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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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." 

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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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.  

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! 

A Terrible Birthday Present, Especially for a Parkie

When I woke up on the morning of my 56th birthday, something wasn't right. My throat was kind of scratchy. I hoped it was just allergies. After all, almost every desert plant was blooming like crazy and everybody was sneezing and sniffling. But as the day went on, it became more apparent that I had received a surprise birthday present that I neither wanted nor could be returned. 

Now I understood why I was achy for the previous few days. Now I knew why my usual 20 minute nap the day before turned into two hours and didn't make me any less sleepy at my normal bedtime. Now I knew why I hadn't been all that hungry at meal times.

Someone, somewhere had given me a Darn Cold for a present. I don't know who or where. Parkinson's and Darn Colds don't like each other and I don't like either one of them! There isn't anything humorous about getting a Darn Cold, especially on my birthday! 

Fortunately, we didn't have much planned for my birthday. Just lunch out with friends. By the time we got back home, my Darn Cold was in full swing so I decided to make it a party.

My nose was running, I was sneezing and I felt awful. I didn't have a fever, thank goodness, so at least it wasn't the flu. I'm glad I got my flu shot though.  

By pure coincidence, my neighbor Jeri had dropped off a birthday present while we were out. She made a quilted tissue holder from fabric scraps. This would definitely come in handy! 

So, I dug out my Darn Cold party supplies and settled in for the duration. These parties tend to last for at least a week, sometimes longer. First, I put on my snug-fitting old tee shirt that I use with the Vicks® VapoRub™ and climbed into my snazzy pajamas. You might as well look good if you're stuck going to a party that you'd rather not attend.

Then I emptied the M&M's from my new sippy cup (another birthday gift) and filled it with juice and added an immune system enhancer tablet. 

Then I got the rest of my Darn Cold party stuff out: Pseudoephedrine for the runny nose, Guaifenesin cough syrup for the chest congestion you know is arriving soon, Honey lemon flavored cough drops and of course, the Vicks®. I keep all these items together, just in case I need them. 

Be sure to check with YOUR doctor or pharmacist to see what you should pack for your Darn Cold party.

Also, you may need extra doses of your Parkinson's medications while you are partying. 
  

My Wonderful Husband took Lysol® wipes and tried to disinfect everything I may have touched. And I tried to avoid using my hands to turn on lights or open doors. Hopefully this will be a Darn Cold party for one and maybe those Darn Cold viruses will get bored and leave early. In the meantime, I'll enjoy the M&M's, because everyone knows you can't have a party without chocolate! 

A Parkinson's Symposium in Yuma

The APDA Power over Parkinson's symposium in my hometown of Yuma, Arizona, had been in the planning stages for months. A suitable venue had been booked. Email invitations had been sent out. Flyers were printed and handed out at our support group meeting. Members took extra flyers and posted them in their Doctors offices and in the clubhouses where they lived. The Yuma Sun newspaper ran a detailed story about it on the top of page A2 and continued to run a smaller notice in the "What's Going On" section every day. Public radio station KAWC ran a PSA about it. RSVP's were rolling in like crazy.

Everything was going great, until the day of the event. Two Parkinson's Specialists from Tucson would share their expertise with the Yuma medical community at a "professional lunch" event prior to the public event. I had provided a long list of area physician groups, neurologists, clinics, rehab places and even the Professors of the Nursing and EMT programs at the college to the APDA. Space had been reserved at a restaurant near the hospital. Lunch would be provided free. Everyone on the list was contacted and invited to attend. Guess what? Only FIVE responded! An endocrinologist and 4 non-medical staff from the rehab hospital. 

I live in this town. I know these medical offices close for lunch. The restaurant was near to their offices and yet, none of them wanted to learn anything NEW about Parkinson's. I felt bad for the visiting Parkinson's specialists, but we had a nice visit over lunch. Doctors are normal people when not at work, they tease, laugh and tell jokes! And then it was on to the public event.        

By the time we got to the venue, the parking lot was full and we had to park half a block away. All 150 seats were taken and the staff scrounged up some more chairs and squeezed them in around the perimeter of the room. 

