Information coming soon!
Dusty was diagnosed with Parkinson’s disease at age 51 in 2009, but like most PD patients he had symptoms for 5-10 years earlier but did not recognize that was what was going on. After two years of trying to adjust the Parkinson’s medications to where they either worked or did not make him sick, Dusty had DBS (Deep Brain Stimulation) surgery in 2011 and has been living tremor free and without any PD medications.
Dusty still works full time and enjoys being to able to complete every day activities. Dusty leads the Dallas YOPD Support Group and is involved with several Parkinson’s organizations including Team Fox and Team Fox North Texas. “Exercise is a critical part of my success of being able to function with PD. It helps my balance, strength, and gait.” says Dusty.
He is involved with Boxing Fitness at Maple Avenue Boxing and Fitness Gym in Dallas Texas. Dusty is also the author of “No Excuses – My Life with Parkinson’s” and his soon to be released book “The Boxer in You”.
I was only twelve years old when I started to feel different... I remember that afternoon seated in my desk trying to do my sixth grade math homework. For the first time I felt helpless, why it was so hard to write a single number?
After a lot of tests, MRI and brain scans, I was diagnosed with Parkinson's. It was very difficult to understand ... why me? I was only a little girl. I was really scared. I thought about my grandfather, he had Parkisnson's Disease too, who spent most of his time in bed, unable to move, talk or eat by himself.... then I understood what Hope means to me.
I lived like a normal girl and did the same things as my friends with the only difference that I needed medication to keep myself "on" and active.
Time passed and with it my Parkinson's was getting worse. Side effects suddenly started to appear. There were days that it was so difficult to control my dyskinesia. People said I was hyper-active because I moved a lot. I didn't let Parkinson's Disease stop me from making my dreams into a reality. I finished high school and moved to England to work for one year as an Spanish Assistant in a boarding school. I saved some money and with it I traveled all around Europe as a backpacker. I also visited Egypt . After that year, I went back to Ecuador to start college and get my Economics degree. I worked as an analyst in the Stock Exchange.
I met the love of my life. We got married and we moved to United States. I left my country, my family, and my job to start my new life next to the person I love. It is difficult to be far away, but it proved to me that despite of my Parkinson's Disease that is progressing and taking part of my body and my mind, I could not do anything I wanted by myself.
I became a full-time wife and later on also a mom. I have two beautiful and healthy sons; One is 5 years old and the youngest is 2. I believe my Parkinson's worsened after my second child was born. It is hard; changing diapers... sometimes it is so frustrating, but love goes beyond the stiffness and I always find a way to do it.
I like to make the most of everyday, because life is too short to sit and wait. It is a story and we are the writers who can make out of it our best seller. I wouldn't change anything about what I have lived. I am blessed in so many ways. I am very controlled with medications, and I have to say I have more good days than bad ones. I believe that everyone should have a good quality of life. That is why we need to keep our Hope growing to allow a Miracle to blossom.
It has been 20 years now, and everyday I wake up wondering how my day is going to be; perhaps I will have off episodes or maybe not. Today is what we have, and we have to make the most of it.
I love my busy life as a wife and a mother. My 3 boys, my husband and sons, are my reason to be brave and optimistic. I will never let my off periods stop my life, I will always fight against them and prove to them that I am strong!!! I will never lose HOPE.
Hope is what keeps me going in life. I always knew that Life does not have to be perfect to be wonderful, so I promised myself never to give up.
"Learn from yesterday, live for today, hope for tomorrow."
