Parkinson’s disease often isolates individuals, but we believe every one connected to PD has a story to tell. This disease affects each of us in unique ways, and together we are making our voices heard. Thank you for sharing your story. Our goal is to have at least 500 stories before Sept. 1, 2012.
We want to hear your story. Tell us how Parkinson’s disease has affected your life or the life of a loved one. Share your story in the space below, and take a look at what others have shared about their experiences with Parkinson’s disease. View stories by clicking on the orange spots above.
Hi, my name is Stacy Williams and I became involved with Parkinson’s disease when my mother was diagnosed. My mother, Jeri Hanel was diagnosed around the age of 50. I began volunteering at Parkinson related events several years after that and eventually I was approached by a group of people asking me if I would be interested in serving on the board for the Parkinson Association of MN, which is now, National Parkinson Foundation Minnesota. My mother received deep brain stimulation about 4 yrs ago and she is still working currently as a nurse in the public schools. She is a very determined woman and an inspiration to me.
My father, Gary Burkart, was diagnosed with Parkinson’s disease (PD) in 1999 at age 59. The disease has been both a blessing and a curse. A curse as a result of the negative health implications but a blessing because it has brought us closer together as a common cause.
Dad is doing okay although his health continues to deteriorate. We’re witnessing the same degradation we see with others who have PD. It is an arduous walk.
Shortly after his diagnosis we became involved with the Parkinson Association of Minnesota (PAM) and the National Parkinson Foundation. Dad became active in a local Parkinson’s disease (PD) support group near his home in Wisconsin and I joined the board of PAM. Both have been blessings for the people and the knowledge.
We attend conferences and seminars and stay current on PD developments. Heredity is an issue we discuss. The research goes both ways on this.
My dad and I are very close and work together to combat the disease. I have raised thousands of dollars for Parkinson’s disease by skydiving(http://www.perfectjumps.com). I raised $48,000 in 2008 by jumping 100 times in one day and $68,000 in 2010 by jumping 150 times in one day and we had tremendous media coverage for both events.
I have over 1300 skydives and I placed 7th at the US Nationals in 2006 as a member of Fast Forward, a 4-way Formation skydiving team that won the Open Division of the Northern Plains Skydiving League. Now we’re going for 300 skydives in a day on June 19th, 2012. I would appreciate your support as I combine two passions of mine: skydiving and working to improve the lives and find a cure for those afflicted with Parkinson’s disease.
As the younger of my two sons prepares to graduate from middle school in June 2011, I am stressing out over a day which, when I received my diagnosis of Parkinson’s disease (PD) in 1998, I thought I might not live to see.
It has suddenly hit me that at 47, I have been diagnosed with PD for more than one-quarter of my life! I noticed my first symptoms a few weeks after Bennett was born so he has never known me without Parkinson’s. Alex was only five years old, so he does not remember much about our family pre-PD. This is certainly not how I had planned that things would turn out!
As strange as it may seem, I think that we are all better people because of it. If you are newly diagnosed and are reading this, you may find that hard to believe, but for me, it is true.
My mother, Sharon Ryan-Olin, was diagnosed with Parkinson’s disease in 2006 when shew as in her mid-40s. At the time she was diagnosed, I was starting college and was struggling with declaring a major. My mom’s diagnosis prompted me to major in Public and Non-Profit Management and become active in the PD community.
At age 23, I sit on the Board of Directors for the National Parkinson Foundation Minnesota and work to make community connections, raise funds for research and Parkinson’s support programs, and be a voice for families.
My mom, sister and I went to Washington D.C. at the end of February this year to meet with legislators from Wisconsin and Minnesota. We shared information about how Parkinson’s affects their constituents. The forum was hosted by the Parkinson’s Action Network and while I was there, they presented me with the Louis Fishman Advocacy Award for exemplifying the best of advocacy in the Parkinson’s community.
My journey with Parkinson’s disease began 31 years ago when my dad was diagnosed at the age of 48. The 25 years that Dad lived with PD was a roller coaster ride, but he showed us how to live well and to never give up. Keeping active, having a positive attitude and participating in activities he loved (golf, bowling, bocce ball, swimming, etc) kept him going, even through the tough times. My dad was an inspiration!
For me, a positive side effect of my dad having PD has been my involvement with the Parkinson’s community through my volunteering. I have been involved with National Parkinson Foundation Minnesota (Parkinson Association of Minnesota) for 14 years and during that time I have met many wonderful people; many that have become friends. I am grateful for each and every one that I have met along the way.
My very good friend, Terry Lape, was diagnosed, in his 50′s, with Parkinson’s Disease, a couple years back. Terry worked for me in the US Navy in the mid 1970′s. Terry is a terrific guy, a patriotic American, a talented Jazz musician and guitarist, and a loving father. Jazz (and his kids) are his life, and PD is now his biggest life challenge. He faces every day with great courage, super optimism, and a “can do” attitude, just like when he served his country in the 70′s. I am grateful too, for the Parkinson Foundation, and all that they do for the people suffering from this disease.
