The Fifteen Year Anniversary of My Parkinson's Diagnosis

The 15th anniversary of me finally being diagnosed with Parkinson's disease (August 2007) came and went without any fanfare. I was too busy to even think about it. I was 2300 miles away from home and my normal daily routine was completely screwed up. In fact, the only thing that kept me sane, was my sense of humor. I laughed a lot during those five hectic weeks.

We had flown into Orlando, Florida very late on August 3rd. My stepdaughter was having major surgery and would need MY help afterwards. Her home isn't large enough for four adults (Her, her son, her dad & me) so we stayed at a nearby Airbnb. We only had a few days before her surgery but we were able to get over to the beach, once.  

First I had to learn the idiosyncrasies of her car. Then I had to get used to the Orlando traffic and be able to get to the hospital and back in the dark while driving in the daily thunderstorms. I hadn't been in Orlando in over a decade and back home in Yuma, it rains so little, I don't even know how to turn my wipers on!   

Most days we left the Airbnb before 8 am and got back after 11 pm. For five weeks, I was her nurse and pharmacist. I helped her get into and out of bed, bathe, braid her hair and get dressed. It wasn't easy but I just did what had to be done. By the way, the surgery was a success and she is doing great.

So, other than that, how am I doing 15-years after diagnosis? Well, according to the experts back in 2007, I should be in a wheelchair or using at least a walker. I should be showing signs of cognitive impairment. I should be taking tons of Parky medications around the clock. 

But I am none of those!

I still walk unaided. I still drive. 

I can still do the daily Wordle in less than 6 tries. 

I take care of all the family finances. I do our income tax returns myself. 

And I haven't taken any Parky medications since shortly after I had my DBS battery replaced in June of 2019. 

I'm not perfect though. 

I drool a lot because my mouth is always open. Wearing a mask in public solves that embarrassing situation. At home, I'm kind of like a slobbering dog. Woof! 

And my speech is getting much worse. I know exactly WHAT I want to say, but it's a struggle to get the words out clearly and in complete sentences. Even Wonderful Husband has difficulty understanding me. The louder I try to speak, the worse both the stuttering and slurring get. The funny thing is, I can whisper into my Google speech keyboard and it will generally type exactly what I say. 

My right foot tends to freeze (feels like it's stuck in glue) especially in areas where the flooring changes or if there's clutter or tight spaces. This was a huge problem in Orlando and almost caused me to fall many times. The Airbnb had 5 different types of flooring and not much room to maneuver. Put me out in the open, and my foot never freezes. 

I have been working with my DBS programmer to try to fix these freezing episodes. I only see him every few months and unfortunately for me, changes don't take effect right away. So he's long gone before I know whether it's an improvement or not. 

All in all, I'm doing pretty darn good. I wonder what to expect in the next 15 years? One thing for sure, I'm going to keep on laughing. You should too!.

DBS Update: Six Years Later

It has now been SIX years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and I bet you are curious as to how am I doing?

There isn't much change from last year. My DBS device settings are exactly the same as they were last year (1.30 left, 1.90 right) and my generator battery level is 2.76V which is lower than I expected, but still a long way from the 2.59V replacement (ERI) warning. 

I have reduced my intake of carbi/levodopa to one half of a 25/100 pill per day. Yes! You read that correctly, I have LOWERED the amount of Parkie meds I take daily. 

My sense of humor is still there and I try to find things to laugh about every day. My slowness of movement and rigidity are well controlled. I have almost no visible tremor, except first thing in the morning. 

Settings: 1.30 left side, 1.90 right side

I am happy that I have had such amazing results from my DBS experience and am thankful to Medtronic for making this therapy a reality. 

If you want more details, read last year's update: DBS Year Five.

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Jury Duty with Parkinson's Disease

The notice arrived in early May. It was a juror questionnaire form, asking me to respond online. I could have asked one of my doctors to write me an excuse but I did not. I think I would like to serve on a jury. I never have. The notice said I may be called any time after July 1st.

On August 11th, I get my Official Summons in the mail. I am to report at 8:15 AM on August 20th. I am a tad bit excited. Maybe it will be a murder trail, or a bank robbery or something else interesting. 

