Good Days, Bad Days

Be, the Box Turtle, fails to negotiate a high (for a turtle) and narrow path.  Courtesy Toni McLaughlin

Some days it doesn't pay to venture out.  Some days, we try our hardest, but, instead, we fall on our faces.  The last few days have been difficult.  The Klonopin the neurologist gave me has started doing what other sleep aids did--Ambien, for example, which can make a person somnambulate, take a spin in the car, and strip the 'fridge of every bite of food.  Well, instead of helping me sleep right after taking it,  this stuff did little when I took it, then "rebounded" 12 hours later and almost caused me to fall asleep driving.  After I got home, I then slept, but I already felt like Be above. So I have been resting--camouflaged in my surroundings.

One of my former captains, Tom Mayberry, died of "complications of Parkinson's" the other day. How we hate to hear those words added to an already upsetting death notice. Couldn't they be specific and tell us what specific complications?  Tom was a good man and the kind of captain who trusted a person to do her job if she had proven she was competent. He was my captain on the arson squad. I loved that job; he hated it. So he let me do my job, and, when standard operating procedures called for his presence, he stayed out of my way and let me work, but he always had my back--which is what a person wants on a dark and dangerous night. Captain Thomas Mayberry (Nashville Fire Department, ret.), may your memory be for a blessing.

Depression often accompanies Parkinson's, especially when we feel worsening symptoms.  Yesterday, I don't know which came first.  What I do know is that venturing into the classroom--head out, legs strong and ready to navigate out of the mitzrayim [Hebrew, narrow places] and emerge as the dynamic and charismatic professor my students went on a waiting list to get--led to tremors, doubts, and one student's defiant rudeness.  I  had an uncharacteristic misstep from which I could not recover.  I think of our dopamine problem coupled with depression as dueling banjos for which we take often contraindicated medications. I confided in my fellow teacher, Ray, who has more years of teaching under his belt and who well knows distracting health problems. He gave me that permission I needed to be good to myself and go home......oh, and not worry about calling off two classes.

Soon I start  LSVT LOUD speech therapy for people with Parkinson's and other  conditions. This is a positive step and will require a month of intensive therapy.  Now, at this very moment, I have to do what I promised to do when I started blogging and get my walking stick out and venture out of my safe place into 29-degree weather.  I was starting to give in to worries about speech, swallowing (or not), the dreaded mask, tremors, and the big D.  So here goes. Be's person, Toni, says Be is not hibernating this year, but, fortunately, she doesn't live in this climate, nor does she actually live outdoors; she goes on supervised adventures.  Here goes--for Be, for all of us living with PD, for our significant others who live with this as much as we do, and for my sanity--a walk and a concerted effort to climb back onto my path, however narrow and dangerous it gets.

What's this? A new path? Come, check it out with me.
(Photo courtesy of Toni McLaughlin)

Dinner, Fun, and Learning Things

Well, it wasn't quite a birthday party night before last, but it had recently been someone's birthday, and [brag, hint] it will soon be mine.  But, in its own wonderful way, the Hendersonville Parkinson's dinner gathering was every bit a party. Underscored by immediate friendship and one significant common denominator, the 8 of us who gathered Monday night had fun, made new friends, renewed long lost friendships, and exchanged valuable information for battling Parkinson's [PD].

Basically a recluse,   I am finding that there's nothing better than learning from and laughing with other Parkinsonian's.   I guess I am beginning to confront aging this way. Somehow, I have managed to be the "baby" of all my favorite groups--e.g. Schmoozers at my synagogue, many of the PD groups. Name the group I attend, and I am the only one not quite on Medicare yet.  But , as the PD seems to be taking an ever-so-slight turn for the worse, I now find myself surrounded by beautiful men and women who refuse to let anything get them down.  And what's better than laughter?  One of my new friends accidentally took her husband's PD meds one night instead of her own--hilarious in retrospect since, thank G-d, she's fine now.  My story of throwing orange juice on a table of businessmen at a breakfast buffet is always a hit, even though I was humiliated at the time and embarrassed to ask for help.  I am meeting other klutzes, if you will, who also walk into door jambs and smash their hands into cabinets. More seriously, we talk about fears of dementia and conclude that, based on reality, we're all just fine. But it's scary.  Such worries start creeping in anyway as we age, and, if I can share the story about opening the dishwasher to warm a bowl of soup, then someone else has a tail of worse absent-mindedness to tell.  Then some angel in the group says the fact that we know these are silly and the fact that we worry we are losing it is a good sign. We're just fine.

But then I learned yesterday that my former captain on the Fire Department had died of "complications of Parkinson's Disease." I want to know more.  We are told--and we know all to well--that PD is progressive, but that's not enough.  So one of our goals as a group is to stay in touch with the doctors at Vanderbilt and support their research. One new friend and I discovered we are both insomniacs, so next week we are attending a function where that is the primary topic.  Despite having been started on clonazepam, I am still sleeping only a few hours a night, then zonking out later in the afternoon, often missing a critical dose of yet another med. We're all different in that respect--schedules, meds, dosages, and reactions to them.  There is not one, simple answer to our PD, but it helps to know we aren't alone and that shared information helps us formulate questions for our own doctors.

