Who we Are... these are the "stories of us"

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Khaw,  K.

I am a Parkie. This is the “fashionable” term proudly used by  PWP – People With Parkinson’s, to describe themselves. PWP  who are active in the many Parkinson’s Disease Support Groups ( (PDSG) are also referred to as PD Warriors because THEY NEVER GIVE UP.  I assume therefore that because I am not giving up, I am entitled to refer to myself as a PD Warrior too! LOL

Diagnosed in June 2008, 3 days before my 54th birthday. I thought my world has ended. It took me 10 years to realize that no, my world has  not ended. In fact, it signaled the beginning of a new chapter in my life. Make no mistake about it.

I spent the first two years in denial; the subsequent three years in bitterness. It was free fall. I now know that  bitter men does not heal well!  I had a few bad falls and was hospitalized a few times. That story will be told at a different place, at a different time. Things got so bad that I decided to take the plunge and went for Deep Brain Stimulation procedures on November 21, 2017 and it was a success. I have a new lease of life and I will not squander it away by continuing to be bitter. I have a very stimulated brain - I am CYBORG!

Over the course of the past two-odd years, I have been active with many PDSGs. That was the best thing that ever happened. I suddenly became alive. I was among my peers – PWP, Parkies, whatever we want to call ourselves. I don’t have to hide, I can compare, brag, even boast and vent about my condition. I can be myself. It was the best decision and best use of my time ever.

I made friends and built bonds; I thrived and I blossomed as a Parkie. Some of the fellow PD Warriors became very close friends - we confided our fears and our dreams in each other. We encouraged each other. We shared our good days and bad days. I became interested in their lives, how they fared, how they coped, how many kids do they have, did they tell their kids about their conditions and I felt drawn into their lives. The good days inspired me and turned my my bad days around. I mourned with them when they lose a loved one, I celebrated when they have happy occasions! I have never been so involved with people I have never met before. I received beautiful music from a fantastic Parkie in Brazil -  very unobtrusively, with a tinge of sadness and shyness because she was not very conversant in English! 

And  a bonus! I found an audience for my corny jokes! My stories about my MIL became a hit! I was hit left right and centre by Millie herself! But it was worth it!

Therefore I am very thankful to have arrived as a Parkie without fear, and to be a PD Warrior. I have blossomed.  I am a blooming Parkie! LOL!

And so I started writing my Musings In Rhythm. Why don’t I call them poetry? I am not so sure if they qualify as poetry although many folks have told me I  write “beautiful poetry”, that  what I have written were so “true, so honest” and that it were the words  that tell their story. I don’t know about that but I do know that the  words describe the various emotions I have personally experienced and that they  came from my heart. And I have learnt that words that come from the heart go easy on the ears.

I decided to publish  this collection after suggestions by a few fellow Parkies  that I do so. And this was given a boost when another fellow Parkie, Ian Scarret, a DJ from Radio Parky Station in UK, approached me to recite one of the pieces I had posted on FB entitled “WHEN SLEEP WON’T COME” which addressed issues relating to insomnia in general, not just sleep issues relating to PD. I eventually recited two pieces of my work and I felt very encouraged that maybe  publishing a collection is a good idea! Maybe, just maybe, it is a new calling in my life! LOL.

You be the judge of that – whether these pieces came from my heart and whether they go easy on your ears! But one thing is for sure -  I find these pieces therapeutic to write and I use them to respond to certain of my fellow Parkies when they are in pain, and in need of comfort.

 

Vera D

It was early 2000 when I noticed a slight twitch in my left calf. Over the next two years it got worse and I developed a tremor in my left hand. I figured my body was reacting to the stress it was under. I was not prepared when after a 45-minute exam the neurologist said, “You have early onset Parkinson’s disease (PD). Go home and be happy.” How dare he give me such a diagnosis based on that exam? I sought a second opinion, knowing the result would be the same. PD was confirmed, again. 

How could I go on, how could I face the future? Denial is great until you are forced to face the truth. For the next few years I hid my disease from most people. Eventually, I told some colleagues, my husband’s family and my two sisters. I did not tell my mother because she was battling PD herself. It took me a long time to accept that I had a progressive, debilitating disease.

