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Tuesday, September 6, 2016

Driving Your Own Parkinson's Bus

I see Dr. Scott J. Sherman, my Parkinson's disease specialist, once or twice a year. It's not that I don't like him, I do. He has a great sense of humor and he seems to know more than most Neurologists about Parkinson's and DBS. But he's 240 miles from home, and to be honest, there is no medical reason for me to see him more often. 
Dr. Scott Sherman and YumaBev
There are 24 hours in a day, which means there are 8760 hours in a year and I spend maybe ONE of those hours with my Parkie Doc. That means my Parkinson's disease is managed by ME for the other 8759 hours or 525,540 minutes of each year.

My ONE visit with Dr Sherman in 2016
Dr. Sherman has no idea whether I am taking my medicines as he directed. He has no idea what my current DBS settings are. He has no idea what my symptoms are like, except during those few minutes that I see him. My Wonderful Husband doesn't even know exactly what I go through each day and he lives with me!  

It is up to ME to figure out what works best for ME. If the Doctor says, take this pill three times a day, it's up to me to figure out what time works best for me. Do I take it every 8 hours or perhaps 6 hour intervals will work better? Do I need the first dose as soon as I wake up, or maybe I don't need it for several hours? Maybe taking that last dose right before bedtime makes it more difficult to go to sleep or maybe I need to set an alarm and have a dose and a glass of water on my nightstand. Maybe I only need two a day and not three or maybe I need really four. I'm the only one who can figure this out. 
These were my settings a year ago!
It is the same with my DBS settings. The Doc gives me parameters for a reason, so I can tweak the settings myself. Trying to figure out the best combinations of settings and medicine takes time, but if you get it right, your quality of life will improve.

Michael J. Fox has said something similar to: Living with Parkinson's is like you are standing in the street, you know a bus is coming and that you will get hit, just not when or how hard it will be.
Well, I say, "Don't just stand there waiting, jump on the bus and drive it yourself!" Take control of your disease and figure out what works best for you!    

Drive your own Parkie Bus!!!
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Thursday, August 18, 2016

Will I See YOU in Portland at the World Parkinson Congress?

The 4th World Parkinson Congress is taking place in September of 2016 in Portland, Oregon and my Wonderful Husband and I plan to attend. 

So, what is a World Parkinson Congress?

"The triennial World Parkinson Congresses provide an international forum for dialogue on the latest scientific discoveries, medical practices, and caregiver initiatives related to Parkinson’s disease.
Each Congress brings together physicians, neuroscientists, a broad range of other health professionals, care partners, and people with PD (PwPs) for a unique and inspiring experience. Cross pollinating members of the community is important in the effort to expedite the discovery of a cure and cultivate best treatment practices for this devastating disease." 

You can learn more or register to attend at

Why am I going? For two reasons. 
1. To get a chance to meet, in person, so many Parkies from around the world that I have interacted with online via chat-rooms, Twitter, Facebook & email.
2. To get to speak to and ask questions of researchers and top Parkinson's disease specialists without feeling like I am bothering them. Maybe some will actually have answers. 

I was supposed to attend the last one in Montreal back in 2013, but between all the surgeries, breast cancer and depression, it just didn't work out. It's okay though, because Portland, Oregon is a lot closer than Montreal and I won't have to speak French. (Je ne parle pas bien l'anglais quelques jours!)

Travel to Portland also means I don't have to fly, we can drive. It's not that I am afraid to fly; it's just more comfortable for me to travel by car. Besides, there are places we'd like to see en route and back. We plan to go there through Nevada and the Columbia River Gorge and return via the coastlines of Oregon and California.  

The Congress is a multi-day event, with multiple sessions going on at the same time, so there's bound to be something interesting to do each day. If not, I can always hang out in the Book Nook (where my Parkinson's Humor book will be available), visit with Parkies in the Renewal Room or do some sight seeing.

If you are reading this, and will also be attending, I look forward to meeting you in person. Send me an email at so we can get to know each other ahead of time. See YOU in PORTLAND! 

YumaBev is ready for a Parkie Party in Portland! 

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Thursday, July 7, 2016

Financial Exploitation: Don't Become a Victim

It usually starts with a fender bender. You misjudged how far away the pole in the handicap parking space was and now there's a small dent in your front bumper. You're embarrassed, so you tell no one, not your family, not even the insurance company. It could happen to anyone, you say to yourself.