Just an Ordinary Man’s Perspective of Living with Parkinson’s disease.
When the average person hears the words “Parkinson’s Disease”, the first thing that comes to mind is an elderly man or woman sitting in a nursing home unable to care for themselves due to “the shakes”. Although most people vision this scenario, a lot of times, their vision is far from the truth. Most sufferers of Parkinson’s disease, or PD, live an active life and aren’t necessarily elderly and don’t suffer from t9he tremors. Early onset PD affects thousands of people in their 40′s, 30′s, and even 20′s.
Shaking, or tremors, is not the only outward or dominant Symptom of PD. Tremors, joint stiffness, difficulty speaking clearly, difficulty swallowing, frequent chocking, trouble walking, frequent falling, and being unable to care for one’s self are all symptoms of PD. Generally, PD sufferers can have all or even just one of these symptoms. Each PD case is uniquely different. No two people suffer the same symptoms due to body chemistry, exposure to chemicals, family history, DNA makeup and other factors. PD also can be right or left sided depending on which side of the brain stops producing a chemical called Dopamine which aids the body with fluid, smooth movements. These right or left sided symptoms can give way to both sides being affected. Adding all the variables together are what makes PD rather difficult to diagnose.
Once diagnosed with PD, sufferers are on a lifetime journey of doctor visits, drug treatments that continually increase in strength, therapies, and even brain surgeries. PD will never go away, it continually attacks the brain and the symptoms become worse with each passing day. In some people, the progression is slow while in others the progression happens rather quickly. Support groups along with a caring support base from family and friends definitely help because of the depression issues most people with PD face. Neurologists now have many drugs and other procedures to use in the fight against PD. Most of the drugs are a synthetic Dopamine to reduce the tremors and rigidity. These drugs work well for a while, but the body builds a tolerance to these drugs. More of these drugs must be taken in order for the desired effects, and the more taken, the more side effects occur. Once the maximum dosage is reached, there is little in the way of further treatment. Within the last 15 years, a new treatment has been developed called “deep brain stimulation”. In the 6-8 hour operation, holes are drilled into the skull. Electrodes are placed in a certain location and the power is turned on. This procedure works well and cuts down the need for some of the medication. But, like the drugs, the DBS treatment does have its limitations also, being PD is Progressive. When patients reach the end of their treatment, all that can be done is to make the patient as comfortable as possible.
Parkinson’s does not discriminate either. Some very famous people have contracted PD. Mohammed Ali, and Michael J. Fox are among the few that have the disease and also are strong advocates for the cure and prevention of PD, although some of the tactics they support are questionable, for example, stem cell research. Stem cell research is a very controversial and emotional form of research that takes stem cells from embryos and uses them to produce cells that help those with PD. But this is all experimental and those with PD must use traditional ways to deal with their disease.
This is an average daily routine a person with PD must live through. Remember, this is just an average routine and lots of variables affect the day to day symptoms of PD such as weather, stress, physical activity and the like. Also there is the “ON days and the OFF days. If you are friends with or have ever heard someone with PD say “I’m off today”, this means the drugs are not helping much. ON days start out outnumbering OFF days by 5 to 1 but as the disease progresses, the opposite occurs. OFF days far outnumber ON days. The day begins by taking 4 Carbo/levo pills that must be taken at least 30 minutes prior to eating breakfast. Then comes the regular routine of shaving, showering and the like. Most people just breeze through these activities but people with PD need to think every move through and often need help completing these activities. Next, breakfast time. More pills need to be taken now due to these need to be taken with food. Trihexyphen, Pramipexole, a multi vitamin and other meds are taken now. Long about ten A.M., the tremors start to decrease if only a little. But the pain of muscle stiffness and the fatigue of the morning are beginning to take its toll. At eleven, 3 more Carbo/levo pills need to be taken and plans for dinner must be made. At noon, more Trihexyphen and Pramipexole and aspirins are taken. By mid afternoon, between the meds and the ever draining stiffness and tremors, a nap is usually needed. But it’s a short nap cause at 3PM, 3 more Carbo/levo pills are due. At Suppertime, more pills are taken and these are the same ones taken at breakfast and dinner. Then at bedtime, Lexapro is taken because patients often suffer from depression. On top of the regular meds, other meds are taken to help reduce the pain and stiffness like Flexeril, Tylenol, and other pain meds.
To live a life that is half way normal, all these meds need to be taken. The worst part of these meds is the cost. If a PD sufferer does not have insurance or are well off or are lucky enough to have the state to help them out, money problems can be unbearable. At times it comes down to buying meds or keeping a roof over their head. Then there are the doctor’s visits and neurologists visits that need to be paid for. PD, like so many deceases, is definitely not a poor man’s disease.