Hi, my name is April Culver and I have Parkinson’s Disease. I’m not really sure how long I’ve had it but I was officially diagnosed in October, 2014. The story starts many years earlier when I first noticed tremors in my left arm and hand. Generally late in the evening when I was lying in bed reading my left arm would shake. Probably somewhere around 2007 or 2008. I finally told my GP and he recommended I see a neurologist. The neurologist did a brain MRI and some type of reflex, nerve test (I forgot the name). After ruling out MS, ALS and a brain tumor, he labeled my condition Essential Tremors and told me there was medication to help the tremors but mine weren’t too bad. He said to come back when they got worse. Fast forward to May 2013. I hadn’t been feeling well for a while (like two years) but a lot of things happened in my life, you know just your run-of-the-mill life experiences – divorce, daughter got married, son graduated college, mom got very sick and passed away and 2 uncles also died. Oh, I forgot to mention I lost my job. My doctors thought I was depressed, but I knew I wasn’t. I had a new job that I loved, my kids were awesome and my life was good. After lots of tests showing nothing that would cause fatigue, muscle soreness, anxiety, etc., I woke up one morning with a huge lump in my neck. Hum, now that wasn’t normal. One month later I was diagnosed with stage 4 non-Hodgkin’s lymphoma. The big C word! So, I cried for a day, then put my big girl panties on and slayed that dragon we call cancer. After 8 rounds of chemo, a bald head but no radiation, I was declared cancer free! The chemo caused my tremors to get really bad, my handwriting was horrible and I began to shuffle when I walked. The doctors claimed all possible side-effects from the chemotherapy. My oncologist told me to give it a year and I would feel better. Well, about one-year later and several stumbles, no arm movements, muscle cramps, poor range of motion and incredible fatigue; I decided it was more than just the side-effects of chemo. The final straw was falling out of a bus at a friend’s wedding. Yes, I have Parkinson ’s disease!
I get asked all the time if I’m mad at God for all the challenges tossed my way but I like to quote Robin Roberts, “everybody’s got something”. Life is a blessing and we don’t get to pick the things that happen to us. I have learned to live life to its fullest. I pray a lot, I mean A LOT. I love my job, my kids, my family and my friends. I work hard and I play hard. I enjoy traveling, drinking a fine wine or scotch and good conversations with my friends. My children are my true blessing. They have stood by me through so much the past 5 years and I am so proud to be their mom. And I want to be their mom for a long time, so, we have to find a cure for Parkinson’s disease! I’m thrilled to be a part of YOPD and TFNT and work together with this amazing group of people to raise as much money as we can to find a cure! Together we can make a difference!
On July 11, 2008 at the age of 49 I was diagnosed with Parkinson’s. My father had also been diagnosed with Parkinson's Disease in his early 60’s and being somewhat informed about the symptoms, I had my suspicions before going into the neurologist’s office. But hearing the words Parkinson's Disease was still hard to accept. I was given medication and told to come back in 2 weeks. In denial and not wanting to give in to self pity I returned to work and kept going as if nothing was wrong. Determined that Parkinson’s was not going to control my life and for the first 5 years it behaved.
Funny thing is, I developed an artistic ability that I did not have before Parkinson's Disease. I began making jewelry and started by own small business. There was no end to my creativity and I became obsessed with beading and then wire wrapped jewelry. I became curious if this had anything to do with Parkinson's Disease. So I went to the Michael J Fox web site and sure enough I found that PD is related to creativity in the brain. What a trade off. At least there was something positive to this crazy disease. Making jewelry also became my therapy during the end of a 6 year marriage with a spouse who could not accept my disease. So my journey began with finding out who Pam was and just how strong this person within could be. It has not been an easy journey and for sure I have had many downs times of anger, frustration and depression, but my strong faith in God has gotten me back on my feet. I believed and still do that this disease is not going to stop me from living life to its fullest. I will NEVER give up. I have the greatest support group in my family of 8 siblings, 2 children and 4 grand children. I have found that PD does not control who I am as a person and has made me much stronger and more determined to appreciate the good days and accept the bad ones and to love and laugh with each challenge that falls my way.
I had worked for the Justice of the Peace back home in the Texas Panhandle as a court clerk for 7 years before moving to Fort Worth area in 2001. I have now worked for the Tarrant County Clerk’s office as a Post Judgment Court Clerk for the past 10 years. A friend at work asked me to read an article in the Dallas Star Telegram about a two time world championship boxer, Paulie Ayala, who had opened his heart and gym to train people with Parkinson's Disease. What I found was not only a way of releasing a lot of stress, getting a great workout, but most important a wonderful group of friends who understand me and have been such an encouragement to keep fighting this disease. Through this group I met several people who had undergone DBS surgery and when my neurologist suggested it for me I was determined that no one would be drilling into my head for any reason. HA, after many medication adjustments and having the on and off times that one has with PD, it was becoming more difficult to keep working. So after running out of options, I was willing to give it a try. On December 17, 2014 I had DBS surgery and what an experience it has been. So far I have had positive results and hope to continue in reducing my medications.
