Friday, December 6, 2019
My friend, Derek, was my BPDF (Best PD Friend). I thought he would be my BPDFF. We met in a support group in 2006, a year after we were both diagnosed. Our symptoms, progression, response to medications was always in synch. We supported each other step by step for 12 years. Derek died unexpectedly 6 months ago of “complications of PD,” that being an inability to bring up his BP during a cardiac problem due to PD meds. Doctors tell us we don’t die from PD. We die with PD. I’m not sure that distinction much matters. None of us can predict our future. Worry is not preparation. Derek smiled all the time. We’d joke that his facial expression just froze that way. Make sure you love and laugh every day! This picture reminds me that PD SUCKS, but LIFE DOESN’T.
Thursday, December 5, 2019
Having always been a bit of a spacecase, It wasn’t unusual for me to be a whole day early and on occasion, a whole week. But still on time. Wrong day. Right time.AIRME
Over the past 8 years or so of the 15 years I have knowingly been living with Parkinson's, my on-time performance has slid from being unreliable (often late), to being reliably late all the time. I am getting later and later by the day.
Some of it is due to medication fluctuations. A lot of it is due to being distracted. I am like a three-year-old who knows, step-by-step the tasks that need to be done to get ready to leave the house, but like a three year old, I get distracted by something that catches my attention, and although I know the clock is running, I suspend time in my mind.
For those of you that are over three years old and do not have Parkinson's, you can relate this example: When you are at your computer, and you are waiting for a page to load, and that that little swirling circle keeps going round and round, doesn’t it feel like that time is off the clock while you wait the page to load?
It’s kind of like that, but worse.
Parkinson's gives us lots of reasons to be late:
Moving too fast and uncontrolled with dyskinesia, makes us late because we drop a lot of things, lose a lot of things, smash into a lot of things, and forget a lot of things.
Moving very slowly, if at all, when meds are low, we get very little done. Rushing us causes a stress reaction that makes us freeze. We get stuck. Another time out.
If we get it all done, it takes us forever to walk to the car or get to our destination.
Of course there is always the last trip to the bathroom. Until the next last trip to the bathroom.
People are becoming increasingly frustrated with me.
But today I realised I am becoming increasingly frustrated with people. A lot of people. All the people who send me text messages.
Today I ran a tally of the time it takes for me to respond to text messages. People with Parkinson’s are on a different time clock than normal people.
From most people, who sent me a text, it takes about 10 seconds and they do this while simultaneously doing something else.
It takes me 3-5 minutes to respond to that text. I have to stop what I'm doing. I can't multitask. I have to find a comfortable place to sit. I have to prop my elbow up so I'm not bending my neck way over while I text.
If I type with my fingers in my tiny little iPhone section, it takes me quite a while to type one line of text. I seem to be pressing the key to the left of the one I want.
I have to drink some water so my voice is not too scratchy for my voice recognition app to work. Sometimes those apps are even more time consuming because they make more mistakes than typing.
I have to reread and edit before I hit send. I have so often sent such erroneous text messages, because my PD fingers hit send send button before im ready, that I mostly now write my text in notepad first. A short text takes me a good 3 to 4 minutes. I have to add another minute for getting out of the chair and remembering what it was I was doing.
Then I get started, another text! Repeat cycle.
This morning between the hours of 9 AM and 3 PM I had lost an hour and 3/4.
No wonder I get behind so much every day and no wonder I’m late all the time.
I’m done texting. I could use that time for course stabilization exercises. Hydrating. Taking a shower. Calling a friend. Knocking something off my to do list.
I can’t really control any of that, but I can control the time I spent texting.
So, please be on notice that if you need me, call me or email me. If you text I’ll respond later, usually in the evening when I’m wiped out and sitting down for awhile.
In the event of an emergency, call 911.
Monday, December 2, 2019
The Billy Crystal “You Look Mahvelous” Method of Staging Progression of Parkinson’s Disease Stages.
I was being driven in an Uber today en route to my most frequent destination lately, Mass General Hospital. I was with my new aide, Juliet. He owns a home care agency and knew Juliet. They were talking shop and unsolicited, he said the he figured I had either PD or MS. AND he added a later stage of MS. Thank you, Mr. Uber Driver. (There goes your 5-star rating.)
But I still tipped him, because he’s in good company these days. No one tells me I look great anymore. Or that they would never know I have PD. If I’m not dyskenetic, however, they think I’m doing better. They see the excess movement and the wriggling as being worse, and the lack of motion as doing better.
I started thinking about how observers who know neither us or about Parkinson’s disease nonetheless put us into a stage of the disease based on how we look, and devised a new method of staging Parkinson’s disease.
I’m calling it The Billy Crystal “You Look Mahvelous Method of Staging Progression of Parkinson’s Disease Stages.
Stage 1: “You Look Like Hell.”
Shortly before and after diagnosis.
Stage 2: “You Look Mahvelous”
After optimized on medication.
Stage 3: “You Don’t Look So Good”
The doo-doo starts to hit the fan as meds are starting to fizzle, and the transition from person with PD to patient with PD begins.
Stage 4: “You Look Mahvelous”
This might look like a repeat of Stage 1. It is not!