Going out in public is a totally different story, especially on an OFF day. People stare and whisper and little children often laugh at the tremors. Often complete strangers will walk up and say something about one of their relatives having PD and how they treated PD and even how they died from it. Restaurants are tough to go to also. Tremors can make picking up a cup of coffee a messy situation or having someone cut up food and/or being fed. This creates embarrassing situations that cause further depression.
Again, PD patients need a firm foundation of understanding to help them though the tough times they will be faced with soon. This begins at home and also their circle of friends helps a lot with positive feedback. One of the best ways is to join a support group. If there isn’t a support group in your area, consider starting one yourself. For many years PD sufferers had to contend with all the side effects of having PD all alone because PD was the “silent decease”. Now with proper education and treatment, anyone can learn how to live a more normal life with Parkinson’s.
My mother is 80. She has had PD for last 8years. She has tremors on left hand. One thing that is really bothering her and scares her, is the severe body weakness, pain on left ear and numbness on left side. Is body weakness and feeling that she is dying related to parkinson? None of the doctors can tell.
Thanks.
Hi Jill,
I recommend you call the National Parkinson’s Foundation’s information line. The phone number is 1-800-473-4636 (800 4PD info.) You may also ask others on the NPF’s Ask the Doctor site. People with Parkinson’s, caregivers and others contribute to the discussion. That website is http://www.parkinson.org
I was walking my daily route (2 miles) at approx. age 38 with my australian shepherd “Belle” and my left knee started to collapse on and off so I thought that was strange. I ignored the weakness in the left leg and increased exercise,strength training. I went for a couple of years with the left leg weakness then at age 41 I began having migraines ( left sided) and a small tremor of my left hand. I went for numerous CT scans, MRI scans, Spine scans ( only few cervical bulging discs found) and blood work. The neurologists were thinking MS but it wasn’t, and they couldn’t figure my symptoms out. I had some Parkinson’s symptoms but I was a “Mystery” case. I then began having falls. I could no longer go on long walks and so I continued with my at home strength training. Then I found I was not walking well ( left sided weakness, left sided tremors got worse). The specialist at Emory gave me Sinemet ( carbidopa-levodopa) and to my amazement the tremors stopped and I could walk better. I was diagnosed with an atypical form of Parkinson’s. My family has moved around because of being in the military so finding support groups can be challenging. I go to a water-therapy and I try to keep as mobile as I can. The medications are life changing but at the same time cause fatigue and side effects one of which is nausea. I am now 46 and had a bad fall 3 yrs. ago which caused a painful disc tear/L-5 DD in my low back. I have had numerous epidural steroid injections to control pain and now I have to deal with Parkinson’s and a back injury. I sometimes feel old before my time but thankful I can still function. I am now living in Dover De( kind of rural out here) and looking for a support group. My grandfather had a twin brother who was diagnosed with Parkinson’s and also a family history of Huntington’s disease.. I was tested for Huntington’s and was thankfully negative. Life has it’s ups and downs when you deal with chronic illness, chronic pain from injury but with my walking cane, water therapy and medications I keep on going full speed ahead even if it is at the speed of a turtle! The actor, Michael J. Fox who was diagnosed with Parkinson’s at age 30 is an inspiration to me and to so many people who suffer with movement disorders.
My name is Darla. My mother is 67 and has been diagnosed with PD for 10 years. She has typical symptoms and severe dementia. My grandfather was diagnosed at 73 and spent the last 7 years of his life in a nursing home. My uncle will be 60 this month and was diagnosed with Dementia with Lewy Bodies about 3 years ago, and the disease has progressed quickly. My grandfather might have had Dementia with Lewy Bodies because he progressed much like my uncle has. My mother would like to donate her brain to science but I haven’t found a place willing to take it because she hasn’t been part of any research trials. Columbia refused, the Parkinson’s Institute of California will take it if we pay the autopsy fees and the Fox Foundation isn’t involved in brain and tissue donor banks. All they did was send me a list, really no help at all. I think that it should be made more aware that to DONATE a brain to science for research is very difficult. Had we known, my mom could have been part of a trial. Maybe some of the money from the walk could be set up into brain donation grants to help other families like mine. I feel like all of my family’s suffering will be in vain because we can’t help anyone else. I have participated in the walk for the past 5 years but find myself unable to do so this year because of all the money going to research, I still can’t find a place willing to take my mother’s brain. I plan on writing to the head of the NPFM, the Star Tribune and Burt.
Hi! My husband, now 34 years old, was diagnosed at age 16. It has been had for him to rely on doing everything by himself but thankfully, 4 years ago he got the DBS surgery. He’s feeling much better and as any PD patient has his moments. Right now it got to the point of needing a scooter to be able to do some housekeeping. We got a dog, which has helped him to deal with some depression issues.