Dr. Kathryn Bradley spoke first. She went to the University of Arizona Medical School in Tucson and did her Movement Disorder Residency at Vanderbilt University in Nashville, Tennessee, before returning to Tucson to work at the Center for Neurosciences. She gave an easy to understand presentation and answered lots of questions. 

Dr. Bradley

After a short break, Dr. Thomas Norton spoke. Dr. Norton is the neurosurgeon who did my DBS surgery and has worked at the Center for Neurosciences in Tucson since 1973. His presentation was a bit more technical, but after all, you can't make talking about drilling holes into peoples skulls humorous, can you? Well, I probably could!

He answered questions and then he got asked the one question that comes up at every Parkinson's seminar I've attended: What about medical marijuana?  

His answer was the same as all the others who've been asked. He's heard anecdotal stories, from patients, that it helps them with tremor, rigidity, pain and sleep issues, but that there hasn't been much clinical research done on it.

I spoke last. I told the people about our support group and that I had some of my Parkinson's Humor books for sale and it was over. The Docs headed back to Tucson and I came home and wrote this story. 

PS: Why isn't more research done on marijuana?
Even though use of it, either for medicinal or recreational purposes is legal in some US States, it is still illegal FEDERALLY. 

Why is this? Back in 1970, the US Government decided that marijuana (cannabis) should be declared a Schedule I substance. This classification means that it has a high potential for abuse and no accepted medical use. Because of this classification, the researchers don't want their grant monies rescinded, or face federal fines, so not much research is done. Getting the classification changed is unlikely any time soon, though researchers have been trying since 1972.

FYI: Here in Arizona, medical marijuana is legal with a State issued ID card, however, if you drive through a US Customs & Border Patrol check-point (they are on all the roads near the southern border) and they find your medical marijuana, they will confiscate it, because they are a Federal agency. 

YumaBev and Dr. Thomas Norton

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Disability Review: Do You STILL Have Parkinson's?

The last job I had was back in 2003. My step-daughter got me a job as a banquet server at the country club where she worked. If it hadn't been for her, they'd have fired me the first day. My hands shook too much to carry trays of food, pour wine or even refill the guests water glasses. I was a glorified busboy and not even good at that. I quit, much to their relief, after about three months.

I had given up trying to work in banking or do any kind of office work the year before. I could no longer write, my right hand couldn't use a computer mouse, and the pain in my upper back from trying to use my right hand was excruciating. As much as I wanted to work, I was physically unable to. I would have applied for disability benefits back then, but was told, "No diagnosis, no disability."

So, I kept going from Doctor to Doctor and finally applied for Social Security Disability on the same day my Parkinson's disease diagnosis was confirmed, September 11, 2007. My Wonderful Husband filled out pages and pages of forms because my writing was illegible. Medical records were requested from all the Doctors I'd seen since 1999, when my motor symptoms began to interfere with my ability to work. 

Stress makes Parkinson's symptoms worse and there is nothing more stressful than dealing with government agencies. We filled out all their forms, attached copies of all the medical records I could get my hands on, and waited.

The first denial letter came, with instructions on how to appeal their decision. We appealed, added more medical records, statements from past employers and waited. The second denial letter came, with instructions on how to appeal for a judicial hearing. I contacted an attorney and appealed, and waited. My hearing before a judge finally happened in April of 2009, and the judge ruled in my favor. She was friends with former US Attorney General Janet Reno, and had watched her Parkinson's symptoms progress, so she understood the disease. This is the end of the story, right? Wrong.

In February of 2012, I get my first Disability Update Report form. They want to make sure I am still disabled. They want to know if I am better or worse, and want me to list ALL the medical appointments I've had for the previous two years. More stress. Fortunately, I have a file with all my medical records in it, so by the time all my appointments had been listed, there were 27 of them. A few weeks later, I received a "We've decided that we don't need to review your medical records as this time" letter.