Through Punching Out Parkinson’s I met Gary Schmitz. He has become my mentor and friend. He introduced me to the Young Onset Parkinson's Disease group and I am very excited to be a part of this great organization to fight against this disease that will not define who I am but what I am. I am a fighter to the end
Researchers still have not figured out what causes Parkinson’s. Some think it is environmental, like being exposed to certain pesticides and farm chemicals, while others think it may be hereditary. Still others believe it is a combination of events that trigger the dying off of dopamine producing cells in the brain. Dopamine is a chemical that is necessary for the brain to communicate with the rest of the body. By the time a person begins exhibiting symptoms of Parkinson’s, a person may have less than 20 % of his dopamine producing cells remaining. So the disease may start long before the person begins showing symptoms.
After graduating from college, I joined the Navy where I flew as a pilot on active duty for nine years. When I left the Navy, I flew for a major airline for 20 years. I was first diagnosed with Parkinson’s the week before Christmas 2007 at age 47. Looking back now, I realize there were subtle clues along the way. For example, a couple of years prior I began losing my sense of smell, which at the time I just attributed to the aging process. Then there was a time when I was flying an international flight to Europe, and after waking from a crew rest break, a flight attendant telling me, “You know you do everything slow.” At that time I remember thinking to myself, well my body thinks it is 2:30 am and I have just awakened, of course I am going to be slow. Then there was a time I recall on a layover in New York, as I was walking down the street, I ran into an old friend who I hadn’t seen in a few months, and he commented, “Are you having back pain?” I told him no, but I think he was seeing the beginning of rigidity setting in. He said I was walking real stiff like, and rotating my whole body instead of just my head and neck when looking side to side.
All little pieces of a puzzle that one has to put together before realizing something bigger is going on. The final piece came when I was combing my hair one morning and my arms were feeling weak just holding them up. I first went to a chiropractor, thinking I had a pinched nerve somewhere. After a few visits with no signs of improvement, he said he had seen a case like mine once before and it turned out to be Parkinson’s. So, off to see a neurologist who after a brief observation in his office confirmed a diagnosis of Parkinson’s.
My biggest symptom has been slowness of movement. Most people think of Parkinson’s and immediately think of tremors, which I have not developed. You see each case is a little different, and a medication that works for one person, may not work for another. In the eight years since my diagnosis, I have had to increase my dosage of 4 different medications to keep me moving. In June of 2015, I underwent a procedure called Deep Brain Stimulation or DBS, where a device is implanted in the brain much like a pacemaker for the heart, except for the brain. Since then I have been able to reduce the amount of medications taken from 4 to 1 and doing better.
But as of now, there is no cure for Parkinson’s, only medications that treat the symptoms. That is why we ask for your support for organizations like the Michael J. Fox Foundation to help find a cure for Parkinson’s.
My name is Leah. I live in the Dallas, TX area. I was diagnosed with Parkinson’s Disease in August 2011. As those of us with the disease know, the diagnosis process for Young Onset Parkinson's Disease is a bit lengthy. It took 2 years, every neurological test I could imagine, and 3 neurologists. Here is a piece of the long road to the diagnosis.
At the age of 13, I was diagnosed with Epilepsy. So, you could say I’ve been on some form of neurological medications since then. I had quite a few seizures, but they were finally controlled with the proper medication and stopped occurring at the age of 15. Of course being a young teenager, the only thing I was upset about was I had to be “seizure free” for 2 years, which meant I could not get my drivers license until the age of 17. To fast forward, I’m going to spare you the boring details on of my teenage years. Anyways, after high school I went on to live what some may consider an adventurous lifestyle, I made the most of every day. My dopamine levels may have been depleting, but my serotonin was flowing strong enough to keep me blind. Yes, ignorance is ALWAYS bliss.
Unfortunately, the reality check finally hit the bank. Every thing started to change around the age of 21. My so called ” perfect handwriting ” became almost illegible. My classmates and friends would notice my hands shaking here and there, I just thought I was over caffeinated or was in need of food with actual nutrition. I’ve always been a petite female with the appetite of a grown man, but that began to diminish. I LOVED food. Even as a kid I always wanted to open a bakery due to my love for warm sweets. It was as if I woke up one day and wanted to break up with my love for food. My weight began to drop and people started to notice. I knew something was wrong, I wasn’t myself. At the age of 22, my seizures returned and with great vengeance might I add. Therefore, my life took a sharp turn onto a never ending road of neurological exams. Finally, after seeing what seemed like all neurologist in my city, one of them began to notice a slight tremor in my right hand. There was something more going on, more than just the return of one annoying seizure disorder. I started to become easily confused, forgetful, and depressed. I felt decrepit. So after years of testing, my symptoms continued to get worse.