My exercise routine the last few days has been all about calisthenics. My knees hurt, and my feet feel "shuffly."  Sometimes, I consciously "march" around the house (when nobody is looking) just to practice keeping my feet off the carpet, where I worry my toes will find an invisible objects to trip over.  But someone at our group Monday night described frozen feet where a foot or the feet simply quit moving forwards.  The result of that is a fall.  Perhaps that explains my sideways falls where my left foot simply doesn't get the message that it's supposed to step to the side.  So many questions....... so many resources in a group.  I recommend finding a local PD support and/or information group.  There you will find someone who has walked a mile in your shoes, who perhaps has dumped food all over a carefully set table, who has experience with meds or with brain stimulation surgery, and there you will find a friend with whom you can learn and laugh.

Very soon I start the Lee Silverman method of speech therapy--4 days a week for a month.  This will be quite a rigorous routine, but, if there's any hope I can again scream at my students or start swallowing again, I will do it--and report.  Has anyone else been through this?

Time to lift a dew weights before school. Strength work feels soooooooo good:)

I should fall so gracefully.  In my dreams.  Actually, in my dreams, I battle invading enemy forces from another era, I run fast and hide from those who want to harm me, and I jump like a cat and swing from overhead obstacles like a monkey.  But, in my awake life, I trip over invisible "objects," I lose my balance without warning, and I stumble sideways frantically trying to get the foot that's free across the other as in a ballet move to balance me before I end up on the ground.  I always thought these things happened because I am a klutz, and there's no question the derivation of "klutz."  This delightful Yiddish word was obviously introduced into Yiddish by someone who knew my great-great-great grandmother, Goldie Klutzberg. I came by this naturally. I mean who else ever got on a horse for the first time and fell off the other side?

No wonder, then, that Parkinson's [PD] crept in with a pattern of falls I assumed was klutziness.  But there was a very worrisome difference: I had spent 24 years on the Fire Department, and I had learned to be more careful of my footing--or else.  I was also running regularly and cycling, and my sense of proper footing and balance was better in my 40s than ever before.  But, early into my 50s, I started having tremors.  By 60, other symptoms were there, and THE DIAGNOSIS was Parkinson's. One thing jumped--wrong word here--out of my list of problems was the falling for no reason.  And there were the "almost falls" or staggering and not falling for distances of up to 10 yards.  I had also started

falling over from a standing position.  Most common was catching the toe of my shoe on some invisible "object" on the floor when, in actuality, the floor was perfectly smooth and held absolutely no tripping hazard.  But, when there were tripping hazards, I invariably misjudged them or--as I suspected--they reached up and made me trip.

As cruel fate would have it, my body started this downward spiral about the same time my really old parents started theirs. Then I was working as a fire investigator for the Nashville Fire Department, and it was my job way too often to investigate  fatalities.  We had approximately 25 a year; the very old and the very young were disproportionately represented in that statistic.  Not being comfortable around "the very young," I had made it my mission to take everything I knew about fires (a lot), building construction (a lot), and human behavior in fire (also a lot) and go out into neighborhoods to help save the elderly. What I didn't know was that they weren't afraid of fire--they were afraid of falling.

Now I am the one who is afraid of falling.  So I have developed some of my own tricks to keep that from happening--hopefully. These are my short and simple DOs and DON'Ts:

• Keep exercising your legs so that you can pick your feet up more than usual when stepping over a visible obstacle.  You can even sit in a chair and march, lifting your knees as high as possible. I often walk with an exaggerated step on days I just don't feel right and fear falling the most.
• Walk using your arms for balance. That means swinging them.  If you aren't swinging your arms, consult with a physical therapist who knows PD patients.
• Under no circumstances do 2 things at once. Don't walk back from the mailbox and read the mail at the same time. Don't turn and talk to the person next to you. When you're walking, WALK.
• Never pivot.  We aren't ballet dancers or cats. Stopping and turning on a dime are not in our repertoire of graceful movements.  If you need to turn around quickly, make a circle.
• Walk at a comfortable pace for you, not for those with you. Wear shoes that don't grip surfaces like carpet, decking, or pavement.  If there's a railing, hold it.
• Keep the space you have control over free of obstacles.  Dogs, cats, and children can be taught to respect your fall potential.  All of our animals respond to a firm "MOVE," and I remember that I was taught at a very young age that my Grandmother, who lived with us, fell easily.  I was responsible for removing hazards and knowing what to do if we were alone.
• Door thresholds and weather stripping exist for one purpose only: to trip us. Watch for them, and learn to high step over them.
• Interior and exterior stairs are required by the model codes to be consistent. If someone you love dearly has porch steps whose risers vary from 6" to 8" or worse, tell them they're a hazard and a code violation.  If you want to be nice--don't we all--then just be prepared to make those exaggerated steps.
• If your body and soul are telling you, "this is a bad PD day," then listen.  Pay attention to your inner voice that says "REST TODAY."

And that is exactly what my body is telling me.  Two PD events are on my calendar, and they promise to be interesting and informative.