Part of what makes him amazing is that, even though h has PD, he works as a Graphic Designer and today we launched a website for PD patients of Puerto Rico in spanish http://www.parkinsonpr.com
I was diagnosed 17 years ago when I was 33 years old. I am lucky in that the meds worked a long time for me. Now it is time for me to have Deep Brain stimulation surgery. I will have the surgery in 6 weeks. I just want to strongly encourage everyone especially those like me with PD to exercise, exercise and stay physically fit as much as you can. When I was newly diagnosed I was lucky to have a woman who also had PD give me this advice. She said “Go earn your blackbelt!” I did! I feel it has done so much for me to keep me as healthy as I can be. Now I am at a point that I take a lot of meds that are not working as well as they did BUT they gave me time, precious time that new treatments such as this surgery has been developed. Time to raise my 3 girls and now I even have 2 amazing grandsons! My biggest hope is that this surgery will work for me as well as it has for others and again give me more time. Who knows when a cure or better treatments will be discovered?! I hope this story helps someone out there. PD can be so overwhelming but never give up!
I was diagnosed with Parkinson’s in 2002. Frankly, I really could have cared less about my health until mid-2011, when my best buddy’s Dad was diagnosed with PD also. It was tearing him up inside, as he and is Dad worked side by side daily. They were best friends, and his best friend’s health was deteriorating right before his eyes. We would talk on the phone several times a week in the early stages. That’s when I realized that this situation could be similar to mine: it wasn’t just about me, but it was about my kids, my kids’ mother, my parents, my siblings, my company, my co-workers. I decided that I needed to understand my own situation better. Until then, my health was simply a pain the butt, it was inconvenient, not the show-stopper that everyone else faces. I was different.
Though I had been treated through the University of Minnesota Neurological Clinic since 2003, I decided to make an appointment at Mayo Clinic. I’d been commuting from the SW Minneapolis suburbs to Rochester daily since Fall, 2008 for work, yet I never pulled the trigger on a Mayo visit until November, 2011. At the time of my visit, I was consuming upwards of 25 tablets a day covering 7 different meds. I was taking meds for narcolepsy, insomnia, depression, 3 PD meds, multi-vitamins. First thing in the morning, 3 times a day, twice a day, every 3 hours during waking hours, just before bedtime……I didn’t really know whether I was coming or going, but I did know this: many people were concerned, my job performance was declining, I was endangering commuters every day I drove to work and back, and I was losing control.
4 days before my Mayo appointment, I stopped taking all my medications. I wanted to find out what the real Mike Fahning was all about. By the afternoon of my appointment, my brothers were pushing me around Mayo Clinic in a wheelchair. I couldn’t walk, my speech was sometimes not understandable, and my arms were pretty much disfunctional.
After a 1 1/2 days at Mayo, I walked out with a new medication routine with a drug and dosage I had been on several years back. After a couple weeks, I felt like a new person.
Shortly after Jan 1, 2012, I took my neurologists’ recommendation and retired. I was a CFO for an automotive group in Rochester, commuting 5000 miles per month to work 50+ hours a week. When you can’t see the forest from the trees, it didn’t seem like a lot, but coupled with up to 20 hours in the car each week, it was too much for me to handle.
In the meantime, I had joined a PD support group in Minneapolis. I met a “Parkie” there who had started a non-profit called “Pedal, Roll, and Stroll for Parkinson’s”. Liz Ogrene had a story similar to mine, and created this group to bring awareness to the disease, get her fellow Parkies outside and active, and educate people on the benefits of biking, Nordic walking, and walking. She started an annual 3 1/2 mile walk around a small lake in Prior Lake, and almost 200 people joined together to pedal, roll, and stroll.
Liz asked me to join her Board of Directors, and help bring the message to the masses, promoting biking. We are currently trying to set up bike clubs in Rochester, Mankato, and Brainerd.
A few short weeks after “retirement”, I started some Automotive consulting, working about 12-15 hours a week. I’m involved in a business I love, working in an active, ever hanging environment, but under terms that I can better control: the house, the workload, the stress.
I’ve also met some great friends through biking and social networking. My bike cronies have pushed me over the 100-mile per week biking routine a few times now, so bike outings of 30+ miles a morning are not uncommon.
The one thing about biking and my Parkinson’s is this: it doesn’t matter if my symptoms are heightened, my meds wear off, my mood is crabby. Biking is the calming effect on my body, my spirit, my outlook on life.
If there is one thing I know for sure, it’s this: “We encounter people in our lives every day for a reason. It may not be clear at the time, but the reason will be revealed at some point in your life. Whether it’s for a day, a week, a month, or lifetime, I am a better person today because of the interaction I’ve had with you. Thanks. I needed that.”