Finally in 2012, I was diagnosed with Parkinson’s Disease by a Movement Disorder Specialist. I didn’t understand. I didn’t take it seriously. Not even my friends and family took it seriously. I was started on the lower end of the medication scale, but am now on the heavy duty stuff due to my symptoms getting worse on a rapid scale. In August of 2011, I only had a tremor in my right hand. But NOW its bilateral, from head to toe at times. I lost my job, I lost my insurance, I’m not allowed to drive, and I am currently fighting for disability. Sometimes I can’t decide if I feel like a child or a senior citizen due to my dependency on others, either way I should qualify for one of the movie ticket discounts. My fancy AM PM pill organizer contains the classic Sinemet, Requip, and Amantadine (and a few other meds I may vent about later). The side effects aren’t the best, but I’ve learned to deal. I will not let Parkinson’s pave my path; it will just have to tag along on the adventure that will continue to be my life.
Information Coming soon
I was initially diagnosed in August 2012 at age 52; an unforgettable appointment, yet I chose to ignore and hide. I did take the prescribed medication thinking I would prove the neurologist wrong.
Despite my own opinion, the disease continued to progress and medication dosage increased. To my personal and family's detriment, I continued to hide and refused to learn more about the disease and all the motor and non motor symptoms that I was experiencing leading to disability.
I finally acknowledged my disease and circumstances and was able to trace initial symptoms back at least six years. The "aha" moments have finally decreased!
And I learned a few things to share with others:
My dad always said take life a day at a time. Now I have finally figured out what that means.
Information coming soon!
It all started with my left hand, an avid knitter for many years, I was having difficulty controlling the yarn in my left hand. I was also a member of the hand-bell choir at church and couldn’t understand why I was having such a hard time ringing the left bell. I mentioned this to my doctor at my yearly physical, almost as an afterthought. Two days later, after an MRI and a visit to the neurologist, I was diagnosed with Young Onset Parkinson's Disease. I was six months shy of my 50th birthday.
One of the hardest things I’ve had to deal with since my diagnosis was feeling alone. On the outside, it looks like I live in a perfect city surrounded by perfect people. It’s hard sometimes to admit that things aren't perfect. But as I have opened up to those around me, I am reminded that everyone faces their own challenges. They may have issues with their kids or spouse or they may have health issues of their own. As one friend put it, “Everyone is walking a mile.” We just don't see that a lot if the time. In my case, I walk a mile with PD every day. But once I started sharing my walk, I haven’t been so alone.
Every day with PD brings new challenges. You just have to adjust. So instead of knitting, I have found that I can make beaded jewelry instead. And I may not feel comfortable taking a Jazzercise class anymore, but I’ve discovered Tai Chi. As the saying goes, each new day is a gift. That’s why they call it the present.
Information coming soon!
My wife Lori has had success with managing her symptoms and perhaps slowing the progression of PD through lifestyle changes and medication, and is always eager to share her story with other Parkinson's patients to encourage them in their struggles with this disease. She was featured in an article in the Sunday Plano Star newspaper.
Lori and I traveled to Tucson as part of Team Parkinson November 22nd, 2008. Lori was featured in a 3.5 minute video shown at a pre-ride banquet preceding El Tour de Tucson where she talks about her victories over Parkinson's and how she is able to better manage her symptoms through diet, exercise and stress management. The day before the ride, Lori and Tom Viviano, executive director for ADPD in Phoenix, held a radio media tour for radio stations around the country to raise awareness about Parkinson's disease to a potential audience of almost 2,000,000 listeners! She is also featured in "Tradewinds", which is a cycling magazine for the Southern Arizona area.
Lori is featured in the book "Helping Hands of Parkinson's" and traveled to New York with Holly Robinson-Peete in April '08 for the book launch. Robinson-Peete is the wife of former NFL quarterback Rodney Peete and daughter to Matt Robinson, the original Gordon on Sesame Street, who died of complications from Parkinson's. Lori was the "cover model" and feature story on the Fall '07 Texins Quarterly Texas Instruments internal publication. She was featured on the "Faces of Parkinson's" exhibit at the Young-Onset Parkinson Network conference in Atlanta in August of this year. Lori has been described as an "inspiration to so many" struggling with Young-Onset Parkinson's because of her determination to fight back against the devastating effects of Parkinson's disease by exercising, eating right, and lowering her stress. Lori has challenges with her balance, so we have found that riding a tandem bicycle allows her to experience the benefits of tandem cycling on Parkinson's symptoms and we get to spend time together.
