In the fall of 2009 while in my doctor's office for my annual physical, I mention that I was having a slight tremor in my left arm. She examined it and told me to keep my eye on it but said not to be concerned about it. "As people age," she said, "some develop a resting tremor but it is not a serious condition." In the next couple of months however, the tremor grew worse and I was referred to a neurologist at the Mankato Mayo Specialty Clinic.

To look at me, I was a bubbly, healthy, middle-aged woman that needed to lose weight otherwise, ordinary. The day of my appointment, the neurologist had me walk for him, quickly raise and stomp my feet, one foot at a time, asked me to watch as his finger went from the left to right eye and back again, and various other simple tasks. When he was through, he told me I did indeed have Parkinson's disease and asked if I had any questions? I did not respond only stared strait ahead. I heard him ask me which pharmacy I used, then said he would prescribe a little blue pill (Ropinirole generic for Requip) to be taken three times per day and the tremors in my left hand would disappear.

That was January, 2010. After being diagnosed with the disease called Parkinson's, life, as I knew it would never be the same, for that matter, neither would I.

The prescribed medicine has side affects including nausea, gambling, and increased sexual libido, one my husband may have thought wonderful. As if those were not enough to deal with, addition side effects may include hallucinations, dry mouth and constipation.

To this day I thank God I have only had to deal with the nausea, dry mouth and constipation. I have yet to become a lady of the night or a nymphomaniac, I avoid spending time in a casino so our retirement funds are still in tact, and luckily shopping was never a huge draw for me. I hate hoarding anything. To date, there have not been any space ships with glowing or flashing lights. Nor have little green men been leaving grass circles in our back yard when trimming the hedges! As time passes, I have noticed this old woman's face looking back at me in the mirror. I don't recognize her and I don't want to!

A few months later, a rather compelling instance convinced me that I should give up my medications and just drink 'Bailey's Irish Cream'. It happened the evening of my husband's retirement party. I drink on occasion, and that evening, I ordered a Bailey's on the rocks, and then another, timing was everything. You see, it was close to the time I would be taking a dose of my evening medication "meal". Yet after sipping the Bailey's, the tremors in my left hand diminished. So, I ordered one more, for good measure. Next I stuck my left hand and arm out in front of four individuals, who confirmed my findings...it was steady as a rock! I felt warm and fuzzy from my head to my toes and the flavor was delightful without the feeling of nausea!
It doesn't take a rocket scientist to know the dollar cost of this medication. Bailey's liquor was cheaper, even though the pharmacy drug was covered by insurance, and I didn't need a prescription from my neurologist to purchase it.

The following week I had an appointment with my neurologist. His nurse came in to do all the preliminaries. I shared my story with her while she worked. We started laughing and she suggested I repeat my story to the doctor, especially if I could keep a straight face. I winked and asked if she could and the game was on.

When the doctor came in and started his question and answer drill, I began to tell him about my desire to give up the little blue pill for a much better tasting solution.

(My doctor is from a different country and although he has an excellent grasp of the English-language, his accent makes it difficult to understand him at times.)

We played our parts well. Calmly, he kindly pointed out the error of my ways. I finally gave in, much to his relief and smiled and winked at the nurse, blurting out "Got you! We all laughed.

(Please indulge this attempt at humor. But sometimes one has to wonder if the side affects caused by the medications would be worse than the symptoms of the disease.)

For the next three years the Ropinarole medicine seemed to put the disease on hold. The only time visible shaking took place was when I was faced with stressful situations. At this juncture, most people would not guess Parkinson's had invaded my body.

Parkinson's disease (PD) is a chronic and progressive movement disorder, meaning that symptoms continue and worsen over time. Parkinson's involves the malfunction and death of vital nerve cells in the brain, called neurons. Parkinson's primarily affects neurons in an area of the brain called the substantia nigra. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination

At this juncture, my gait was being affected but I really did not feel much different. A new meditation was added called carbidope/levodopa a generic of the brand name-Seminet. I was reluctant to take additional medication, but the Doctor kept talking to me about the quality of life. I didn't want to accept this diagnosis and what was to come, if I did indeed have Parkinson's disease. (I began to question why had I not insisted on a second opinion.)

My neurologist referred me to urology because this disease can affect the bladder, and the exam would establish a baseline for it. After the exam, you guessed it, another prescription for a pill called Tolterodine. Another medication that contributes to dry mouth and eyes but helps to prevent leakage. I could not help but think, "Great, but for how long I wondered?" Little did I know, soon I would experience "off times" in the night, which means the medicine would not get me from 10:00 PM to 6:00 AM, but maybe to 5:00 AM instead.