In 2005 when we moved to Boise, Idaho, from California I started taking meds for the PD and I did very well. When I looked for a job, I’d keep my trembling hand out of sight during interviews, but stress made the symptoms worse. I held two jobs over the next three and a half years. A friend suggested I apply for Social Security Disability and I qualified. Once I stopped working, I saw the toll stress took on my symptoms. 

Over the next several years I was active in my church and I worked out regularly. I attended my first PD support group where I was overwhelmed by the number of people in the room and their conditions. It was scary to see my future. The guest speaker was Rae Ann Norell who spoke on living well with PD. She said she was looking for a woman about her age to share experiences with. I was that woman! We are now good friends. Before PD, I was shy and did not enjoy speaking in public, but that changed. I started co-leading a PD support group.

In 2013 I wrote my mother’s story for her grandchildren and future descendants. The book was published and since then I have written, edited and published nine books. I helped my 85-year-old friend write her memoirs for her family. I reinvented myself through writing.

I started seeing a new neurologist, who firmly believed in exercise for her PD patients. I was one of the first to sign up for the YMCA’s Delay the Disease exercise program for people with PD. It was inspiring to see how every person in the class improved. The Y also had an Artist in Residence and offered our group an acrylic painting class. My skill never exceeded the paint by numbers I did as a child. I had never been artistic, but I wanted to try something new. We were supposed to paint two hills, a tree and the moon. I found myself painting over everything. The brush had a mind of its own. In the end I came up with Moonlight Over the Sea. This was the first day of my life as an artist and I was hooked. 

I’ve been painting ever since. Sometimes I just pick a color and see where the brush takes me! At a particular low point last summer, I painted Calm through the Storm. A few weeks ago I was contacted by an educational company. They wanted to use one of my paintings on their program brochure for their upcoming symposium on Parkinson’s and Psychoses. And they paid me! They chose Moonlight on the Sea, my first painting.

I never knew I had this in me. Research shows that many people with PD have an explosion of creativity, and it turned out to be true for me. Seeing a canvas come to life is exhilarating. I feel accomplished. When other people like my painting, it’s a bonus. My life has been enhanced by my PD and I am eager to share my story with others. 

Life isn’t over with a PD diagnosis. It can be very rich and rewarding. I will not take this disease laying down. I have too much living to do!

Sue D

I was diagnosed with Parkinson's in Nov 2017. I didn't know anything about Parkinson's. Since then I have been researching as much information as I can. I am 65 and just retired. I keep very busy. My husband and I have 4 children, 5 grandchildren and 2 great grandchildren. We live in valley center, California which is southern CA. We are also care givers for our 37 year old daughter who has Down Syndrome. I enjoy reading and gathering as much Information on Parkinson's as I can. Some of my passions are gardening, herbs, and being active which lately can be challenging. I love creating and having projects to do.

Joe S

I was diagnosed with PD 7 years ago. I started having symptoms approximately 5 years prior. I’m now 60 years old and finally starting to be at peace with having this disease. I accept the fact I have it and I’m committed to delaying it’s progression as much as I can. When I finally decided to view PD as my life’s biggest challenge, I began to feel empowered. Don’t misunderstand, I still have dark moments. However, I can now regroup more easily, knowing that I can fight back to some degree. The will to survive is a great motivator for me.

