My name is Katja, I am 48 years old, married, I have 3 daughters and work part-time as a lawyer. I was diagnosed with Parkinson's disease 2 years ago
My name is Katja, I am 48 years old, married, I have 3 daughters and work part-time as a lawyer. I was diagnosed with Parkinson's disease 2 years ago.
Luckily! Because I noticed my first symptoms already 10 years before. But from the beginning: In the year 2010 I had more and more severe headaches on the left side and an annoying buzzing in my left ear.
I went from doctor to doctor, the headaches were diagnosed as trigeminal neuralgia, but the reason for the problems was not found for a long time. At least I ended up with an oral surgeon who told me that both of my temporomandibular joints were badly damaged. An operation was needed. The total rebuild of my jaw.
Even a trigger for the complaints was found – a bicycle accident at the age of 6. On April 11th in the year 2011 (World Parkinson Awareness Day!) the rebuild of my jaw started with a surgery that dures nearly 5 hours. And I wasn´t prepared for the things after waking up. My healing took longer than expected.
Today I am convinced that this trauma triggered the disease.
Shortly after the operation, I began to feel some discomfort. First my left arm, then my whole left side felt heavier than the right. Soon there was also pain. A lot of visits to orthopedists and neurologists followed, all without results. I was given physiotherapy, massages and acupuncture. None of this was successful.
My complaints increased, but were not visible from the outside. The doctors I consulted did not take me seriously. That was hard because I was in my early 40s, a mother of now 3 daughters and a lawyer, but in the presence of a doctor I felt helpless. I was advised to do more sports and to undergo psychotherapy. Even when my left little finger started shaking, they didn't take me seriously. I had been certified to be healthy. My body, however, signaled something completely different to me. That was a scary time, because I felt something was wrong, but I wasn't getting any help. My complaints became more and more severe, motor problems were added. But no one around me noticed the symptoms because they were very mild. But they were there. Although I was absolutely sure that my complaints were not based on psychological problems, I began psychotherapy, which lasted a total of 2 years.
Living with the feeling of imagining, being crazy, changes you. I have felt misunderstood. And I had fear. Every day. It makes you vulnerable. Your self-confidence is lost. At last, my search for an explanation lasted 10 years.
My diagnosis In March 2020, I suddenly could no longer type fluently with my left hand. That was the moment when even an outsider had to see that something was wrong. I made one last attempt and consulted a doctor in a nearby hospital. My husband went with me, since I no longer dared to go near a doctor alone.
The examination by Dr. E. lasted half an hour and then she slammed the diagnosis in front of my feet. Parkinsons Disease... For me, at the very first moment, it was only one thing: relief.
Finally, I had a name. And finally I knew what I had been fighting for so long.
My way to deal with the disease A friend told me something that made me laugh. "When life gives you a cactus, you don´t have to sit on it." This was my lightbulb moment. Because I decided not to sit on my cactus. Sometimes it just takes the right friend with the right words. These words marked a milestone. My fighting spirit was back. It is he note of my life. After my diagnosis, "Why me?" was not a thought. Quite the opposite. It was rather the realization "Why not me?".
Millions of people suffer from terrible diseases and the realization that on that March 10, 2020, I was not the only one to receive what was at first a devastating diagnosis took away its exclusive horror. I was and I am one of many. A member of the "neurological disorder family." I would also rather be a member of the "Knights Grand Cross of the Order of the British Empire", but in my association I have met many admirable, unique and courageous people. All these people have one thing in common. Their special view of life, as only a sick person can have it. They try to accept their fate and face it with an open mind. This takes a lot of courage. It is one of the bravest things you can face. I am blessed to have been able to meet them. In the last two years I have lived more intensively than in the last 10.
I look for challenges (e.g. in paragliding despite my fear of heights) and take the days as they come. Maybe - for sure - Parkinson's is taking away my motor skills. But certainly not my joy in life.
I am retired and was diagnosed in 2016. Never letting Parkinson's stop me. Here is my story
I was diagnosed back in June 2016 in Winchester England by Professor Christopher Kipps.
My medical history of issues with balance, depression, constipation, muscle stiffness go back two to five years previous.
At diagnosis I was sixty. I was still working as a support engineer foe a well know electronics manufacturer.
Just before the Christmas 2015 I personally had through a process of illumination come to realise I might have Parkinson’s. So that Christmas I said to myself the new year resolution was to sort out a diagnosis one way or another. I had been to the doctors several times with bad balance issues. They even sent me to a vestibular rehabilitation course! Other symptoms like fatigue, constipation and depression all treated by the doctors separately. It took me living in my own body to put it all together. Dr Google kept coming up with Parkinson’s!
So when Professor Kipps took less than 5mins to come up with the initial diagnosis it was a relief. It was like a rebirth. My attitude was ok I have Parkinson’s now let’s get on with it and deal with it.
Professor Kipps told me I’d benefit from some specialist physio. He prescribed Madopar which was amazing the first couple of doses. It immediately relieved my stiff legs.
I set about from that point gathering around me a support network. I arrange to see a Neuro physio. From these sessions I was introduced to a local PD Warrior group and started to attend weekly.
I told all my friends and family of my diagnosis. Not for any sympathy reason but to help them be informed of the disease.
I informed my employer who was very understanding and helpful.
I continued to work for a time until I realised one day I could not carry on. It was not good for me and not good for the company. So I retired on the medical insurance provided by the company.