Although, I was taking Ropinarole and carbadopa/ levedopa I wondered if I truly had Parkinson's or was it a Parkinsonism. I was not displaying typical signs of Parkinson's symptoms. No rigidity, no blank facial features, and more times than not, missing my dosage at the scheduled time, seemed to not matter. Maybe I should have been more diligent but once taken, the symptoms stopped within 15 to 30 minutes. I began to want another opinion. After all how could one person, a doctor, a neurologist, mind you, really say with 100 percent accuracy you have papParkinson's disease. After all, I didn't have any lab tests to confirm this diagnosis, only a visual exam. Maybe he made a mistake, maybe another opinion was warranted.

I expressed my concerns to a few individuals, one of them, my instructor of my Tia Chi class at the YMCA. Laurie's son was a doctor at Mayo in Rochester and she asked him to refer me to a neurologist at Mayo Clinic Rochester, specializing in movement disorders, which he did. A special "Thank you Mrs. Drake." After examining me and administering the typical Parkinson's examination, many of the typical symptoms were inconclusive. Dr. Matsamoto thought I should get a test that would prove one way or the other if I truly had Parkinson's disease, so he ordered a DaTScan . (DaTscan, an imaging agent can detect the presence of dopamine transporters (DaT) in the brain which allows physicians to diagnose and begin the correct course much earlier in the disease process.) In the summer of 2015, the DaTScan confirmed I did indeed have Parkinson's disease.

In the fall of 2015 the prescribed medicine I had been taking was beginning to not be as effective as in the previous years. I began experiencing many more "off" times. I put off taking time to find out what services my community had to offer, if any, to help me? Have you asked yourself; is there a support group? Are others going through the same thing that I am and how do I find them?
Parkinson's disease affects many, some have similar symptoms and others have different ones, but all of us learn from one another and we realize we are not alone. Maybe your home needs updates to make it safer for you. In order for you to do everyday tasks. It may be beneficial to install ramps for easier access to enter or leave your home. Don't do as I did and procrastinate, rather be proactive to make it easier on you and your caregiver when the time comes.

The distance from my bedroom to the bathroom is about 36 feet. As my medication became less effective, other symptoms brought additional changes to my life. For an independent individual, making the decision to stop driving a vehicle because one was afraid of falling asleep behind the wheel was a difficult but I knew necessary. It isn't the only adjustment I would have to endure.

lpThe day came when I had to buy my first bag of Depends. They were next to the feminine hygiene products. What size, what kind, what color? There are so many choices. My eyes searched and when I spied the ones I thought would do the best job for me, I reached for them, turned to place them in the cart, when I saw a couple I had not seen in a long time. They were smiling at me and started to come in my direction. I was like a teenage girl buying her first box of tampons. I quickly threw the purchase in my cart, turned and said...."You guys know I have Parkinson's right?" Carol smiled and said, "Yes, then asked how I was doing?" My mind however was on the 'you know what's. I was absolutely certain everyone would soon know about my incontinence issue. (About three weeks later, Carol attended a poetry reading I did at Curiosity-Tea House, in Mankato, Minnesota. As we were drinking tea, I told her how embarrassed I was in the store because of the Depends. She said they hadn't even noticed what I had picked up. (I was relieved but realized how very immature and silly of me.)

However, there is more to the Depends story. Later, the evening of my purchase, I wanted to try on a pair of these stretchy soft gray adult aids. First, I wrestled with the bag for about ten minutes to free three from it's tight grip. I began to shake. The tremors make it difficult to hold the Depend, much less place each foot in the proper leg opening. Being an independent and stubborn person, I was determined to do this task alone. Thirty minutes later, sweaty and hot, the task completed, I stood in front of a mirror and knew in the back of my mind, it had to be an idiot who said how comfortable these items were. These were the most uncomfortable pair of cotton and plastic underwear I had ever had on..well, until now, the only pair I had ever had on. THEN, it dawned on me; I must have them on backwards! So I pulled and tugged, shaking the whole time, but taking another thirty minutes before I managed to pulled them up and----- NOPE, still uncomfortable! I would endure, until on the third evening of this wonderful buy, as I was reaching into the bag, I looked down and read 'men's' and started to laugh. My husband asked what was going on, and through the chuckles, I told him. Guys are much smaller through the hip areas. Duh! I hoped this was the only reason for the ill fit. Once I bought the correct gender and size, I must admit, they are much more comfortable, and yes, 'DEPENDABLE!'
One more thing I have learned from this experience, ask for help when needed.

Warning guys, you will find the 'Depends' in the isle with the other feminine hygiene products. An aisle, I'm sure, males relish being found in. Good luck!

It is very frightening the first time you can't move your foot forward without great effort or you can't rise from a chair without help from a person or an object. The first time one's body feels as though you are trapped in it and can't roll over or get into a comfortable position in order to sleep. Upon waking, the need to go to the bathroom and you realize you must have total assistance to pull your pants up or down, and clean yourself. You even wonder if you will be able to make it to the toilet to relieve yourself or will you use the Depend? I face this on occasions, not each and every time, but it is no less disheartening.