Then you bump into the front garage wall as you are parking. I was distracted; you say to yourself, I'll put down a brick to remind me where to stop. That will fix the problem. 

The next time you are on your way to the store, you almost get hit because you forgot to look both ways at that STOP sign near your house. Now, you get nervous every time you have to drive somewhere, so you start limiting your outings and take more back roads.

At your next Doctors visit, the Doc asks about your driving abilities and you say, I don't go out much. The Doc says, maybe it's time to give up driving? You say, you'll think about it. 

But how will you get to the store? Your children live elsewhere or are busy with their own lives, plus you don't want them to think you are old and feeble. You don't want to impose on friends or neighbors; so you look at the ads on the community bulletin board outside the grocery store. And boom, she has you. You are about to be financially exploited and you don't even have a clue.     

The first thing she does is try to be extra friendly. She will ask about your children, how often they come over, do they live nearby. The less they see of you, the happier she will be. She'll tell you about her family and how she took care of her Grandma or Grandpa and that's why she enjoys helping older people. She'll disable your car when you aren't looking, by pulling a wire or disconnecting the battery cable. When it won't start, she will say, don't worry about getting it fixed; I'll drive you anyplace you want to go.  

Soon, she will be calling you Grandpa or Auntie when you are out in public. She wants the checker at the grocery store and the bank teller to think she's family. Then she will start making snide comments about how little your own children care about you. 

She'll recommend people that she knows to cut your hair, mow your lawn or fix your leaky toilet. She'll distance you from everyone you used to know. Soon, every person you see is a friend of hers. She has slowly taken control of your life and you don't even realize it.

She may tell you that she knows a "better Doctor" for you to see. She'll help you fill out the forms, now she has your date of birth and social security number. She innocently says, why don't you put me down as your emergency contact? Your kids are too busy to deal with your problems, but I will always be here for you.

Then she'll take over dispensing your medicines, and add in a bunch of "vitamins." When you complain about feeling wobbly or confused, she'll offer to help you more and more. She may offer to move in to your home in case you fall at night.

Then she'll start complaining about how she is losing money from her other clients because she spends so much time with her favorite, you. She'll ask if she can borrow some money from you to pay her electric bill. Next it will be her rent. Then one of her children will be in an accident, and of course, she has no insurance. Then her car will need repairs and she can't use yours because it doesn't start. Soon you'll be giving her more and more. What other choice do you have? You need her, she has seen to that. Your address book has mysteriously disappeared and all the phone numbers on speed dial somehow got erased. 

She'll warn you not to answer the phone when she's not there. She'll say there are bad people out to get you or her. She doesn't want you blabbing to friends or family about her, so she'll tell you to keep your friendship a secret.  

She'll offer to get your mail, and help you write out checks. She'll bring her family over, and things will go missing. If you notice, she'll say it got broken or she'll say, don't you remember giving that to my son for his birthday? 

She will target the accounts that are in your name only. She's afraid to touch the others because she can't be sure the other person listed isn't getting duplicate statements. During inclement weather, she'll offer to go to the store or bank for you. She will tell the clerk, its okay, I'm family and you aren't feeling well. 

She will offer to update the info on your bank accounts, life insurance policies and everything else she can think of. She will make sure you are confused, and ask you to sign blank forms. Then she will change the beneficiary to her name. She's a master thief. 

If you are lucky, she'll disappear when everything is gone. If you aren't lucky, she may figure out a way for you to accidentally slip and drown in your bathtub.

Please, don't become a victim. If you live by yourself and need help, get it through an accredited agency. Let your family members know what is going on. Add a second trusted person to all your financial accounts and ask the companies to send duplicate statements to the other person. Ask your friends and neighbors for help. Most will be glad to drive you to the store or Doctors office. If you are embarrassed to ask, think of how much more embarrassed you will be when every penny you had is gone? These criminals know who to target.   

I know exactly how these thieves work because my Dad was a victim. She did all of the above. When I confronted her, she bragged about how she'd done it before and gotten away with it. The only financial account she didn't touch was the one with MY name on it. My Dad had added my name after my Mom died. Nothing she took was recovered, by the time I figured out everything she'd done, she had disappeared. My Dad was too confused to remember whether he had signed stuff or not and without his testimony, there was nothing that could be done. I used she in my story, but there are men thieves out there, too.