Here comes the Judge...Jury Duty Summons

Soon I realize that I will have to get up early enough to take my thyroid pill on an empty stomach, wait 30 minutes to eat my breakfast, take my Parkinson's disease pill and get dressed in business casual type clothes. My typical hot weather attire of shorts and tank tops are not allowed.  

I also hadn't factored in the thirty minute drive down there or what I was going to do about my second meal of the day. On a normal day, I eat breakfast around 10 AM and then Wonderful Husband cooks us a big meal which we eat about 2 PM and at night we have a salad, or cheese, or snack on some fruit. All of a sudden, Jury Duty was losing its humorous appeal.

The morning comes, I get up when the alarm goes off at 6 AM, get ready, and pack a peanut butter sandwich and fill my Yeti cup with ice and water. Since Wonderful Hubby and I are together 98% of the time, we only have one cell phone, so I leave it at home with him. The other 2% of the time, one of us is using the bathroom (hee-hee.) I park in the courthouse garage, grab my sweater (in case it's cold in court) and walk to the entrance. It's 8 AM and already 90° outside. 

Yuma County Courthouse

I walk through the entrance doors and feel like I'm at the airport screening. People are taking off their belts, watches and emptying their pockets. Bags, briefcases and purses go through the scanner and people walk through the metal detector. I stand to the side and tell them I have a pace-maker type device. It's easier than trying to explain my DBS implant. I get the hand wand treatment instead.

I show my ID and sit down in a large room with about 250 other people. There are TV screens everywhere, all tuned to a channel devoted to houses; remodeling, selling or buying bigger homes. After 10 minutes of that, I am bored, so I people watch instead. There are twice as many men than women and more in their 40's than in their 20's. I see one obviously very pregnant lady with a toddler in tow, two people on crutches and only a few with gray hair. There are quite a few with tattoos, piercings and bright hair colors of blue, green or purple.

A bailiff comes in, asks everyone to stand and introduces the Judge. The Judge has us all raise our right hands and puts us all under oath. He then tells us it will be a medical malpractice civil trial (yuck) and they hand out forms for us to fill out. After we fill them out, we can leave. If we don't hear anything, we are to report on the date listed on the form.

I realize now that I have a problem, my handwriting is so terrible, I can't even read it myself. Most of the pages have yes or no boxes to check, so that's okay. Then there is a page with the trial dates listed; three whole weeks in September and early October. They want to know if I am unavailable on any of those dates and if so, why. I don't have our cell phone with the calendar on it, so I don't have a clue what may be scheduled a month from now. I can't remember what I'm doing tomorrow or next week without checking my calendar! 

I see the first Monday in October is listed and realize that's our Parkinson Support Group meeting day. I manage to scribble why I can't serve on that date. I also scribble that due to Parkinson's, I'm not sure I could be in court every day, from 8 to 5 for three weeks in a row. By the time I finally get the form done, all of the other 250 people are in a line to leave. I am the very last person to hand my form in. I ask the bailiff to make sure he can read my Parkinson's scribble. It's only 10 AM and I'm on my way home and I am completely exhausted. What was I thinking?? I should have asked my doctor for a medical excuse. There's a huge difference between being at home all day and being in court all day. 

Once I get home and check my calendar, I find out  my step-daughter is coming to visit, I have a Doctors appointment and a teleconference all scheduled during those three weeks of trial dates. All I can do is wait and see. If I have to go, I will try to explain to the Judge why I didn't fill out the form when I was there. 

The phone rings a week prior to the trial start date, I don't recognize the number, so when the man at the other end begins to mumble quickly, I just hung up. I did a Google search on the number and realized it was the Court. I called back and was told that I did NOT need to report. Problem solved. Whew!

As much as I want to fulfill my civic duty and serve on a Jury, the reality is I can not do it, either physically or mentally. I would not be able to show up on time, for multiple days in a row and be able to stay alert. I would not be able to take handwritten notes and I'm no longer capable of remembering complex details. When it came to deliberating, I would not be able to express my thoughts clearly and would probably come across as being drunk, stupid or both. 

Looks like the Justice system will have to get along without me and that's okay. A criminal trial might have been interesting. A medical malpractice trial would have been sad and possibly made me angry. Neither would have been funny and if it doesn't involve humor, I'm okay with missing out. 