In October of 2014, the second Disability Update Report form comes in the mail. It is a carbon copy of the first one. We learned after the first one to keep all my appointments recorded on a computer file. Having easy access to a list reduces the stress for both of us. This time, we list 50 appointments and 7 surgeries. A few weeks later, I get the "no medical review will be necessary" letter. It's pretty obvious, I am NOT getting better and will NOT get better in the future.

Parkinson's is on Social Security's official list of disabling conditions considered severe enough to qualify someone for disability benefits. "Parkinsonian syndrome with the following signs: Significant rigidity, bradykinesia, or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station." Maybe someone should also inform Social Security that Parkinson's is a chronic, progressive and degenerative disease with no cure.

I am writing this story to help all the others with Parkinson's disease who are receiving Social Security Disability benefits. You will most likely receive these Update Forms every few years, so start keeping a list of ALL your medical appointments to reduce your stress. 

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Partners in Parkinson's

Yesterday, Jan 30, 2016, my Wonderful Husband and I got up at 4:20 am, left our home in Yuma, Arizona at 5 am and drove 185 miles (300 km) to attend the Partners in Parkinson's event in Phoenix. 

We have been to many Parkinson's disease conferences over the years and have even helped plan some in our own hometown, so why get up early and drive so far to attend yet another one? This event was being sponsored by the Michael J. Fox Foundation and I wanted to see if it would be different. I was also hoping to see some Parkie friends.

When we got inside, one of the first people I saw was Carl Ames. He was staffing the Davis Phinney info table. As I looked around, I noticed there were no pharma or Medtronic tables. The info tables were for PD foundations, speech, occupational and physical therapy providers, exercise & wellness programs, research facilities and other resources for Parkies. 

We got checked in, got some breakfast and went to find a seat. The place was packed. They announced later that this event had the highest attendance so far, over 1100 people!

The event started with a moderator, Dave Iverson, a nationally known journalist who has Parkinson's himself. He interviewed three local people with

Parkinson's on how & when they got diagnosed, and how Parkinson's has changed their lives since. One of them was Brian Baehr, who I met several years ago, at a Davis Phinney event. Brian believes that exercise and challenging himself has helped him a lot. Another one was Jean Burns, a humor blogger like myself, and an ambassador of the upcoming World Parkinson's Congress in Portland, Oregon (Sept. 20-23, 2016.) I met Jean several years ago as well. The third person was new to me, but like Jean and Brian, refused to let Parkinson's beat him. The audience members were encouraged to write down questions for them. 

The next session was a re-enactment of an appointment with a Movement Disorder Specialist using a recently diagnosed man, his wife and a Phoenix area physician named Holly Shill, MD. Since many people with Parkinson's are treated by their primary care physician or a general neurologist, this session gave some insight as to why seeing a Parkinson's specialist could be beneficial. A short break was taken after and many people went up to speak to Dr. Shill. I introduced myself to her and was surprised when she said "I've heard about you from my patients."

The next session was Dave interviewing three people directly involved in research. We learned about potential new therapies in development and some trials that ended in failure (CoQ10 and Glutathione.) They all stated the known fact that so far, there is nothing out there that can slow down, stop or cure the disease and warned people not to be exploited by hucksters proclaiming a cure. Many clinical trials end abruptly because the people taking the placebo (sugar pill) show the same or more improvement than the ones who actually get the therapy being tested . Why is this? It is because just thinking that something will work, can cause your brain to produce more dopamine. This extra boost can make it seem like it is working, but unfortunately, the effect doesn't last. 

The event had a very patient centered format. There we no physicians using big fancy words, no complicated slides designed to impress other physicians. Just a Parkie interviewing people who answered in terms everyone there could understand. They weren't pushing drug A or a particular surgical intervention. They talked about all the various choices of symptomatic relief, but just in general terms. In my opinion, Dave Iverson did an excellent job of moderating this event. He asked the kinds of questions that I myself might ask if I was ever given the chance to speak to these type experts.  

They provided us with a tasty lunch and because of the long drive home, we left right after the next session, which was how to go about getting a team together to help you navigate this journey. On our way out, we saw Mick. Mick met us in the hospital cafeteria the day before my DBS surgery back in 2012. Mick &  I have been online friends for years, but rarely see each other in person, except at Parkie events. It was nice to see him looking so well. 