How did I know something was wrong? My Dad offered to fly out to visit me. She did not want me coming back home. She didn't know that my Dad absolutely hated to fly. As soon as he suggested it, I knew something was terribly wrong. 

If you suspect a family member, neighbor, or even one of your customers is being exploited, please REPORT IT! Search for "Adult Protective Services" or "Elder Abuse" online and make a phone call. In most cases, you can remain anonymous. You may save someone's dignity and maybe their life. 

Afterwards, I had bank tellers, neighbors and grocery store clerks tell me they thought something strange was going on. One bank teller told his supervisor about his suspicions, but no one reported it. Don't become a victim. Let's all watch out for each other. 

Monday, June 20, 2016

An Interesting Surprise for Father's Day

My Wonderful Husband and I had just finished eating our breakfast yesterday morning, which was Father's Day here in the USA. I had my usual bowl of cereal and he had eggs and toast. As I was washing the dishes, a strange site greeted me. I saw THIS as I looked out through the kitchen window blinds.

What is it?
Is that a snake in the middle of our street? Or something else? I kept looking as I finished the dishes. A car came around the corner and suddenly stopped. The object was right in front of the car and never moved. I thought they were going to get out but they just looked at my neighbors cacti in bloom and then drove off. I was surprised they did not run over it, whatever "it" was.

Curiosity got the best of me, I had to go look and, of course, I brought my camera and a broomstick with me. It WAS a snake and it was dead. Good thing, because it was a western diamondback rattlesnake! I snapped a quick photo and then decided to move it out of the street, before we both got run over. I used the broomstick, I may be a bit crazy, but I'm not insane. I'm not going to touch a rattlesnake, not even a dead one. 

I've always been sort of a tomboy and am quite curious about all sorts of critters. Once I got it out of the street, I could take a closer look. I have no idea how it died. It was not squashed, so it hadn't been run over. Maybe a roadrunner got it (yes, roadrunners will kill snakes.)   

Roadrunner looking for food
So, how did I know what kind of snake it was? I looked at the tail. See those black and white rings just above the rattles? Those are the markings of a western diamondback. They are quite common in Arizona, although this is the first one I've seen in at least 10 years. 

I measured it and it was just over 2 feet long. They can be as long as 7 feet. After I took photos, I made sure it was out of the way, so any curious children wouldn't find it and came back inside to work on this story.

I went back out this morning to see if it was still there, and there was nothing left, except some scales and the rattles. I don't know what happened to the rest of it. Perhaps an animal hauled it off over night, or maybe an early morning walker took it for its skin, all I know is it's gone. 

The rattles are made of keratin, they same stuff our fingernails are made of. The snakes gain a new rattle each time they shed their skin. Rattlers can shake their rattles 50 times per second and continue it for several hours! And we thought Parkinson's tremors were bad? 

I hope it's at least 10 more years before I see another one, at least one that close to home. 

Saturday, June 4, 2016

Muhammad Ali: The Fight He Could Not Win

Yesterday evening, June 3, 2016, I heard the sad news; Muhammad Ali had lost his fight with Parkinson's disease. It had been a very long bout, 32 years long. He had fought a good fight, had always maintained his dignity and he's now at peace. I'm not sure he really lost, I think I would call it a draw.

I credit the Muhammad Ali Parkinson Center in Phoenix, Arizona, for this Parkinson's Humor blog I write. I never met the man, or visited the center named after him, but the staff came to Yuma at the end of March, in 2011 and put on a two-day seminar they called PD-101. I still have my big binder.

I learned more in those two days than I ever heard from my Doctors. I first heard the term "Parkie" at that seminar and I loved it. There were several people with tee-shirts that said "Have you Hugged a Parkie Today?" This made me decide to become a Happy Parkie. 

I also found out Yuma had a support group, which I joined and now lead.

I learned that being wide awake in the middle of the night was a common medication side effect and that there were chat rooms dedicated to Parkinson's where you could talk with other Parkies. Finding one of these chat rooms changed my life. I connected with Parkies from around the world and one in Australia, Karyn, suggested I write down the funny stories I would tell in the chat room and share them online. Hence, this Parkinson's Humor blog was born. 