Two years later I reached state pension age and officially retired. In the six years since diagnosis I have seen a steady deterioration with symptoms getting worse. Stiffness, tremor, slowness and many many non motor symptoms getting worse. The main being my autonomic system. Overheating being the worse. Cramps, dystonia, memory loss all giving me issues. Despite this I remain positive, adjusting my life to allow me to do things I love and love the things I do.
I now own and run Shaky Radio which helps others with Parkinson’s and spreads the awareness of the disease. We have listeners and visitors to our websites from all over the world. My thoughts are that if just one person in the world gets some info or comfort from it. Then it’s all worth it.
Each day is a new day with Parkinson’s. Hour by hour can be different with symptoms, effects coming and going. It’s unpredictability makes life interesting and challenging. I try to not let it affect me emotionally but ride with its constant waves of change. Adapting my life to overcome what ever it throws at me.
Retired Registered Nurse (RN)
Since childhood, I have had chronic Anemia, Constipation, & Insomnia.
Since my early teens have had Anxiety.
Since my early 20’s I have been diagnosed with Depression, Insomnia, Chronic Pain (related to having been victim in 6 Motor Vehicle Accidents, resulting in Neck & Back (with Fractured L4,L5 vertebrae), Multiple Frozen Shoulders, Hips, Knees, Ankles, & Feet.
Since 2006 (age 45), I began to have a mild tremor in my Right hand and was diagnosed by a Neurologist with Essential Tremor (ET). My tremor remained the same and did not require any medications. Since the time of my ET diagnosis, I seemed to have one medical issue after another.
Between my ET diagnosis in 2006 and 2020 I was also diagnosed with: Fibromyalgia (Muscle/Joint pain & stiffness, Brain fog), Chronic Fatigue Syndrome, Esophageal spasm, Dysphagia (swallowing difficulty), Hiatal Hernia, Diabetes Type 2, Hypothyroidism, Jaw pain (TMJ), Neuropathy of my feet, Carpal Tunnel Syndrome, Kidney stones, & Urinary dysfunction.
At the beginning of 2020, I began to have Memory & Cognition issues. People made comments that they couldn’t hear me or understand me on the phone.
Mid-2020, my Right hand tremor began to worsen. The facility where I work closed down & I was laid off and started on unemployment. My Primary Care Provider had me try the 1st ET medication, which I had to stop after a month, due to intolerable side effects. After trying the 2nd ET medication, for 6 weeks, I had to stop it.
By the end of 2020, I was having Vertigo, Orthostatic Hypotension, I felt like I was trying to walk in thick mud, my Right foot toes would drag & scuff the ground when I walked, Postural instability with multiple Falls. I was so stiff I could hardly get out of bed & stand up, slowly shuffling like the Tin Man to the bathroom (not always making it in time). I was having tremors in both arms & both legs, I felt very uncoordinated & seemed I was tripping all the time & dropping everything. I could no longer write, just a big scribbled mess. My Right arm and leg would have spasmodic jerking when lying in bed, I had hyper-reflexes to unexpected sounds like car horns, phone ringing, & whatever was in my hands would fly out of my hands. I had Visual-Spatial issues & couldn’t judge my distance or speed.
My Memory & Cognition were getting significantly worse, having difficulty finding words, my speech was slurred & garbled. When I had an episode of not knowing where I was, in very familiar part of our small community, I decided I was no longer safe to drive. I didn’t want to be responsible for hurting anyone else. That was the last time I drove & have since given up my Nursing & Driver’s licenses.
I thought that I must have a brain tumor with my symptoms worsening so fast. My PCP ordered a long list of lab tests & a Brain MRI. All was normal. She sent me to a Neurologist who ordered a DaTscan & referred me to the University of Washington Movement Disorders Clinic, telling me she was seeing many symptoms which she was suspecting was Parkinsonism. She started me on Carbidopa-Levodopa (C/L), which improved my tremor and several other symptoms with the 1st dose, after 4 days I could write a fairly legible grocery list. When I saw the Movement Disorders Specialist, after a thorough 2 hour review of my medical history, & examination, told me that my positive response to the C/L is the best test for Parkinson’s disease & that I didn’t need the DaTscan. She said she believes I have probably had Parkinson’s for quite some time, estimating I was in the middle stage 3. I had Physical Therapy to help with my balance & gait, but I still have to use a cane when walking.
My handwriting is now so small I can’t read it. I have had a few dosing adjustments over this past year, but the C/L is still working well. I now follow-up every 3 months alternating with my Neurologist & MDS. This past year has been a life-changing one. I have joined several support groups. “Living with Parkinson’s” Facebook support group has been the most helpful for me, with weekly guest speakers including a Parkinson’s Nurse Specialist, Other Parkinson’s related professionals discussing other topics such as Exercise, Meditation, & How to live better with Parkinson’s. I’ve watched webinars from Parkinson’s Foundation, Davis Phinney Parkinisons Foundation, & Michael J. Fox Foundation. I read everything I can about Parkinsons, participate in a Parkinson’s book club, Yoga for Movement Disorders, Online Parkinsons classes in Exercise & Dance, Meditation, Tai Chi, Walk on my treadmill, & ride my stationary bike. I have a supportive husband & we are adjusting to having different roles. I have very supportive family & friends. With Parkinson’s, I never know what my day will look like,
I do the best I can with each day & don’t feel bad about the days I need to just rest. One day at a Time!