I gave out a few cards promoting this blog, and we headed back to Yuma. We got home just before dark. If there is a Partners in Parkinson's event near you, do yourself a favor and go. You might learn something, meet some nice people or find a new Doctor. If you go, be sure to tell Dave Iverson that YumaBev says hi.  

Clicking on the colored words will open a new window and take you to a different story or website. 

   

Gimme, Gimme, Gimme

As I sit at my computer desk, (yes, I still happily use a desktop PC, complete with a wired mouse and keyboard) trying to come up with an end of 2015 blog story, an email pops up from a Parkinson's Disease non-profit asking for a last minute, end of the year "tax deductible" donation to keep them afloat. Every few hours, for the last few weeks, they pop up. Some from newly created Parkinson's groups I've never even heard of. 

As much as I'd like to be able to donate, the reality is "tax-deductible" means nothing to me. My income is so low, I'm not required to file tax returns, but must anyway to renew my Arizona Property Tax Exemption for Disabled Individuals. 

Some state legislator said, "Let's make people who are disabled, some cognitively impaired, complete both Federal and State Tax forms, with the bottom lines often being negative numbers, just to prove they don't have huge incomes, so they can save a few hundred dollars on their property taxes each year." Who says the government has no sense of humor? 

Sorry, my mind tends to wander. This explains why I head to the kitchen to eat breakfast and end up picking long blonde hairs up off the area rug instead. Okay, where was I? Oh, yeah, working on a story. Ding! There's another email. 

Maybe I should write about all these non-profits. It seems to me there are way too many of them, all competing for a limited amount of funds. Before you start shouting at me, I don't have anything against groups advocating for Parkinson's. But do we really NEED several dozen of them? All paying salaries for management and staff. Many duplicating the same things the others do. To be honest, I don't know why many of them were created. Ding! Another email. 

I'm pretty sure I know WHY Michael J. Fox started his own foundation. He wants a CURE and is willing to use his clout to help fund research. I also know why the lobbying group PAN was formed. To push the Parkinson's "agenda" to Congress and occasionally succeed. Though no matter how many letters and emails I sent to MY so-called representatives, I always got the same "Party-line" response back from them. Congress is only interested in getting re-elected and keeping their big-money donors happy. So unless they are personally impacted by Parkinson's, they don't really care about those of us living with it. Ding! Another email.       

Every year, I get invited to attend the PAN forum in Washington D.C. The registration fee is $300 and that doesn't include travel costs and hotels! That's almost half my monthly income. I also get invited to PAN's Morris K Udall dinner, which is even more expensive. 

Speaking of food, I'm hungry. Did I eat breakfast? Oh, look, there's a dust bunny hiding under my desk. Ding! Another email. 

Oops, sorry. I got distracted again. Back to my story. I've attended several Parkinson's conferences over the years, sponsored by various non-profits. The one I enjoyed the most was the Davis Phinney Victory Summit, they focus on LIVING with Parkinson's. 

Davis Phinney

I helped set up a half-day conference here in Yuma (with Medtronic as a sponsor) and got my favorite Doctors to come speak. But, after you've been to a couple of Parkinson's conferences, they get boring. The only part of them I enjoy is meeting others with PD whom I've only met online. But due to the format of these conferences, you don't have ANY time to socialize. Ding! Another email.

I have a little bit of extra money saved, so who should I give it to? I've already "Paid it Forward" at the Davis Phinney Victory Summit I attended in Las Vegas. I sponsored someone during the Unity Walk as well. I sent a donation to Wikipedia because I use it for info often. I've sent free copies of my Parkinson's Humor book to people who I thought might need a laugh or two. I've given local Parkies rides to the Doctor or to our support group meetings. Ding! Another email. 

Who has helped the Yuma area people with Parkinson's the most this year? Who has helped me the most? Maybe I should use this as a deciding factor. In this case, the answer is easy. It's my Wonderful Husband! I think I will buy him a nice dessert. It won't be tax deductible, but that doesn't matter.