Julie L

       I was diagnosed with Parkinson’s disease 11 years ago at 45 years old. This was around a month after I left my 25 year marriage and expat life in Asia. My kids, 18, 16 and 10 and I, returned to Australia, at the end of June. I was determined to relaunch my life and my career. On 8 th August, I had discovered I had PD.
       I had dismissed the tremor in my left hand as stress related until my GP wrote a referral to see a neurologist. Within 15 minutes of meeting the specialist, he had uttered the words one never forget s...” I believe you have Parkinson’s disease.” 
In another 5 , he had me out of his office, paying his bill and scheduling a follow up appointment. 
       For the first 6 years post diagnosis I worked as a teacher, then, retrained allowing me to tutor students with Dyslexia. In hindsight the side effects of Pd meds created more problems than PD and I had Deep Brain Stimulation in August 2013 . I experienced migraines and eye problems which I had never had pre DBS so had a total ALL HARDWARE OUT ,and redo the following March. 
       Immediately post DBS , I suffered Personality disorder and attempted suicide twice . I then found a Neurologist who listened, made adjustments and I got on with living.
Through out my life, I have taken responsibility for myself... I claimed blame for my weirdness and decided it would be best if I estranged myself from my previous life, family and friends. 
       I am now living 3000 kms away, working as a deck hand on a 22 foot commercial , longline ,fishing boat . We catch shark and snapper 50 km offshore. I love the wild, remoteness. 
       Right now it is 4am . I am in the small Island hospital. I need to decide what to do about the DBS... should it go or stay?
The battery needs replacement. I will need to travel 6 hours to Adelaide...Perhaps... 
Perhaps not

Marty A

My journey with PD began on March 3, 2002, the day my father passed away. I noticed a new tremor in my left hand. Two years later, after hip replacement surgery, my PT noted prolonged tremor after therapy, along with no arm swing and balance issues. Needless to say, my gait was altered. Two neurologists, one a movement disorder specialist, decided I had essential tremor. Breast cancer intervened and pushed my movement issues to the back of my mind. Any movement symptoms had to be related to the effects of treatment for my cancer. Right?

I was diagnosed with PD in 2010 - by the MDS i had seen previously. She offered little infotmstion, gave me prescriptions for Sinemet and Comtan, ordered an MRI and asked that I follow up with her in a month. As she exited the exam room, she said, "your husband better keep his job because you're going to need the insurance" and "you'll be bedridden in 10 years". 

I spent the next 18 months going through the stages of grieving. Denial - she was wrong before; she didn't listen to me, etc. Bargaining with I'll show her, I will improve my exercise regimen and prove that she's wrong. Anger, just who is this chick who doesn't know me? How could she be so cruel? Depression quickly moved to acceptance. I buried myself in research and learned everything I could about PD as compared to ET

I sought a 2nd and 3rd opinion and my PD diagnosis was confirmed in 2013. My new MDS agreed that I also had essential tremor and dystonia. I was prescribed carbidipa-levodopa, Selegiline, Mirapex only after a lengthy discussion and a joint decision. He provided many resources and a great deal of information

My career as a registered dietitian/nutritionist was quite successful and I enjoyed my work as a director of six departments and 180 employees, along with the work I most enjoyed - working as part of the team providing care to our sickest patients in the ICU. The pressures of my job continued to increase (it's health care these days) and I found myself working 10-12 hour days consistently. Exhausted from the demands of my work as well as trying to be ON all day, I would end the day with a dog walk, a bit of conversation with my husband, dinner and in bed by 930. Sleep was inconsistent with vivid dreams, followed by hours of self talk and worry

I left work on medical disability in May, 2015. My symptoms immediately improved as the load on my shoulders lifted and stress disappeared. My 'theme song' became Pharell Williams' song, "Happy". Goals were immediately set: Reconnect with my family; travel; participate in PD research; exercise; and give back to our PD community. Fortunately, I've been able to achieve each goal my husband and I will soon embark on yet another cross country trip. I'm involved in multiple clinical studies i participate in yoga classes, PD dance, PD group exercise, force pace cycling, etc through a Parkinsons specific exercise program that I helped to develop. Along with others from our Parkinson s Association of San Diego board, I share my experiences and knowledge in presentations for those who are newly diagnosed. Giving back and helping others with PD has been more fulfilling for me than for those i aid. Humor and hope are constancies in my life. 

My Neuro told me in late 2015 that he had done all that he could for me from a medical perspective. I was highly sensitive to Sinemet and was experiencing dyskinesia - but only on my left side. Evaluation for deep brain stimulation was recommended. I had DBS surgery on 1/7/2016 and my life immediately changed for the better. 

Everyone has something they deal with. I'm not special because I have PD. I do my best to stay positive, help myself and others, and live my best life. I've been given the talent and ability to share my best life with others so they can find positivity and hope in their days. Better management of our disease is just around the corner - maybe, just maybe, a cure will come as well.