by Arleen McNamara Brahn Walters
I don’t think of all the misery, but of the beauty that still remains. – Anne Frank
Sitting here with pen in hand, able to put words and thoughts on paper, is a miracle all by itself, as Parkinson’s Disease has made me unable to write for three years.
Due to the coronavirus pandemic I haven’t attended church for more than a year. However, I prayed for the whole world to be cleansed of COVID-19 and for lives and livelihoods to be saved. My personal prayer was always the same – “I don’t expect a miracle, Lord, but let me be independent and able to take care of myself.”
My late husband, Lee, had a terrible motor neuron disease that robbed him of joy, as well as his memory and livelihood. I took care of him for 14 years, and would do it again if needed. He died in April 2007 at the age of 68.
I had a yard sale to sell Lee’s tools. The ad in the paper read “Tools – Tools – Tools”. Only men responded, lots of them! Andy Walters came to the sale and we became friends, later dating. Eventually we married on June 4, 2011. Andy enjoys telling everyone that I was the best thing he ever got at a yard sale. Life was so good. We were so happy our motto was “Laugh often, love much.”
My journey with Parkinson’s started one morning in 2013 when I was putting on lipstick. (I never leave home without lipstick!) My jaw began moving back and forth all by itself. When I arrived at my office Mary Lu, my coworker, asked what was wrong with my chin. I replied that my mouth had a mind of its own. Trying to figure out what was happening, we looked up the symptoms on the computer. They pointed to Parkinson’s Disease.
I decided not to go to the doctor, hoping that these symptoms would somehow just go away. Instead, I chewed gum all of the time, hoping no one would notice my moving chin and the tremors and stiffness I was experiencing.
When I was 70 years old my husband Andy hosted a wonderful party for me, attended by 90 guests. When I arrived and entered the party hall everyone was singing “Happy Birthday”. Suddenly I was unable to move. It felt like my feet were glued to the floor. I knew inside that this was not the first time this happened. Finally I was able to move, but during the entire party I was aware of a stiffness that made me unable to dance or smile. I felt very frightened.
During the next few weeks I read everything I could about Parkinson’s. Everything pointed to a progressive, cruel disease for which there is no cure, so I decided to see my primary care physician, Dr. Jing Zhang. She referred me to Dr. Suying Song, a neurologist. At first Dr. Song diagnosed my problem as “essential tremor” and prescribed Primidone. Since each person experiences different symptoms and there is no specific test, Parkinson’s Disease is difficult to diagnose. People have the misconception that PD only causes shaking, although for many like me, the shaking is the least of my difficulties. The tremors are caused by body rigidity which causes many problems.
Parkinson’s Disease may be inherited, but for many people there is no known cause. PD affects all parts of the body, and the range of symptoms is extensive and varied. They include, but are not limited to the following:
• Tremor, especially in the fingers, hand or chin
• Stiffness and muscle rigidity
• Trouble swallowing; choking
• Excessively small, squashed handwriting
• Loss of smell, notably of bananas, licorice and dill pickles
• Trouble sleeping
• Thrashing around while asleep
• “Restless Leg Syndrome”
• Difficulty moving or walking, with limited arm swing
• Feet “sticking to the floor”
• Stooped posture
• Soft or low voice
• “Masked” face which doesn’t show emotion
• Dizziness or fainting
My initial symptoms were still mild and the progression was slow, however I retired from my job as manager of Fairview Cemetery on Staten Island, a position I held for 21 years. I also stopped driving as my reflexes were becoming too slow. As time passed I began to have more and more weird symptoms. I knew people noticed my sad face, known as a “Parkinson’s Mask”. Strangers would approach me and ask if I needed help or questioned whether or not I was lost. Dr. Song prescribed Carbidopa/Levodopa. I experienced so many strange side effects – sadness, depression, crying and dizziness. To make matters worse, I began to make clucking noises.
Throughout life I have always been a very happy person, but now I was unable to deal with the constant sadness. I discontinued the medicine after 6 weeks, and after a few more weeks I returned to my usual happy self, though I was so disappointed that the medication which helped so many with PD, didn’t help me.
At Dr. Song’s suggestion, I attended Staten Island’s American Parkinson Disease Association. There I learned exercises for all parts of the body that were to help with the symptoms of PD and preserve and improve mobility. I do these exercises daily, without fail. At first I didn’t see any benefit, but now I see they are making a difference.
I was a patient of Dr. Song’s for over 7 years, from 2013 to 2020. During this time she prescribed Ropinerol and Sellegiline, as well as several other drugs. Some helped, for a while. My problems were continuing to get worse. Andy really stepped up to take care of me as I lost the ability to do many everyday things. He cooks, cleans, drives me wherever I have to go, does the shopping and helps me with my personal needs. He even polishes my toenails! Andy has been wonderful, and I don’t know what I would do without him.