Lori is an active 53 year old who happens to have Parkinson's, but she does not let it slow her down. Lori's mantra is "I may have Parkinson's, but Parkinson's does not have me". Her passion is giving back to the Parkinson's community, and has been blessed recently with so many opportunities to share her inspirational story to others affected by Parkinson's disease. At a time when there is so much hope from the research community regarding treatments and possible causes of Parkinson's disease which could lead to a cure, Lori recognizes that only through increased awareness will Parkinson's get the funding needed to advance the research being done. She also is keen to the suffering that Parkinson's patients and their families endure and is eager to encourage others and give them hope.
She taught 1st grade, was caregiver for her father in our home, interprets for the deaf at our Church, faux paints, rides a tandem bicycle, and plays the piano.
Notable: Sometimes referred to by scouts as “5-tool” guy. [Scouts were Boy Scouts; tools were those on his Swiss Army Knife.]
Quotable: “A Little League bench is the loneliest of lonely places. A guy won’t survive a season there without his ‘maginary friends.”
Posable: Known throughout Little League circles for plate discipline instilled in him very early by coaches realizing Gavin’s only real chance to reach base would be via walk. Ironically, “Good-Eye Gavin,” is remembered by teammate s for wearing “the thickest glasses this side of Harry Caray.”
Forbodable: Seemed baseball-clairvoyant at times. Often visualized images of “getting pelted out there” prior to entering in late innings (uncontested games only) only to find that his body would indeed be a magnet for line-drives.
Did You Know…able? Works in Commercial Real Estate industry in off-season. Also works there in-season, although no co-worker reported really seeing him working much at all.
Supposable: Purports to be predecessor of baseball’s Sabremetrics movement. Tired of being undervalued, created a stat he referred to as “Batter Chatter Factor”. Per formula, his own alternate chattering of “Hey, batter batter” and “Eh eh eh eh eh eh swing”, resulted in three to five additional wins in team’s epic pennant-run year.
Controllable: True value could be found in warming pitchers between innings and coercing mother to buy snowcones for team even after losses.
Historical: Regards defining moment as brashly “calling his shot”, then “cashing that check”. League records support said "called shot" - a ball tapped back to the mound, converted to an inning-ending, 1-2-3 double-play.
Personal: Resides in Richardson, TX with wife (25 - 42.6 demographic range), son and daughter (9 and 5, respectively). Enjoys most family activities, baseball, nachos, and the pursuit of knowledge – especially knowledge of the mystical harmony of the baseball and the nachos.
Some of you who follow me on Facebook may already know, but for those who do not I was diagnosed with Parkinson’s disease in April of 2013.
After suffering with severe nerve pain, undiagnosed and misdiagnosed symptoms for more than 15 years the news came after a special scan looked for dopamine in my brain and didn’t find much. That meant I was one of 60,000 people annually diagnosed with PD. My wife and I took the news with mixed emotions, mostly tears with a bit of relief, at least we knew.
I have for as long as I can remember had severe muscle cramps. I assumed it was because I worked out so hard as an athlete. I was told my body didn’t process electrolytes. I left minor league ball in my early twenties after having several elbow and shoulder surgeries, again I assumed overuse from baseball and football. Today I have had more than 30 surgeries mostly sports related and I have learned that severe muscle cramping and nerve pain are symptoms of PD. Most of my symptoms are non-motor and internal.
My neurologist told us recently that my earliest PD symptoms (left hand and arm weakness) had occurred in 1997. That was before I had tried out for baseball again. It makes sense to me now why after pitching a game in the MLB, I could hardly make my arm move to shampoo my hair.
My wife and I believe that God has great plans for us and although we do not understand this disease or why we are afflicted with it we know God’s got it all under control. (http://jimtherookiemorris.com/cant-shake-it-my-parkinsons-diagnosis/)
David was diagnosed with Parkinson’s Disease at the age of 48 in 2008. Like most other PD patients, he had symptoms for 2 to 3 years prior to his diagnosis. David did not have the telltale sign of resting tremors like most PD patients. However, David noticed rigidity in his muscles. Friends and family asked if he had back problems because he was walking very “stiff like.” Although David has had prior back problems after a motor vehicle accident, this stiffness was completely different. After numerous visits to Orthopaedic doctors with no results,
David finally met with a Neurosurgeon who diagnosed PD right away. After some trial and error with PD medications, David found the right formula and now is able to live a very active lifestyle including working full time. David is still able to enjoy cycling, going to the gym and camping. Through medication and exercise, the symptoms have improved tremendously. David’s advice for newly diagnosed PD patients is to STAY ACTIVE, continue your favorite activities and most importantly KEEP MOVING!