I actually had an appointment, once, to see a Movement Disorder Specialist (Dr. Santiago) at the Muhammad Ali Parkinson Center. It took several months to get in and my appointment was for January 6th. Unfortunately, in December, my Medicare Advantage provider decided to drop the Muhammad Ali Center from their list of in-network physicians. Without insurance coverage, I could not afford to go and cancelled my appointment. 

Thank you, Mr. Ali, for all you did to help raise awareness of Parkinson's disease, and thanks to the Center named after you for changing my life. Rest in Peace.

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Tuesday, May 31, 2016

Traveling with Parkinson's, Just Follow Your Routine?

You have everything packed and now it's time to leave on your trip. Your Doctor gives you this advice regarding traveling with Parkinson's disease, "Just follow the same routine you do at home." 

Follow my same routine? Yeah, right.

Living in Yuma, Arizona has some advantages. If you are flying, the Yuma airport has just one airline and only two gates, so getting through security takes 5 minutes or less. If you are driving, there are only three roads out; I-8 east, I-8 west and US-95 north. For our Las Vegas trip, we went north.

A LOT of desert between Yuma and everywhere else
Living in Yuma has some disadvantages, too. Once you leave Yuma heading north, the next bathroom is at least 90 minutes away in Quartzsite, Arizona. We got up at 5:30 and left at 6:30 am, so I took my thyroid pill with just a sip of water, instead of a whole glass. Routine slightly off schedule before we even left. 

Once you leave Quartzsite, then next bathroom facilities are in Parker, Arizona (40 minutes away) and then in Needles, California (75 minutes past Parker). There is a LOT of desert between Yuma and everyplace else! 

We stopped for breakfast in Needles at 10 am (pancakes, eggs and bacon.) From Needles, the next bathroom is another hour away, so I drank very little at breakfast and kept my fingers (and legs) crossed. Routine off even more.

We got into Las Vegas, Nevada about 11:30 am and got stuck in a huge traffic jam. Our daughter and grandson (The Kids) had flown to Las Vegas from Orlando, Florida the night before. The Kids call to ask where we were. Stuck in traffic, we answer. We could see the hotel from the highway, but it would take another 45 minutes to get there. We don't have ANY traffic jams in Yuma, except inside the grocery store on Senior discount day!

The Kids have a normal routine as well, and with the three hour time zone difference, we assumed their routine would coincide with ours. Wrong. Instead of going right to sleep when they arrived the night before (2 am their time), they stayed up until 4 am (7 am their time.) They had just awoken, were starving and ready to eat a big meal and we weren't hungry at all.

So, we stalled them for an hour or so and then ate. Later that evening we went to see a very humorous comedy show, walked up and down Fremont Street and then The Kids were hungry again. So we had a slice of pizza at 9 pm. We finally went to sleep at midnight. Routine completely gone, but we had a great first day (except for the traffic jam.)

On Day Two, we were up at 7 am and it was raining lightly. One of The Kids called at 10 am; she'd just woke up. The other Kid was still sleeping. Who knows when time they went to bed? The three of us had donuts at 11 am. Routine gone. 

The Kids were finally ready for a big meal at 3 pm. In the evening, we watched an Elvis type band on Fremont St and The Kids napped. They came down later and were hungry, so we had hot dogs at 10 pm. We finally went to sleep at 1 am. It was then that I realized I hadn't had a bowel movement in two days. Routine completely gone, but still having a great time. 

On Day Three, we slept until 9 am. I walked over to McD's and got some milk and oatmeal cookies. The Kids woke up at 1 pm and we went to a buffet. The Kids only had one more day here, so we grabbed our cameras and drove up to the Las Vegas Speedway.

Our Grandson went Drift Car Racing in a Camaro with a professional driver from Monaco. He had a blast and the huge grin on my Grandson's face was priceless. 
Grandson riding in Drift Race Car
We ate late, again, and went to bed about 11 pm. Routine gone, still no bowel movement, but we are having fun.

Day Four, our last full day together, came too quickly. We were up early. I did the McD's milk and cookies for breakfast again. I finally have a bowel movement. Maybe it was the oatmeal cookies? 

The Kids were up slightly earlier today and we had lunch at 1 pm. Our Grandson did a zip line from one end of Fremont Street to the other (about 4 blocks.)

Then we just sat in our room, took pictures and visited for a while. 
Grandson, YumaBev, Daughter, Wonderful Husband
Later, we got in the car and drove to the Stratosphere Hotel. My Grandson did the Sky Jump, which is like the free fall part of skydiving. We ate late again and said our goodbyes (the worst part) as The Kids had to leave for the airport very early the next morning. We got to bed after midnight. Routine completely gone.