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Your Local Drug Dealer

If you have Parkinson's disease, you should get to know your friendly drug dealer, also known as your pharmacist. They know more about Parkinson's medications, side effects, as well as food, drug and supplement interactions than even the best Movement Disorder Specialist. Why? Because that's their job.

A local pharmacist named Kirti spoke to our Parkinson's support group. He used words we could all understand and even had a sense of humor. Who knew pharmacists could be funny? They always look so serious behind those partitions. Or maybe they are just working hard. 

Even I learned a few things. (I know you can't believe it. I was surprised too.)

During the question and answer part of his presentation, a lady asked if medications could cause brain fog. He repeated her question so everyone could hear it, using the microphone, but he said brain fart instead. The lady blushed and quickly corrected him. Then he blushed and everyone started giggling like first-graders. (We always try to laugh at our meetings.) 

Another lady asked about calcium supplements for osteoporosis and PD med interactions. He said, do not take more than 600mg of calcium at one time because your body cannot absorb more than that. Also, be sure to spread the doses out during the day. Buying those 1200mg tablets is wasting your money. 

He also stated that many minerals found in supplements (calcium, magnesium, aluminum, iron) can bind to the carbi/levodopa (Sinemet) and may interfere with its absorption. So if that one particular dose of Parkie meds doesn't seem to work as well, did you take it with that multivitamin? It's best to use the two-hour rule: take minerals two-hours before or after taking your Parkie meds. 

Woman's multivitamin

Contains lots of minerals

I guess we better dig out our magnifying glasses and read the fine print on ALL the over-the-counter supplements we take.

A man complained of morning dizziness. He said he takes his Sinemet as soon as he wakes up and then feels lightheaded for an hour or so. The pharmacist explained that our heart rate and blood pressure drop while we sleep and the Sinemet may also cause a blood pressure drop, and that might be the cause of his dizziness. He suggested the man move around some and wait an hour or so before taking the Sinemet. If that doesn't work, tell your Parkie Doctor. 

Another lady complained about the high cost of one of her medicines. She said a one-month supply of rasagiline was over $600. The pharmacist whipped out his smartphone, used his GoodRx.com app, and found her a price of $172 at Walmart. (One of his competitors.) RxOutreach.org has good prices as well. 

He also warned her to avoid foods with tyramine while taking rasagiline or selegiline. Foods like: cured, fermented, air dried meats and fish, aged cheeses, sauerkraut, kimchi, red wine and tap beer. There was an audible groan in the room, right after he said wine and beer. 

Someone else asked if there was a difference between Stalevo versus taking Sinemet and entacapone (Comtan.) He said the only difference is that with Stalevo, it's all in one pill and it costs more. (I'm really starting to like this guy.)

Another person asked about excess saliva and drooling. He said there is a drug that may help dry up the saliva, but that it may also cause constipation, which can already be a problem with Parkinson's. 

Someone asked how to get info if you use a mail-order pharmacy like RxOutreach.org or through the Veterans Administration? He said any pharmacist will gladly answer questions about any medications, including over the counter ones, even if you get them elsewhere. 

Then people began to ask about other non-Parkinson's related medications. Heck, while we had him captive, we might as well get all our questions answered. 

Finally, he was asked if he could recommend a local physician for Parkinson's treatment. His answer was "Just like all Parkinson's medications have side effects, so does living in Yuma. The weather is great, people are friendly, but limited access to specialists is the side effect."

Get to know your local drug dealer, they can answer your questions and who knows, they may even make you laugh.

DBS Update: Five Years Later

Well, it has been FIVE years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and the thing people want to know most is...how am I REALLY doing?

I am still doing fairly well. There isn't much change from last year. My DBS settings are slightly higher; up .1 on my left side and .3 on the right. However, they are still much lower than the average DBS recipient.  

current DBS settings

My battery is reading 2.85V, so I still have a ways to go before it hits 2.59V, and will need to be replaced. 
Dr. Norton, my neurosurgeon, promises not to retire before then. Dr. Norton is 77, still working full time, and one of the best. 

Battery level

I now take one half of a carbi/levodopa pill on odd days and two halves on even days. I tried taking two halves every day, but it was too much.