Information Coming Soon
Today is March 17, 2015. Two years ago I had my first tremor in my hand. An isolated incident I thought and didn’t think about it again. Six months later the tremors came in an instant. One minute I didn’t have them; the next minute I did. They barged in with their luggage and announced permanent residency. I was deftly afraid, scared and in a panic. After several rounds of tests, it was declared to be Essential Tremors. A neurological disease closely related to Parkinson’s, but not Parkinson’s. I’m placed on medication and everything calms down for a while…
One year ago I’m back in the neurologist’s office. I know it’s not going to be good. I tell her there are other signs. Slow movement, balance issues, shuffled walk, etc. It’s time to see a specialist. More specifically, a Movement Disorder Specialist. She tells me a Datscan will confirm whether it is Parkinson’s or Essential Tremors. I have my Datscan in May 2014 at Harris Methodist Hospital in Fort Worth. I request a copy of the x-rays. I analyze x-rays at work and when I looked at my results I could see instantly that the area in the brain that housed the dopamine was not glowing. It was gone. Missing. It was Parkinson’s. I was crushed.
What now? I don’t like doing things alone. I’m an engineer. A problem solver. I like to work in teams. I immediately sought out the Young Onset Parkinson’s Support Group and found instant friends. Friends who understand and together we shall help each other on our journey. Together we will raise the awareness of Parkinson’s. Together we will learn and share our knowledge of new advancements in drugs and technology. (e.g. Deep Brain Stimulation) Together we will raise money to fund the research necessary for these advancements. For without research, there can be no cure.
Why is Team Fox and raising money for research so important for me? Because I still have HOPE. I am only 43 years old. I have a wonderful husband and two beautiful kids who are only 5 and 10 years old. Before Parkinson’s I was a very active outdoors person. My passion was trail running. Running in the peaceful woods with my dogs, enjoying the beauty of nature. I was looking forward to the day my son was old enough to join me on these runs. And now that he can, I no longer can. And it makes me sad and angry. It makes me want to do something about it! I also used to kayak and mountain bike. I’ve hiked the Grand Canyon from rim-to-rim, I’ve hiked to Machu Picchu in Peru, and I’m am so thankful I did all these things while I was young, because I’m not sure I will ever do them again.
But I am hopeful…
I was diagnosed with Young Onset Parkinson’s Disease at the age of 38 back in 2000. The first several years were brutal, I just couldn’t get my head around the fact that I would be losing control of my body and the medication they gave me at first only increased my bad attitude and habits.
Ah, but with acceptance comes peace, and although my PD, is one of slow decline, after the first six or seven years and losing just about everything (luckily not my family), I was humbled, but I got off my can and started taking a different approach and although there still are many unexpected ups and downs, that continue to catch me off guard, such as having a stroke in 2007, I have found a fairly positive way to work through this and helping others has been the key. I try to help others almost to a fault, until it reaches the point of people taking advantage of my kindness. But I have always believed that The Michael J. Fox Foundation has the right path to finding a cure. Now there are other groups out there that teach us how to live through the disease that I will also support, such as the Brian Grant Foundation, and I do/will get back into the local support groups again. One’s spirit can overcome a lot of the bad, so yeah exercise and eating right is important, but having your head in the right place is always the first step to getting through any situation.
So this year (2015) will be my wife and I's 25th wedding anniversary. So to not give her the proper credit and respect for helping me get through this would be a complete oversight on my part. But think about it, to be married 25 years and less than half of it was spent as a normal married couple, and for her to still stand by me is nothing short of a miracle, That I will take any day. I also have two amazing kids that were 7 & 5, when I was diagnosed, so for them I can’t believe they ever remembered what I was like “Normal”. I have also been blessed with so many people in my life that have helped, which list is way too long to even begin to write, but hopefully they know who they are and what they have meant to me.
Information coming soon!