I was raised to be kind and compassionate to all, yet until one is impacted by a disability, it is or was for me, an abstract concept. Until you live it, you cannot know what it means to 'walk in their shoes'. Yes, I was kind and compassionate but today, the word 'respectful' is at the top of my list.

My decision to speak with my Neurologist about a medical procedure called Deep Brain Stimulation for Parkinson's disease was very personal. I must make clear to the reading public this is not a cure for the disease, but a way to make the quality of my life better on a day to day basis.

A person travels many miles in a lifetime. Usually the roads are well travelled. It isn't until one ventures off the road and questions like, where and how could this have happened, come to the surface.

In 2010, I was diagnosed with Parkinson's disease. Why me? How will it affect me? What will my future look like? It is a movement disorder. I questioned if I would be able to dance, run, or even walk. Each person has his or her own journey with this disease. Similarities? Yes, one may have tremors, some not. Some have facial masking or the progression is slow or some hallucinate, and for others, it is also painful.

Choosing to learn as much as possible about this illness, I will caution, must be an individual choice. For many, too much information can lead a person to manifest symptoms. Each one of us has a set of values and beliefs and our minds possess the ability to take what we read and make it our reality. So please choose wisely.

I explored alternative options because my medications were becoming less effective and I began experiencing 'off' times. (Either it takes longer for medications to kick in, or they did not last from one dosage to the next, or both.) My disease seemed to be spinning out of control and I was determined not to let it define me!

There were two methods that peaked my interest for treatment of Parkinson's disease. The first was stem cell research, but the trial was being held in Sweden and they were not taking anyone outside their country at this time. My second option was Deep Brain Stimulation or DBS. Since this was being offered in Rochester MN, a city I was familiar with because I had lived there. (My mother taught in the school district and I attended and graduated from the junior college.) I chose to be part of the one held in this city.

On Saturday, October 30, 2016, I was officially approved for deep brain stimulation from Mayo Clinic in Rochester, Minnesota for the treatment of my Parkinson's disease, approximately 3 months after my initial referral from my neurologist in Mankato.

There were many appointments and tests done before the Mayo Clinic DBS committee would recommend denial or approval of my application for DBS. The process consists of consultations with 1) a neurologist who specializes in movement disorder, 2) the neurosurgeon, 3) a psychiatrist, and 4) the pre and post surgical nursing specialists, and 5) a voice specialist. In addition, various tests are ordered and administered.

In the first appointment an MRI was taken of my brain, (making sure I had one...NOT) looking for signs of lewd bodies that cause dementia. That same day, I saw a movement specialist, a Dr. Klaussen. He did a reassessment of the disease, involving observations of gait, reflexes, and balance etc.

The second appointment, a month later, consisted of a mental health screening and various tests recommended by the psychiatrist, after the morning interview. The afternoon consisted of a battery of various 'brain game' tests that begin and continue for four hours or so...very exhausting.

The final round of appointments, took two days to complete. The first day, the neurosurgeon consults with the candidate, going over the procedure, emphasizing risks and the rewards of this specialized operation. Next, there was a vocal test to observe loudness, vocal inflections, facial expressions, etc., one is asked to read materials out loud and repeat verbal sentences. The vocalist listens to and notes any issues. During the final appoint of this day, I met with the team's nursing staff member. She went through the pre and post surgical procedure and pre and post care for the patient, in this case myself.

NOTE: The next day, the first and last appointment, consisted of two video tapings, first off medications, then once again, having taken the medications and waiting until they take effect, repeating identical tasks. (In my case, medications may take in fifteen minutes or sometimes it might be an hour or more.) After all the information was gathered and compiled, the neurological team, within a week or two of the last appointment, reviews and makes the decision to approve or deny my request for DBS.

During this timeframe, my symptoms worsened. I worried this would result in retaking all the tests, and or in changing the team's decision. So fearful, I kept my changes a secret, a decision I would come to regret, but fear of the unknown was for me, a hard taskmaster.

Officially, I was notified of acceptance for DBS in October of 2016. The first surgical opening was January 11, 2017. For the next few months while waiting for this miraculous surgery, my symptoms increased in severity.

DBS is a two-operation procedure at Rochester. In the first surgery the doctors would implant the electrodes on each side, deep within of my brain. The second procedure is the implant of the battery/generator on either side of the chest below the collarbone, (I am right handed and therefore chose the left side), the sensors leads are also connected to the generator, and this surgery is considered same day surgery.

One week later, my teams' nurse set the first parameters of the programing of the neurostimulator, concurring with Dr. Klassen, my neurologist at Mayo.