Daily pills: Allergy, Sinemet, Thyroid 

I'm still a Happy Parkie and I try to find some humor every single day. I feel better when I laugh, so I laugh at cartoons, stories, neighbors telling jokes, funny TV shows, etc. But if you want all the details, please keep reading. 

Tremors: My intention (action) tremor is almost non-existent, except early in the morning before I take my first carbi/levodopa pill or if I am under duress. Resting tremor was never a problem for me. I still get bouts of internal tremor occasionally, but I am so used to them, I don't even notice. 

My rigidity is also well controlled, unless I stay seated too long, then it takes considerable effort to get to a standing position. Getting out of the passenger (right) side of the car is becoming more difficult, but the drivers side presents no problems. I also noticed that I have been hooking my foot off the side of the mattress to help me turn over in the past few months. Straightening up when first getting out of bed takes more effort than it used to, but then again, I'm another year older.     

My gait is becoming more shuffling. I also notice my right foot hits toe-first whereas the left rolls easily heel-toe. I can force the right foot to roll and take bigger steps, but I must concentrate totally just on that. As soon as I'm distracted, the shuffling returns.

If I grab a cart when I am shopping, pushing the cart seems to help with my gait. I don't know if it's the actual pushing, the way I'm holding my arms/hands or a mental thing, but it works. Look closely at my feet in this video.   

Adjustments of DBS settings help somewhat, but then cause other problems that are worse. Adding an extra dose of carbi/levodopa causes my right foot to kick out sideways and more dyskinesia, so I just live with it and am thankful I'm not worse.  

Bradykinesia (slowness of movement) varies during the day, but overall, my right side is considerably slower that my left. This is very noticeable during the finger touches, open/close hands and foot tap tests performed by my Neurologist. Not that I actually use any of those movements in real life! Does anyone?

My Wonderful Husband notices this mostly when I am trying to scratch an itch or use a knife to cut meat. It's as if my right hand refuses to move back and forth quickly. I have never noticed this, but I'm glad he does. 

That takes care of the Motor symptoms designed to be helped by the DBS. The Medtronic DBS is doing its job!

As far as the non-motor symptoms, I see some advancement of my Parkinson's disease:

I drool. It's embarrassing. I try to keep my mouth shut, but it re-opens and combined with a typical Parkinson's head down posture, saliva sneaks out. I tried chewing gum, but I have always swallowed the gum after a few chews, and I still do the same. I suck on mints, regular or sugar-free, and this helps. If possible, I sit with my hand under my chin, to keep my mouth closed. My Neurologist said we could try Botox, but I declined. I'll figure out a non-medical way to deal with it.

YumaBev with hand under chin

Constipation: If I eat my regular diet and drink plenty of water, I have no problems. If not, well, you know.

Speech: My voice is getting softer in volume. I use the speaker option when making phone calls and this helps me with the volume. My upper lip doesn't move correctly, and this causes some words to sound slurred. When I preview voicemail recordings I leave, no matter how hard I try to speak clearly and with inflection, I sound like a monotone drunk.   

I used to be excellent at reading out loud, and I enjoyed it, but now find I stumble on the words. 

When I speak, the words seem to have a difficult time getting from my brain to my mouth, even though they are both in my head. It's as if the words travel all the way down to my big toe first, then some take a detour to my other big toe, and then a few of the words stop and visit my pinkie finger. Well, you get the picture. 

Doing all the speaking at our monthly Parkinson's Support Group meeting, even with a microphone, is exhausting. 

I will be participating in a speech related clinical trial in early 2018, so I hope it helps.

Cognition: I can sit here and easily type out my thoughts. And by easily, I mean, the words flow easy; getting my fingers to type them requires using the backspace and delete keys often. 

If you ask me to subtract 7 from a starting number and continue, I can do it easily. (I wonder how the "new math" students would do with this?) But if you ask me to say as many words that begin with the letter "N" in 30 seconds, I probably won't name as many as I could last year. 

Multi-tasking: I used to be able to do many things at the same time. On a scale of 1 to 10, I was a 16. Now I have trouble answering a question while I am pouring milk on my cereal. It is frustrating. My neurologist dismisses this as age related, but I think it's a Parkie thing. My Wonderful Husband and most of my friends are all 20+ years older and none of them have this problem.