In 2020 Dr. Song informed me that she could no longer help me, and recommended that I have a consultation with Dr. Miran Salgado who specialized in movement disorders. I felt heartbroken. I had considered Dr. Song a friend, but realized she was doing the right thing. She was being a friend – and a good doctor – by referring me to someone who might be able to help me.
I made an appointment with Dr. Salgado, but then the coronavirus pandemic hit. I was unable to see him until August 2020, despite the fact that my Parkinson’s got much worse during that time. The volume of my voice decreased and was so low, although I thought I was speaking normally. There were a few people who thought it was kind of sexy though. Many would speak over me as if I wasn’t talking at all. I attended a play, “Little Women”, and tried to clap at the end of the performance. It was then I realized I could no longer clap. The most demoralizing problem was needing help pulling my pants down to go to the bathroom. Each day became a struggle and my health was really going downhill.
MY MIRACLE WORKER, DR. MIRAN SALGADO
Finally the day of my appointment with Dr. Salgado arrived. He had lived in my community, my town of Travis, for several years and I felt a connection with him immediately. I had been the Chairperson for the Travis Fourth of July Parade for 10 years so many residents knew me.
Dr. Salgado is a very compassionate person. He is easy to talk to and made me feel very relaxed. I told him one of my main problems was constipation, and he recommended his “Secret Recipe to Prevent Constipation”:
“Mix all of the below ingredients and repeat 2 – 3 times/day:
1. 2-4 tablespoons of flaxseed powder
2. 1 cup of probiotic yogurt
4. Mixed berries – strawberries, blueberries, raspberries, blackberries”
This “recipe” has helped me, as well as several of my friends and family members.
That first visit with Dr. Salgado, as well as those that were followed, was so thorough that it was exhausting. He even checked my feet! As he asked questions about one thing, he’d continually check other parts of my body at the same time.
I told Dr. Salgado that eating is also a major problem because of drooling. When I open my mouth, saliva pours out. It is disgusting. Dr. Salgado recommended Botox injections into my salivary glands. I left his office feeling very hopeful.
I had the Botox injections and they were somewhat helpful. The drooling is still a problem though.
Dr. Salgado also prescribed Rytary (Carbidopa/Levodopa in an extended-release capsule), Selegiline and a Neupro Patch. I was hesitant to try the Rytary having had a bad experience with the Cabidopa/Levodopa before. He encouraged me to try it again as a number of years had passed, and he felt I might respond well this time. With each day I began to feel better and better.
On December 16th I woke up needing to use the bathroom. I was able to simply swing my legs over the side of the bed and stand up without any struggle. Right away this was something different. I went into the bathroom and had no problem with my clothes. It didn’t seem real. I went into the living room and sat in my chair, watching the snow falling outside and feeling completely at peace. After a little while I decided to try to write something. To my amazement I was able to write not only legibly, but in a normal size, as compared to the extremely tiny writing that I had been capable of. There had been many prior days in which I was unable to write at all. I was so excited!
I didn’t want to go back to sleep, fearful that when I woke up again, things would be as they were before. I can’t explain the feeling of calmness that came over me. I went back to bed after 3 ½ hours, and when I awoke Andy was having his morning coffee. I went into the kitchen, just stood there and said, “Andy, you won’t believe what just happened to me.” And then I said something ridiculous, “I don’t think I have Parkinson’s anymore.” I told him about the events overnight and how great I felt. He looked incredulous, but as the day went on he realized there had definitely been a significant change.
Although I still experience tremors, here is a list of some things I am able to do now, by myself, that I was unable to do for a long time. These are things most people take for granted:
• Dress myself
• Speak louder
• Walk faster
• Tie shoelaces
• Clap hands
• Brush teeth
• Pay bills
• Get in and out of the car
• Put on boots and sneakers
• Fold clothes
• Open and close an umbrella
• Sleep, thanks to melatonin
• Have regular bowel movements
• Cut my food
• Put my coat on and take it off
• Put on earrings
Besides these accomplishments, these are other positive changes:
• “Restless Leg Syndrome” is gone
• Less choking when eating and drinking
• Feet are not “sticking to the floor”
• Less frequent involuntary chin movements
• “Parkinson’s Mask” is gone from my face
• Less slowness
• Less stiffness
• No depression
• Drooling less
Of course I still have Parkinson’s Disease, but with each accomplishment I feel such joy and excitement and cannot wait to share my achievement.
My daughters, Darleen and Tammy, my husband Andy and my other relatives and friends are so surprised at the change in me. I know that Parkinson’s Disease is not curable, but the combination of medicines I am presently taking along with the exercises I do and the “Secret Recipe”, melatonin and Botox injections, my life has been turned around. I am aware that this might be temporary, but I will not give up. I am hopeful and thankful and happy!
Tziporah Kay, Dr. Salgado’s Physician Assistant, is always cheerful and has so many helpful suggestions also. She and Dr. Salgado are my “Miracle Workers”, and I am grateful and appreciative of them. I never thought I would be able to fully enjoy my life again. I thank them from the bottom of my heart for helping to make this “miracle” possible.
No one can predict the future, but with God all things are possible.