Grandson getting ready to jump

He jumped from way up there!
I had set an alarm for 6 am and called The Kids to make sure they were up. Heck, for all I know, they may have never gone to sleep. Since we were awake, we went ahead and got ready to leave, too. We walked down together and they hopped into a cab and were gone. 
The Kids heading back home
We climbed into our car and headed back south through the desert to our home. Once again, I was mindful of just how far between bathrooms it is.

Just as we pulled into our driveway, we received texts from both Kids saying they had just landed back in Orlando (2300 miles.) Routine still gone, but who cares? 

It took about 5 days to get back on my "normal" routine. We had a wonderful visit and I'd do it all again next week. Except for the traffic jam, I definitely don't want to be in another traffic jam. Unless it's Senior discount day, of course. 

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Friday, May 27, 2016

Traveling with Parkinson's, What to Pack

Your travel reservations are confirmed and your trip is only a few days away. You are excited because you will be spending time with family or friends and seeing new things. All you need to do is figure out what to take and then pack it.

My Wonderful Husband and I travel light. We have a “Go” bag packed and in the closet by the garage door. It has almost everything needed to spend a night away from home: toothbrushes, toothpaste, deodorant, combs, shampoo, razor, flashlight and a nightlight. There is a list of items to add; hat, jackets, prescriptions, DBS remote, cell phone charger, camera and a second list of things to do before leaving home; turn off the air conditioning and the water, set the alarm. All we have to do is grab some clothes and go. This is perfect if we are driving our car and staying out for one or two nights, but if we are staying longer or flying then things become more complicated. For example:

We just returned from a 5 day/4 night trip to Las Vegas, Nevada. Our daughter and grandson flew in from Orlando to meet us there. It’s only 300 miles from Yuma, so we drove our car. All we needed was extra clothes, right? No, because we’d be gone for five days, I had to bring extra batteries for both the DBS remote and my camera, the original pill bottles and the pill splitter. 

The DBS remote goes through batteries like crazy, so I purchased rechargeable ones and found a charger that can charge both AAA (for DBS remote) and AA size (camera & flashlight) at the same time.  

Packing these is the easy part; just toss them in the bag. It’s what to do with them once you get there that is the problem. At least for me it is.

I carry a small fanny-pack type purse. It’s barely big enough for car keys, ID’s, cash, credit cards and my cell phone. My shoulder won’t tolerate anything heavier and if my shoulder starts to hurt, I can put it around my waist. Here’s a photo of it next to a business size envelope.

See how small it is?

There’s no room for the DBS remote or my camera unless I get rid of something else. And both are larger and heavier than my keys and cell phone.

I tried to put the car keys in my jeans pocket, but the pockets in ladies clothes are worthless. It might be okay if I never sat down.

The DBS remote comes with a holder, but it’s designed to clip onto a belt and then you don’t have the antenna with you. I think the design engineers were all male.

So, what did I do? I left the car keys and DBS remote in the hotel room and squeezed the camera into my purse. Some people carry their DBS remote with them everywhere, I don’t. At home it stays in the cabinet with the pill bottles. I use a daily dose pill holder that fits easily in my purse.

I currently take 1/2 of a carbi/levodopa 25/100 mg tablet twice a day and 1 thyroid pill. I can easily fit a couple days worth into my little pill holder. However, the directions on the bottle says take a whole one 4 times a day. Why? Because of cost. The price of 90 pills (a 3-month supply) is the same as for 360 pills (a whole years worth.) My Doctor understands this and gladly writes the script this way to save me money, since I don’t have drug insurance coverage.

I keep my fingers crossed that I don’t end up in an Emergency Room and have to show them the original pill bottle. At four times my normal dose, I’d be a dyskinetic mess.

Here are a few other packing tips:

Print out a personalized info card, stating you have Parkinson’s and what symptoms YOU may have happen in an emergency. I have a large one in the glove box of our car and a smaller one in my purse/wallet, both in bright neon green, so they are easy to find.

MY emergency info sheet

Make sure you have your health insurance cards and phone numbers for all your Doctors, especially your Neurologist (including the after-hours contact info.) If you are traveling out of your home country, consider travel insurance, as your medical insurance from home may not cover you in a different country.