Driving: My built in GPS still works good though, and I am still the primary driver in our house. I know what exit to take, which lane to be in and where to turn when we travel to Tucson to see my Parkinson specialist. It's easier for me to just drive than for me to try to give the directions to my Wonderful Husband, especially with my speech delay. 

Sleep and fatigue: I sleep about 8 hours a night, but still seem to run out of energy every afternoon, so I take a nap. If I skip the nap, I find it difficult to stay awake while watching TV in the evening. 


Miscellaneous: I seem to have a constant stuffy nose and congestion in my throat, and my primary doctor recommended an OTC 24-hour allergy pill, which seems to help. 

The two smaller toes on my right foot randomly decide to curl under. I've tried to see if it's an on/off medication timing thing, but it never happens at the same time of day. It is not too painful, but it has caused the nails on those two toes to become thick and ugly. (This is my excuse for a pedicure!)  

All and all, year number FIVE with DBS has been very good and that keeps me a HAPPY PARKIE indeed!

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Meet Kathryn Bradley MD

For those who follow this blog regularly, you know that a big detour got thrown into my Parkinson's disease road trip when I found out that my Movement Disorder Specialist, Dr. Sherman, was no longer on my insurance companies list of clinicians I could see. I would need to find a new doctor. I was not a Happy Parkie and found no humor in this detour at all.

Luckily, I managed to find a replacement, Dr. Kathryn Bradley, also in Tucson, and in the same medical practice as the neurosurgeon who did my DBS surgery, Dr. Norton. When I called for an appointment, the first "new patient" one they had wasn't until February. I could wait.

I had met Dr. Bradley once, when she came to Yuma with Dr. Norton for a seminar I helped arrange. She had attended the University of Arizona Medical School in Tucson before going on to Vanderbilt in Tennessee for the rest of her training. 

Since I was going to Tucson in November to speak to the medical school students, I decided to write to her and explain my situation. I didn't need any adjustments to my DBS settings or any medication refills, I just needed to get established. Perhaps, they could squeeze me in, on one of two specific days? A few days later, I got a call, and an appointment the same day I would be in Tucson. It pays to take time to write a letter (in fact, that's how I got diagnosed!)

I went to my appointment and to be honest, I didn't expect much. I knew they had squeezed me in, so I expected a quick hello and see me again in six months kind of visit. I was wrong. Dr. Bradley gave me one of the most thorough neurological exams I have ever had. She did the usual open/close hands, thumb/finger touches and watched me walk. She had me follow her finger with my eyes and looked into my eyes with a light. She used the little reflex hammer on my knees, ankles, wrists and elbows. She had me push up/down with my arms, squeeze her hands with mine. She had me take off my shoes and socks and ran the sharp thing along the bottom of my feet. She checked my balance by tugging me from behind. 

She asked me about my other medical history, sleeping, exercise and eating habits. She was surprised I was doing so well with such low voltage settings and the little amount of carbi/levodopa medication I was taking, especially after finding out I have had Parkinson's for 20 years or so. I told her that Dr. Norton had obviously found the right spot. Needless to say, I was very impressed.

YumaBev & Dr, Kathryn Bradley

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Health Insurance Companies...BOO !!

So there I was, cruising along down the Parkinson's Disease Highway in my very own Happy Parkie bus.

The weather was sunny, there wasn't much traffic and the road was well-maintained. I was enjoying the ride as well as the scenery, just relaxing and listening to my humorous song parodies on the radio. 

All of a sudden, up ahead, I saw a huge barricade across the road. "ROAD CLOSED!" the sign said.

Well, not really. It was my computer screen shouting at me. Or was it me shouting at my computer screen? Does it even matter? I was getting upset and everyone knows stress is bad for Parkies. So, WHY was I upset?

I was on my Medicare Advantage Plan website, checking to make sure all of my Doctors were still in-network before calling to make my regular October appointments. Dermatologist, yes. Primary Care Doctor, yes. Gynecologist, yes. Nearby laboratory, yes. All my appointments are made. Smooth roads ahead.