At this stage, when someone tells you, “You look marvelous,” you smack them upside the face.They think this comes easy. They think you have PD-Lite. They don’t get that you look like this because you are are working your ass off. That’s the difference!
Stage 5: Ain’t nobody sayin’ nothing ever, about how you look.
Dyskenesia’s are not well received by the public. At this stage you don’t care anymore about how you look to others. Your work is to BE MAHVELOUS!!
Sunday, December 1, 2019
Sign language for "Love"
My sister had disabilities that were hard to put neatly into one diagnostic category. She had some health problems from birth, some she acquired along the way, and some were long standing but unrecognized.
Terry's constellation of problems didn't have a diagnosis, didn't fit into an identifiable group, didn't have ame. She wasn't like anyone else. Terry understood the difficulty of living with advancing Parkinson's Disease in a world where very few people understand what that means, more than anyone I know who doesn't have the disease themselves.
Terry's medical and health problems were not the greatest challenge in her life. They should have been, but they were not.
Her biggest challenge was finding a place she fit in, finding people like her. She wasn't completely normal, and she wasn't completely abnormal, something I now identify with as my disease advances.
Terry with her dog nephew Jasper.
It's nearly impossible to negotiate someone else's house. If you could enter, very rarely is there a home bathroom that can accommodate the needs of a disabled person. I have similar limitations from PD. Unlike Terry, I can still maneuver through a home, but can be uncomfortable, embarrassing, fatiguing, and sometimes unsafe.
We are/were loved by lots of people, but when you are homebound, single and live on your own, it can be a very lonely life. Nothing takes away your quality of life more than loneliness.
Terry longed for ways to reengage her life, to socialize more, to go out more, to be with friends more. I have been more homebound and more lonely over the years, but because I have Parkinson's Disease, I am part of a community. I have support groups. The symptoms of PD are massive, diverse and affect every part of my mind and body, but they are all contained in one named diseased, shared by one million people in the United States alone. Parkinson's Disease has expanded my connections to others. I am not alone in my disease. Terry was.
Terry had a stubborn determination which served her well. She overcame developmental and educational obstacles. No one caught that she was hearing impaired unit the 4th grade. She missed 2/3 of every sound, word, conversation and lesson in her life. My sister graduated from Gallaudet College. She received her Master's Degree in Social Work from the University of Maryland, acquiring the skill set she needed to help disabled people get the accommodations they are entitled to by law, and to get them at no cost.
Still, those accomplishments often did not give her the acceptance and inclusion she deserved. The world can be very unkind to people they don't understand. There are people who don't even try to understand someone different from themselves or someone they cannot put into a category they already know.
Many are impatient, frustrated, and even angry when such folks get in their way or interfere in the pace of their day. Some reject, ridicule or feel repulsed. Many with great compassion and the kindest of intentions, give a smile. But it's not a peer-driven, "Hey, how ya doin" while you're passing by kind of smile. It's a smile that comes from pity.
From those who gave her automatic disapproval and withdrew to those who gave her unconditional approval and attached, my sister was often not seen for who she was. And that's their loss.
The people who saw Terry for who she was, developed lifelong friendships. Terry had the longest and strongest friendships of anyone I've ever known.
Growing up, we didn't know there was anything wrong with Terry. We wanted her to do what we, her two older sisters, did. Often she couldn't and we would be frustrated. We didn't always defend her or protect her from others who would humiliate her, belittle her or shame her.
As a young adult I could be impatient with her. She was time consuming. She often did not get top priority in my life-listening-time. I didn't always appreciate the significance of her accomplishments.
My sister holding her great nephew
It wasn't that Terry carried a grudge. It's that she knew right from wrong. Terry had boundaries. Limits. When you crossed her boundary, you knew about it. Our family used to say "Terry tells it like it is," when she would blurt out what everyone was thinking but no one was saying.
To "Tell it like it is" you have to "See it like it is." Terry developed a keen eye for discrimination, intolerance and unfairness. She also developed thick skin, was tough, and didn't hesitate to speak her mind. She would call anyone out when they were not doing right by the disabled.
Parkinson's disease is not a disease for the self conscious. My sister was not self conscious. She demanded to be recognized with dignity. I remain self conscious, often trying to hide the indignities of my disease.
I no longer feel comfortable in groups of normal people. I have panic attacks when my movement freezes up and I have to walk in front of people I don't know. I only feel comfortable with other people/ patients With Parkinsons, with family and close friends.
Terry's last birthday at 60.
It embarrasses me that often, I have to sit and cannot stand. I avoid parties and group meetings where there is a cocktail hour and people stand, mulling about the room.
I absolutely hate when I am sitting down and someone comes over to talk to me and STANDS in front of me. They don't know that I am unable to lift my head to look far up enough to see their face.
Thus, I get stuck talking to bellybuttons.
When talking to a bellybutton, I should speak up. Terry would.
She would not have made whispered requests, like I do - embarrassed, apologetic, as though I'm asking for a favor.
She would have said it like it is. "I do not want to talk to your belly button. If you want to talk to me, sit down!"
You would have gotten that right, sister! And now, I will too.