisa had come by earlier with some much needed equipment, which I moved indoors while loading groceries into the fridge.
The potty chair and shower chair have proved invaluable! For three plus weeks, Maureen had only a sponge bath, but on Saturday morning I got her into the shower where she stayed for nearly fifteen minutes under the healing power of hot water.

Backtracking a moment to Bruce, I finally went by his job site which is only about a mile or so from the rehab center. They have some serious signage going on, as well as barricades. In Canada they call it hoarding. How about that?
For my Orlando friends, here's another look so you can get your bearings.
That, my friends, is it for photographs, because the truth is, I've had very little time to take anything more. It is probably just as well that my owls are nowhere to be found according to Nell, the woman who lives in the house where I took last year's photographs.

So, what I really want to talk about is how debilitating Parkinson's disease is over time. Yes, people get tremors, which to me, is the least of their problems. Seeing how much Maureen is struggling, I did some looking, discovering that there are a whole host of problems associated with Parkinson's, which only get worse over time. Like memory for example. Sure she can remember the theme song to Romper Room, a show we watched when we were kids, but did she take her medications in the morning? Not quite sure.

Then there are bladder problems, something this 13 year old bed wetter knows something about. And what exactly did they say about how you should walk? Definitely not on your toes, as is quite common for a Parkinson's patient. Confusion--check. When someone breaks their hip it is really, really bad. When a Parkinson's patient breaks their hip, it is whatever the next worst word you can think of because a Parkinson's patient already has difficulty with gait. As they do with movement in general. Then there are the everyday challenges that only increase in difficulty as the years progress. Yes, there are medications that can help, however, they can only decrease the severity of symptoms. The longer you have Parkinson's disease, the more pronounced the symptoms. I love how they label these problems as complications on the Mayo Clinic website. NOT!

A good friend told me how the neurologist who was treating her father-in-law showed the MRI to his son. See that black hole in your Dad's brain? That is how much functionality Parkinson's has claimed. Now that is quite a picture, isn't it? Early on there are probably black holes here and there in the brain; as time goes on there are more and more, making daily life increasingly difficult. Did I mention there is no cure?

Had you been following this blog, you now know what a challenge Maureen faces in her recovery. Would we all love it be an easier climb? Of course. Will it be? Not very likely, although we are working every single day on giving her every opportunity for success.

Those groceries I purchased do not mean a thing at this point because with two shaky hands on a walker, there is no getting, even microwaved food, to the table. We are working on that. Four days in at home and so far it is not getting any easier, but today a home Physical Therapist came by and gave us some tips. Little ski tips for the walker, for example, should make it easier to move on the carpet. Bruce went to the medical supply place to purchase a tray for the walker, as well as a grabber should she drop something. Both weren't ideal. More shopping, and the skis are now on the walker, as well as a basket to carry things. Tomorrow morning we give a different tray a tryout, hoping no modifications are necessary.

So, the coolest woman any of us knew is not the same, and never will be, making me incredibly sad.

Tearfully,

Gail



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