Too old to be young and too young to be old

One lovely spring day in the kindergarten, many years ago, a young boy was showing me how he could do all sorts of tricks on the swings. After each trick, he would ask, “Can you do this, Mrs. Reinhart?” I finally told him no, I was too old. His reply? “It's okay! You can do it when you're younger.” It was as simple as that.

If only age would continue to be so simple.

The other night, my husband and I attended a lovely gathering in support of the Parkinson's Association of the Rockies. At one point in the evening, a lovely young woman, Katie Strittmatter,  spoke about the new group for people with Young Onset Parkinson's disease. She described the need to have something different for these younger folks with Parkinson's as their challenges are much different than those who are diagnosed later in life.

I found myself wondering: what are the rules here? Some official websites list age 50 as the cut-off. If you are diagnosed before age 50, you are Young Onset PD, after 50, it's just plain old PD. Another website listed the age cut-off at 40.  Now it gets even more complicated.

I was diagnosed at age 49.  Am I young or old? Young Onset refers, of course, to when our symptoms began and when we were diagnosed. Do we keep that designation even when we are getting too old to be considered young?

There are different challenges, depending on whether you are old or young. My father was diagnosed in his 80's. I had to step in and insist he be treated for his Parkinson's. His doctor seemed to think my dad was about to die anyway, so why worry? I informed his doc that my father's family tends to live long lives.  My grandmother lived to be 97 and her brother lived to be 101. My dad insists he has maybe 20 good years left.  He'll be 89 next month.

For the Young Onset crowd, it is challenging to deal with PD symptoms while trying to manage a job and caring for a family. Being on the medications for more years adds up to a greater risk of having to put up with the more annoying, or even disturbing, effects of these drugs. Young folk need to stay as active as possible because their lives are still very demanding.

I'm sort of in the middle now. My kids are grown, but I have very young grandchildren and my elderly parents to look after from time to time. I'm retired, but I want to stay as active as I possibly can as long as I can. I have things to do and places to go. Katie has invited me to come to the Young Onset PD support group. They don't just sit around and talk about their challenges, they do stuff. They go bowling and do other cool things. I figure I'll try it out while I'm still young enough to join in.

After all, I only have maybe 40 good years left.

You can find information about support groups, exercise programs, and much more at:

The Parkinson Association of the Rockies

Eating well - finally

There wasn't much I could eat for dinner, so I had a spoonful of almond butter, a couple of carrots from our garden, half an avocado, and some salad without dressing. I glared at my family, graciously, as they ate their spaghetti, and lettuce dripping with raspberry vinaigrette.  I was coping quite well until my husband brought out the Moose Tracks ice cream.

It wasn't fair.

Three months ago I decided to watch my diet. What I saw was a lot of carbohydrates and sugary stuff. There was a decent amount of good food, too, but the carbs and sweets side of the scale was a wee bit out of balance.  And so was I.  I hadn't been feeling too good.

It seems eating sugar, lots of sugar, will release dopamine. Cool. Instead of upping my meds, I could just have some fudge or ice cream or a Snickers bar.  It worked quite well. My doctor hasn't insisted on an increase in my medication for the last several years. 

When others have suggested special diets to me, I only half listened. Like all helpful remedies and cure-alls, I know what works for one person won't work for everyone.  If standing on one leg for an hour a day makes you feel better, go for it.  I'll pass.  I've been told to drink wheat grass juice, go vegetarian, stay away from gluten and carbs, don't forget aerobic exercising, don't eat protein after 3 pm, and have I ever heard of the Paleo diet? 

Outside I may be smiling and nodding, but inside I'm saying, “I don't HEAR you.”

Until three months ago. Only, it wasn't anyone else telling me I had to change, it was my own body. Every time I said, “I don't hear you,” I would be knocked on the side of my head.  It was getting tiring and my head hurt.  Eventually, I was too tired to do much of anything. My blood pressure had gone up, my tummy ached, and my sinuses burned all the time.  The docs couldn't find anything really wrong, so they blamed my Parkinson's.  I get it. I do the same thing.

I was miserable enough to try anything.  Throwing all my diet and health suggestions into the air, I came up with the following:

No sugar

No gluten

No carbohydrates

No dairy

I would eat meat, lots of vegetables, some fruit, almonds, and walnuts. Actually, the choice was made consciously.  My symptoms started to sound more and more like systemic yeast issues.  It wouldn't hurt to try the yeast diet. I decided to try it for a few weeks then gradually add other foods back in.

Within 48 hrs, I felt good. The symptoms went away, I had energy, and my blood pressure was down to my normal.  I wasn't hungry and I didn't crave sugar.  COOL!  I can do this!

Then, of course, my dear husband brought home the Moose Tracks ice cream. 