As my luck would have it, on January 10th, a major snowstorm was predicted, bringing up to ten inches of snow. My husband and I were bound and determined to stay ahead of the storm. We left Mankato at approximately at 3:00PM and the closer we got to our destination, roadways became more impacted with snow. We arrived at our hotel safely, but asked our children to cancel their plans to join my husband in waiting for my surgical procedure the following day. They finally agreed and I was thankful I did not have to worry about them.

The morning of January 11, 2017, I arrived at Saint Mary's Hospital at 5:45 AM and went directly to registration. Once all my insurance cards were checked against approval information, various other questions answered, I was escorted to a holding area until my surgical team was ready for me.

I was taken down to the surgical area to meet my anesthetist, who reminded me that only local anesthetics would be used so I would be awake and able to answer questions directed from DBS team. I asked if they were planning on inserting a catheter for my spastic bladder condition. She indicated no, which I thought a mistake.

Next I would be fitted for my head frame, taken for another MRI mapping my brain to help guide my neurosurgeon's skills to ensure the best possible placement of the sensors targeting my affected area. A CT scan is done after the surgeries to ensure electrodes are placed in the targeted area and there are no immediate complications, such as brain bleed, etc.

Surgery started about 8:45AM. The head frame was locked into a larger frame so my head would not move. A sterile covering is draped over my head and the frame. A small amount of hair is shaved where the holes are drilled on each side of skull to insert the electrodes. The sawing of the skull was loud and it vibrates ones head but there isn't any pain during surgery.

At this point there are monitors everywhere and people stationed at each one. I was awake to answer questions as they targeted the treatment area. I may be asked to move my fingers and hands or draw or write on paper or asked if there was any numbness? My answers help the care team identify whether the electrodes are placed in the part of my brain that causes my condition.

A small recording electrode was placed into my brain. It allows the brain signals to be seen and heard on a computer. My neurologist studies the sounds to make sure the correct areas of brain are targeted. Then it is removed and the permanent electrode is put into the same position. Stimulation is passed through electrode to see how well it works in that position. They watch to see if my responses are better and test for any side affects, such as tingling, pulling of face, speech difficulty, or double vision. Mild affects are normal, but if to big, the surgeon moves electrodes to a better position.

The first side was completed and Dr. Lee, my neurosurgeon, poked his head under the sterile covering and gave me thumbs up and a big smile.

It was about 10:00 AM and the need to go to the bathroom was intense. I said something about it when they decided to put, what felt like a square metal container, the size of a sardine can, under me, and said ok, go ahead. (ARE THEY KIDDING??!! First off, we potty train our children; it takes months if not longer. We teach them it is a private matter. There has to be at least 15 pairs of eyes on those monitors!!! Try as I might, they may have gotten a thimble full but no more. I said to take it away.)

They began on the other side and this surgery came to a close about 11:30AM. I was to be taken to get a CT scan making sure everything was placed correctly and there was not bleeding etc., I would be in my room by noon.
Just then, there was an alert, and I would need to wait until four people had CT scans. ( There had been a major car accident and these people became a priority.)

There were only three nurses in the room now. I knew I could not wait another hour for the bathroom and said as much. They said I had a Depend on and should not worry about it. I now know what Noah felt like, a flood was coming and the only place safe was the ark. My Depend was like a rowboat in the great flood. The rain came in sheets and there was no dry land in sight. Once the flood waters had receded, I was cleaned, dry and VERY HAPPY! At 2 PM I was taken back to my room, and the first request I made---a bathroom break.

Two weeks later, I came back for the second surgical procedure where they placed the battery/generator in my chest. As stated previously, this was considered same day surgery, however snowstorm number two hit Minnesota, especially South Eastern Minnesota so we stayed an additional night in Rochester, leaving later in the day to avoid as much MinDot clean up as possible. We were back home by 2:30 PM. I was to rest, not lift anything weighing more than ten pounds. Then four days later we traveled back to Rochester and met with another team member, who did the actual programing of my device, a two-hour process, reviewed with Dr. Klassen.

I was then given my device, which allowed me to fine tune those setting, however, not more than .6 increase in the voltage but not more than .1 per day, and only one side at a time. If there were negative side affects, I was instructed to lower the increased side to a previous setting where the symptoms did not show up.

In my mind I would be kicking my walker down the street. However, when feeling I wasn't making any progress, I was told "it's called BABY steps, Kathy." "Oh," was my reply, "But I have big feet. " It takes more individual programming sessions with 'my team', and anywhere from six months to a year. The hope is to be able lower my medications to a level that will allow me to drive a car again. It will be a long time before we see my optimal outcome.

The second programming session is scheduled for April 18, 2017. Although I felt there wasn't much change, my earth angels and rays of sunshine at the YMCA of Mankato tell me they have noted improvements. Everyone has continued their prayers for me and I am so blest to have them in my life. God walks beside me and on those difficult days, carries me in His arms.