My name is Mike Voltin. I live in Murphy, TX and have been married to Mary for over 22 years. I was diagnosed with Parkinson's Disease at the age of 45. That was over 7 years ago. Months prior to the diagnosis, I noticed a twitch in one finger on my left hand. I thought it was stress. I kept telling myself that I didn't feel stressed out. I surely didn't think it was PD. I never thought that would happen to me.
When I look back growing up on a farm, it was a boy's dream. I drove combines, trucks, and tractors. I helped my parents with the farm work. My Mom and Dad, my four siblings, and myself, worked side by side. We all pitched in. At a minimum, we had to be ready to use a hoe, a shovel, a bucket, and a farm jack. When we got running water in our house on the farm, it was like hitting the lottery. Living on the farm conditioned us for life. There was most always work, but we learned that the most important part of life was our Faith and the value of family.
My wife and I have eight children. We have five daughters, and three boys. There are good days and bad days. I can look see ahead and I know that things will change. I can't keep that from happening. But what I can do is look back and remember the times I got into a dusty grain truck during milo harvesting season in July, and the steering wheel being too hot to touch, and no AC. I would drive the truck to the granary in Zabcikville, TX. Or the summer when I helped my Uncle Pete. He was a plumber. We put the plumbing in the foundation of a building, before the slab was poured, in Hearne, TX in the middle of July. Or the time I helped my grandfather build a barn for Quentin Adams in the first week of January, not far from Ratibor, TX. It had to be in the 30's with a small wind. And that was after it warmed up. We had a small fire on the ground. Too bad we were nailing corrugated metal on the roof. My fingers were numb most of the morning. I have to think that there is a reason we are faced with hardships in our lives.
There will be a cure. But in the meantime, we must stay conditioned and face this disease together.
I think I am the oldest “Young Onset” patient in our group, diagnosed at age 58, I am now 60. I feel quite lucky for this late start - I lived 58 years not knowing that I would face a progressive, degenerative, disease to which, so far anyway there is no cure. I did have symptoms for at least 3 years prior but I just thought I was getting old, slowing down, less social.
Since diagnosis, I have adapted, and I have made the most of what I CAN DO. I have always been an optimist and even now I remain positive, knowing full well my symptoms will get worse, not better over the long haul. Who am I kidding, it’s already worse. I may look fine to the casual observer, but honesty I feel like I am a slow motion, word slurring, expressionless zombie, off and on all day, every day, typing with someone else’s fingers. I am spaced out and startle easily. Thank goodness medicine keeps these symptoms to a functioning level. Exercise helps me maintain the strength, balance and flexibility to fight off rigidity, lack of balance and exhaustion. I try to focus on every move and word all the while I have trouble focusing.
I have real hope when I read all the ways the Michael J Fox Foundation is getting us closer to a cure. For me, the definition of a cure would be to stop the progression. I want more than that for my young friends with Parkinson’s. I am blessed to have met so many wonderful people because of Parkinson's Disease, and in most ways I feel like I am a better person for having it. I now feel gratitude for the little things and look for ways to live a fuller, happier, purposeful life. I thank my husband, sister and friends for the love and support. My Young Onset Parkinson's Disease support group, thank you!
I thank YOU for helping us Strike Out Parkinson’s.
Hi, I’m the wife and caregiver for the man I love most in this world, Jason, who just so happens to also have Parkinson’s Disease. I was 27 (and he was 33) when he got diagnosed. We were newly dating at the time but I was already head-over-heels in love with him. It’s been 4 years since then and we’re happily married and planning to start the next chapter of our lives (kids!).
In fact, I really don’t think of us as being any different than any other married couple. We live in an apartment with our dog and cat, we both have jobs, we make vacation plans, we divide holidays between both our families, we go on dates, we cry when the dog dies in a movie, we fight sometimes and always about the dumbest thing, and ultimately we love each other with all our hearts.
About the only thing different about us is we talk about drug-dosing, when he took his last meds, when they wore off, did he bring more meds with him, was he able to sleep straight through the night without his meds wearing off, when his next refill is due,… I sometimes help him stretch, or sign his name on forms, or button that one last button that doesn’t seem to go. You know, it’s all normal! :)
Certainly, though, I’d love to find a cure to Parkinson’s for my husband. He goes about every day with a positive attitude, letting very little get him down. But what I want for him, and for us, is to go about our lives without having to think about the drug dosing, without having to worry about what the future may hold. We know a cure is eminent. With your help, we can speed a cure for Parkinson’s! Please donate to Jason’s Team Fox page or participate with us to Strike Out Parkinson’s!
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