I was not led into temptation, but held my ground and ate a few almonds.  It's been three months now and I still feel good.  I've lost 15 pounds, too.  I'm starting to add in a few foods and have, only on occasion, splurged with a small bowl of ice cream.  Granted, there was the day I ate a full bag of chocolate chips. Life can be stressful and chocolate helps.  I don't make it a habit.

This has been a good wake up call for me and I know I have to pay more attention to having a healthy diet. My body has shown me exactly how it will react when it is off balance. I've gotta listen to what it's telling me.

I'm not going to try and convince people with Parkinson's to change their diet. It's not a cure-all.  I still have Parkinson's.  In fact, some of my symptoms actually have gotten worse since I cut out all the sugar.  My body is missing the extra dopamine.

It's okay, though.  I'm feeling good.  If my PD symptoms get much worse, I suppose I could increase my medications.  Until then, I'm okay. 

After all, how normal do I have to be?

TravelScooting: the first adventure

July 18, 2013

It was the day.  After some busy weeks, I took a personal/mental health day and rode my new TravelScoot to the bus stop and took the bus downtown.  I planned on spending the entire day shopping, exploring, and generally having fun riding my new scooter.

A few weeks before, I had taken our daughter to a large shopping mall to look for a dress.  As this was in my pre-TravelScoot days, I was walking.  I'm afraid I didn't last long before informing our daughter of her choices:  either we go home or she had to give me a piggy back ride.  We went home.

This trip would be different.  I had a TravelScoot.  I had dreamed of owning one of these incredible machines.  It's like a sports car. Invented in Germany, it's the Porsche of mobility scooters.  It's built for durability, ease of use, and speed.  Okay, I added the last one.  I'm not sure speed was one of the goals; I just happen to enjoy it. 

There are a few things one must know about these scooters.  They're not for everyone.  You have to be able to walk somewhat and balance.  The simplicity of this machine appealed to me.   To go backwards, you have to push with your feet.  It has hand brakes.  If you don't remember to apply the brakes, you will coast.  To me, this means fewer things to go wrong.  This is one scooter where reading the instructions completely and following them religiously is essential. It's not difficult, but important.  Thank you to Tony at TravelScoot USA for all your help!

The first test was riding the bus.  With most scooters, trying to park in the space allowed is a little like trying to parallel park an SUV on a street crowded with other vehicles and pedestrians.  Everyone is waiting for you and watching you as you inch forward and get stuck in your attempt to hurry.  In comparison, the TravelScoot was like parking a child's tricycle in a large space.  I was able to put the bus seat up by myself, maneuver into position using my feet to help, and was ready before the driver had the lift back in place and the door closed.

Getting out at the 16th Street Mall, I had a wonderful sense of freedom!  I could go anywhere and do anything I wanted to do!  I zipped up and down the sidewalks.  Getting there early enough, there weren't many people about the mall, so I sailed around town.  I had tea, got a haircut, and went to a few stores.  The TravelScoot was able to maneuver through large stores as well as tiny gift shops.  Some of the older shops have a step at the front door. No problem!  It was easy to put my feet down and lift the front wheel up the step, push a little forward, and repeat for the back wheels. No way could I have done it with a heavier scooter.

After zipping around town, I went back to the bus stop to wait for the bus. It was getting very hot by that time and sitting in one place was not pleasant.  It took seconds for me to decide to try taking the TravelScoot home without the bus!  Turning aside, I found the pedestrian bridge over the highway.  Halfway over the bridge, I had the incredible urge to take off my hat, swing it around, and give a loud WHOOP for joy!  I was seeing all sorts of new places in town and having a wonderful time!

The entire journey, from downtown to our house in Wheat Ridge, would have been about 4 1/2 miles.  I went almost 3 miles of this on the TravelScoot, going through the shopping discricts of LoDo (lower downtown), LoHi (Lower Highlands), and Highlands before getting back on the bus for the last leg of my journey.  Tired, but happy, I came back home and rested for awhile.  I don't think I stopped smiling for hours.

Owning a TravelScoot would have remained a dream, but for the kindness and generosity of a dear cousin from Europe.  He decided it would be a good way for me to be more independent.  How does one repay a gift like this?  It's not possible.  I can only be grateful and try to show kindness and generosity to others whenever and however I am able. 

And have many more adventures! 

www.travelscoot.com

Pain Management without Pain Medication

"Are you sure you don't want me to prescribe some pain medication?” The emergency room doctor looked at me in disbelief. I doubt he often has people refuse this offer.

I was in the hospital last Friday afternoon with severe neck and face pain. It doesn't seem to be anything serious, more than likely a combination of my dystonia, being at the dentist for a check-up, and perhaps a type of migraine that hits in the area of the carotid artery, right behind the ear. There's nothing to do now, but wait to see if it goes away or gets worse, and manage the pain.