Take at least an extra week worth of all prescription medicines, in case you get delayed returning home. There is nothing worse than showing up at an Emergency Room because you ran out of Parkie meds. If flying, ALWAYS carry your meds in your carry-on bag, never put all of them in the checked luggage. 

If you have a cane or a walker that you use at home, even if it’s only once or twice a month, TAKE it with you. You will be staying and walking in unfamiliar surroundings and falls can be deadly. If you wear eyeglasses and have an extra pair, toss them in your bag as well, especially if without them you can't see.

Ladies...forget your vanity! Wear comfortable shoes! They make snazzy sneakers.  You will be more active than you are at home, and blisters or sprained ankles could ruin your entire trip. 

YumaBev's Sexy, Snazzy Skechers Sneakers

We have a night light and a small flashlight in our Go bag (it uses the same size rechargeable batteries as the camera.) Both come in handy when you need to go to the bathroom at night. Hotel rooms are notoriously dark and I know several who have broken a toe by not seeing that piece of furniture.

There's one more item in our Go bag; a canister of disinfecting wipes. We wipe down everything we may touch (light switches, faucet handles, curtain pull cords, TV remote, phone, door handles, etc.) I don't want to catch a cold from a previous occupant or housekeeping.

I refill our Go bag after each trip, so it's always ready for the next time. When toothpaste or deodorant gets low, I buy new ones for home and put the used ones in the bag. There's no sense carrying heavy full ones when you only need a partial one.  

Mostly, have fun, take lots of pictures and make wonderful memories, we sure did. 

Family Time in Las Vegas
A good friend says, "Just remember to pack your glasses, teeth and drugs, everything else…they sell at WalMart." 

Wednesday, May 18, 2016

Parkinson's: How Food Affects Medication Efficiency

If you have Parkinson's disease, what and when you eat may affect how well your Parkinson's medications work. 

Here's an overview of how our digestive system works. From the moment food enters your mouth and you start chewing, the process starts. Saliva containing enzymes is secreted and starts to break down the carbohydrates.

From there it heads to your stomach, where it combines with acids and pepsin and churns until it's a soft fluid goop called chyme. 

Then it goes into the first part of your small intestine, which is called the duodenum. There it mixes with enzymes from the pancreas and bile duct to break it down further. From there it slowly travels through the rest of your small intestine, which is about 20 feet long, and this is where many of the nutrients are absorbed into your bloodstream via "carriers." 

Think of this as a huge crowded train station and all these nutrients are trying to catch their particular trains: the F trains for fats, C trains for carbohydrates and P trains for proteins. The problem is the carbi/levodopa pill you swallowed also needs to catch a P train and the proteins are bigger and more pushy, so your meds get shoved to the back of the line.

Catching the right train.
Once they are on a train and on their way to your brain, they encounter the same problem. Those pushy proteins fight to get in first. This is why you may want to take your carbi/levodopa before you eat. So it doesn't have to compete with the others.    

The rest of the goop then enters the large intestine, where most of the water and vitamins are absorbed. Bacteria completes the digestion process and the rest, well, it ends up as poop! (bowel movements) 

Sometimes due to Parkinson's, the normal rhythmic motions of our digestive tract get slowed down and then constipation can be a big problem. Constipation may also be caused by dehydration, lack of physical activity and not enough fiber. So drink plenty of fluids, keep moving and add some extra fiber (bran, beans, berries, peas, greens, nuts, squash or fruit) to your diet. Just add it SLOWLY to avoid gas.   
Bran muffin
In my case, because I take so little carbi/levodopa since having DBS surgery, I do better if I take my pills right after eating. Which is best for you? You need to figure out that answer yourself. 

Who says I can't make this humorous? 

First you add a scoop
Of veggies to your soup
Then your tummy does a loop
And mixes it into a goop
From there it travels in a group
Like a tumbling acrobatic troupe
Until it exits as your poop! 

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Tuesday, May 10, 2016

Here's My Daily Routine, What's Yours?

As long as I follow a daily routine, my life with Parkinson's disease runs smoothly. This is not one of my humor stories; in fact, it's boring, but you might find it useful. 