Hmm, while I am on here, I better double check and make sure Dr. Sherman; my Movement Disorder Specialist is on the list. After all, I already have an appointment with him in November, right after I speak to his class of medical school students. 

Warning! Warning! ROAD CLOSED ahead! 

My Happy Parkie bus came to a screeching stop, sliding sideways and kicking up a cloud of dirt. 

Dr. Sherman's name wasn't popping up like the others. I re-entered the Tucson zip code and carefully typed S-h-e-r-m-a-n. Nothing! I tried a different Tucson zip code, still no Sherman. No matter what I tried, Sherman was no longer on my insurance company list of Doctors THEY think I should see.

I don't need this right now. I am leaving tomorrow morning for Portland. I sent Dr. Sherman a quick email, and tried to calm down and finish packing for our trip. As I went to sleep, the words "Continuity of Care" kept bouncing around in my head. I know how important it is to have an established team of health care professionals, especially with a chronic disease like Parkinson's. 

"Continuity of Care is concerned with quality of care over time. It is the process by which the patient and his/her physician-led care team are cooperatively involved in ongoing health care management toward the shared goal of high quality, cost-effective medical care."

My Continuity of Care just evaporated. I will need to find another Movement Disorder Specialist. IF I can find one accepting new patients, it will likely mean a six-month wait for an appointment. This means pages of paperwork for my Wonderful Husband to fill out, again. Plus I will need to educate my new Doctor about me and my DBS settings; what they have tried in the past; what worked and what didn't. In other words, this will be a huge pain in the neck. 

Morning comes and I have decided to deal with it when I get back home from Portland.

I check my email and there is a reply from Dr. Sherman. He knew nothing about the insurance change, and says he will try to work something out for my upcoming visit.

I asked a doctor friend how they decide what insurance they will take and was told they have little choice in the matter. The insurance companies decide how many providers they need in an area, and then they pick the ones they want and sign them up. 

Don't our insurance companies realize how difficult it is to change doctors? Do they even care? It's not like I can just call one and get an appointment for next week.

I don't WANT to find a new Parkinson's specialist. I like the one I have. 
       
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Sad Feet to Happy Feet

My feet had been bothering me for several months. The pain was different than last year. I wasn't sure what was wrong with my feet, but I thought I had better find out. I called to make an appointment with a Podiatrist and hoped I could get in before October. The receptionist asked if I could come in the next day. I said YES. Apparently someone had cancelled right before I called. Lucky me.

I stopped by later that day and picked up the forms so my Wonderful Husband could fill them out for me. The next morning I went in for my appointment. I explained to the Doctor that my feet hurt intermittently; some days were bad, other days I had no pain at all. He asked if they hurt when I first got out of bed (plantar fasciitis) and I said no. He had me walk, stand and manipulated my feet. He said my Achilles tendons were very tight and my one leg was shorter than the other. He grimaced when I told him I had Parkinson's and a DBS neuro-stimulator. He said having Parkinson's complicates things. Duh!

He put a lift in the heel of my one shoe and gave me some stretching exercises to do and said come back to see me in a month if you don't have any improvement. 

I went home and did the stretching exercises. Since this looked like something I would have to figure out on my own, I started paying very close attention to how my feet were affected by my Parkinson's medication cycle and DBS settings.  

I noticed that when my Parkie meds kicked in, two things happened. My feet would stretch and twist themselves awkwardly and I would walk on my tip toes, but only for about 10 minutes. If I was sitting down during these twice daily episodes, my feet were fine. If I was standing or walking when it happened, then my feet would hurt the rest of the day. This explained the intermittent foot pain. 

Since I was only taking half of a carbi/levodopa pill twice a day for my speech issues, cutting back wasn't an option, unless I wanted to be mute. (No snide comments from the boys out there!) 

I lowered my DBS settings a bit, but the stiffness and slowness returned. I tried adding another half a pill with the lower settings and finally found a good combination. I lowered my DBS settings by 2 tenths on each side and increased the carbi/levodopa to four halves a day and actually improved my speech! 

Within a few days of figuring all this out, my feet stopped hurting. I am still doing the stretches the doctor ordered. This Happy Parkie now has Happy Feet. 

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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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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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."