I'm a medication wimp. Side effects are me. It's not only medications, either. I envy people who can drink a couple glasses of wine without feeling ill or smoke a joint and get that nice, “ooh, life is good..” sort of feeling. I have a tiny bit of medical marijuana and I get that, “ooh, the room is spinning and I feel like throwing up..” sort of feeling. Prescription meds aren't much better. Past experience with pain meds have led me to expect one of three different responses:

1. I will puke my guts out until I am severely dehydrated and end up in the E.R., in much worse pain.

2. My pain will go away, but my breathing is depressed. I'll lie on the couch, not able to move or speak, or sleep, while my breathing becomes shallower and shallower till finally I stop breathing altogether for 30 seconds or so. That's when I suddenly gasp for air in a panic and the process starts all over again...over and over and over.

3. Once in awhile I get lucky and it works, without causing any puking or breathing problems. I will only try this if I'm at the hospital and being monitored. Otherwise, it's not worth the risk

This means I've had plenty of times when I've had to practice pain management without any medications at all. After this last episode, a friend asked if I would share some of the techniques which have worked for me. I don't guarantee they will work for anyone else. Everyone's systems are unique and there isn't an easy answer, but this is what I do:

For chronic pain and to prevent acute episodes:

1. Drink water. Unless I'm puking my guts out, I try and drink as much as I can. Being dehydrated makes pain worse.

2. Yoga. My dystonia can twist me into positions that are not normal for the human body. If I'm already twisting into weird positions consciously, my body doesn't rebel as much with the dystonia.

3. Exercise. Walking is difficult for me, but dancing is delightful. If I'm sitting and working on my computer, I get up and stretch often.

4. Laughter. For me, this means being with real people, family and friends, chatting, telling jokes, sharing funny stories, and laughing at my challenges. It also means writing funny stories and sharing them in this journal, and coercing family and friends into reading them.

5. Massage therapy. Whenever I can afford it. When I can't afford it, I hope to see the “free 5 minute chair massage” sign at the Farmer's market.

6. Balance. Get out of the house. Do housework. Rest. Don't plan more than I can comfortably do without becoming fatigued. Say no when I need to say no.

Okay, I'll admit it. The last one is impossible for me. I've tried. Well... okay...honestly? I haven't tried. My philosophy has been, “If I do this now, I'll be useless later, but if I don't do this now, I'll feel useless all day.” This attitude can be somewhat good for my soul, but the physical body eventually just has to rebel. When it does, I end up exhausted and with acute pain in some form or another. One challenge is, I don't know how much activity will cause me to become exhausted. It varies.

Techniques for managing acute pain:

1. Stay away from screens – TV, computer, cell phone, e-reader. When I am not feeling well, looking at screens will make me tense up. My neck and back will become stiff, my dystonia kicks in, and my vision gets blurry. No screens. (As I love to write, this is hard for me, too.)

2. Drink water and hot tea. Drinking hot liquids helps keep the digestion going. For me, that's essential to pain management.

3. No sweets and no heavy meals. I stay away from sugar and too many carbs. Overeating, if I have any pain at all, will make me feel very ill.

4. Hot baths. This is one of the most effective ways for me to relax.

5. Rest. Rest. Rest. Sleep if possible.

When the pain gets really bad:

1. Lightly stroking the skin. A massage therapist taught me this and it is how I got through a Cesearean birth without pain medications. Any place will work, it doesn't have to be done where the pain is located. It works better if you don't go in circles (don't ask me why) but just random designs. It also works if someone else does this for me. Some people cannot tolerate this gentle touch, but for most of us, it's a simple way of releasing endorphins to help with pain.

2. Focus. This is hard to explain and I couldn't find anything written about it. This is what I've developed for myself. More than likely, someone will write to tell me what it is called; I doubt I invented anything new. I'll try to explain...

Lying down, covered warmly, I start with breathing. In yoga, I learned how to breathe in deeply and breathe out, emptying my lungs as completely as I can. It helps to count. Whatever number you count to as you breathe in, add several more numbers to your outbreath, making sure your outbreath is longer than your inbreath. This helps to calm the nervous system. No, I don't have a scientific study to back this up, but I do have a wonky nervous system that agrees with it.

As I breathe, I start to calm myself. Now, where others might tell me to go to a happy place and not think about my pain, I do just the opposite. To do this effectively, I need to know where the pain is coming from. The more I know about the exact process that's going on, the better it works.

When I know where the pain is coming from, I focus on the pain as objectively as possible. I still feel the pain, but I don't feel the panic that often comes with pain and I don't feel the need to take it away. I just contain it. I mentally let it be in whatever part of my body is hurting, and I try to allow the rest of my body to feel okay, unaffected by the pain.

It doesn't work all the time. I toss and turn and try to get comfortable. Often, though, it is when the pain is at its worst that this technique works the best for me.

Make sure you talk to your doctors about any pain you are having. They can tell if the pain you are describing is something which needs to be checked out at the office or emergency room. Then, of course, if you're not as sensitive as I am, the doc may prescribe pain medication. Take it, zone out (at home), and file this list away for another time.

Ooh, life is good!