Here's what MY typical day looks like:

7:00 am: My bladder awakens me. I stay up, because I can’t find a comfortable position if I try to go back to sleep.
8:00 am: I take my thyroid medicine with at least 8 oz water. 
9:30 am: I eat breakfast, which consists of fiber rich cereal and 1% milk.  
10:00 am: I take 1/2 of a 25/100 mg carbi/levodopa tablet with either water or juice. 
1:00 pm: We eat our main meal of the day and I drink at least 16 oz water.
3:00 pm: Nap for 30 minutes.
6:30 pm: I eat a sandwich on fiber rich bread or a salad and drink another 16 oz water.

7:30 pm: I take the other 1/2 of carbi/levodopa with water or juice.
9:30 pm: I have a snack: 1/2 an apple, or a few peanut butter filled pretzels or crackers.
11:00 pm: I go to sleep

These times vary, but not by more than 30 minutes either way.

If I take the carbi/levodopa before I eat, I get dyskinesia in both feet (watch video). 

As long as I eat my fiber rich cereal and bread, I don’t get constipated. I have a daily bowel movement, between breakfast and lunch. Keeping hydrated and extra fiber is my key to this.  

Occasionally we eat out at mid-day, but mostly we eat at home. It’s easier to reduce the sodium and fat levels if you make it yourself and my Wonderful Husband is an excellent cook!

Once a week, we have dinner out with a group of friends at 5:30 pm. On that day, my evening sandwich gets eaten around noon. Since we aren’t used to eating a large meal in the evening, and most restaurant portion sizes are huge, we often share an entree.

If a neighbor invites us over for dessert in the afternoon or evening, I skip the sandwich.

I don’t like the taste of coffee or tea. I don’t drink sodas because I don’t need the calories and caffeine makes me jittery, so I just drink water. 

On the morning of our Parkinson's Support Group meeting, I must take my Parkie meds early, so that my speech is understandable. We wait until after the meeting is over to eat (eggs, bacon, hash-browns and wheat toast), so I skip my cereal on this day. I know ahead of time I will be dyskinetic, but my only other choice is to set an alarm and get up several hours earlier and that throws the rest of my day out of sync.

Please don’t suggest that I add this or subtract that. This routine works for me. I don’t gain weight, in fact I've lost a few pounds. It keeps me regular and my medicines seem to work well. It took lots of experimentation to figure out what is best for me.

Your Doctor doesn't have time to figure these things out, it's up to you to find your own routine.  

Friday, April 15, 2016

Celebrating A Life Before Parkinson's

As the leader of our local Parkinson's Support Group, I try to attend the Memorial Services of our members who have died. So far, I've attended three and all were people with Parkinson's, not their spouse or care-partner. There have been more than three, but they either died elsewhere or didn't have a service locally. 

At our monthly meetings, I'm so busy, I don't get a chance to socialize as much as I'd like to. As a result, it's not surprising how little I know about their lives before Parkinson's, so I enjoy the Celebration of Life slide shows that are now standard in Memorial Services. It's interesting to see old photos of them working, playing with their children and grandchildren and enjoying life. They had interesting careers and accomplishments. Their friends tell humorous stories about them. And all I knew was a very small part of their life, the Parkie part. 

I was surprised to see Jon, a member of our group officiating at a service recently. I had no idea he was a retired minister and he had no idea that I knew the deceased. Jon had only recently joined our group and the deceased had stopped coming over a year ago because his disease had progressed. Jon knew the deceased son, but didn't know his Father had Parkinson's, until he was asked to do the service for them. 

The spouse probably won't remember that I was there. And that is okay; that is not why I go. I go out of respect. Respect of a life well lived. Respect that they fought Parkinson's as long as they could. I feel sad for the spouse/care-partner though. They've been taking care of their loved one 24 hours a day, 7 days a week and now it just ends. I don't feel sad for the Parkie though, because their battle is over and now they are finally at peace. 

Some spouses will come to an occasional meeting after their loss, just to say hello, but most I never see again. It's just too painful for them and I understand. 

You know, I've spent most of my adult life around retired people. Most do NOT talk about the work they did. Instead they talk about their life now and the things they enjoy now. Things such as fishing, golfing, Jeeping, quilting, crafts, card games, concerts, karaoke or travel. They hardly ever mention their children or grandchildren because they usually live elsewhere and their friends have never seen them.

Life is a series of adventures and Parkinson's was just a small part of most of these people's lives. I wonder how much it will be a part of my slide show? One thing for sure, they'll be lots of laughter at mine!