Monday, December 16, 2019

Plate Spinners

Managing lift with Parkinson's is lot like being a plate spinner at the circus. Early on in the course of our disease we just have a few disease management tasks because we have less problems and our meds work better. We still have energy and can pretty much handle the disease alone. As time goes on, like the plate spinner adding more plates, we add on more medications and have more drug interactions to manage. When symptoms get worse or new ones develop our lives get busier managing our disease and it's challenging to keep all our plates spinning. If we're not vigilant and can't keep up, plates wobble. If we're not sleeping, it's hard to exercise. If we are not exercising, our symptoms get worse. Over time. PD keeps adding problems and taking away energy. We need help to keep all our plates spinning, or else!

Thursday, December 5, 2019

Call Me Unreliable

Before I was diagnosed with Parkinson's I was punctual, if not early for every appointment or event. I didn't even know how to be fashionably late.

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.

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.

Wednesday, July 10, 2019

Talking to Bellybuttons

I am writing this post to honor the memory of my sister, Terry Bittker, who throughout her life advocated on behalf of people with disabilities.

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 a name. 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.

Over the past few years she had mobility impairments that kept her housebound, for the most part.  She used an electric scooter to go out. The physical world if full of barriers when you can't stand up, walk, or go up a stair. 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.

As a new mother, I didn't trust anyone to hold my babies or care for my kids, but trusted some others more than Terry. She knew the score, and for the past 36 years, at least once a month, I heard about it!

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 understood what it's like to walk into a store and have everyone look at you, wondering what is wrong with you. She understood what it's like to have people avoid you, like when I am breathless, dyskinetic, thrashing about, walking like a drunk person with words spilling out of my mouth faster than the thoughts they represent. I can't do what I used to be able to do. I over promise and under deliver. I'm not who I was, in many ways.

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.

I wish everybody would sit down whenever they talk to a person who is sitting down because they are unable to stand. No one wants to talk 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.