This is Marit’s Parkinson’s Story and Asthma Story. I call her story a #Chrillog, which stands for “chronic illness weblogs,” in which we look at our journeys through a nervous system and trauma lens.
My name is Marit, I am 58 years old and I live in Norway. I worked as a nurse for 26 years and when my Parkinson’s started, I was working in my dream job on a ship with a working schedule of 2 weeks on, 4 weeks off. I had to stop working two years after the diagnosis due to symptoms of stiffness, slow movements, bad sleep and lots of side effects from the dopamine agonist medication.
I have had asthma since I was a baby. My asthma has much improved, and I stopped lifelong medications. I don’t get flares anymore and only take some medications now and then.
My Parkinson’s is much improved and I have decreased my medication. Both of these big changes come from healing old trauma.
I’m still healing and try to listen to what’s good for me. My hope and dreams are, if I share my story, that my efforts can be an inspiration or help for other people.
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I was taking a self development course and we went into how I felt and reacted to different experiences and situations during childhood. I could easily see that my way of reacting to many situations that brought up similar feelings were exactly the same as in childhood. Many times I felt I gave up, was victimized and felt neither seen, heard or acknowledged.
Memories of these situations seemed to pop up now and then and I was lucky to have my friend and some other students from the development course to speak with about this. Understanding how these experiences which caused me to give up and gave me the feeling of helplessness had affected me, brought me clarity and awareness so that healing could take place.
I developed asthma when I was 3 weeks old. After I was diagnosed I had to take medication every day.
I was hospitalized several times during childhood. My parents weren’t allowed in the hospital with me, as was common in the sixties.
I was doing inner work remembering leaving my body several times during hospitalizations from 3-6 years old. I remember one time, I was almost 5 years old, it was a foggy and rainy December night when I felt I couldn’t breathe anymore, was getting more and more blue and out of breath, so my parents took me to hospital. The doctors gave me several shots with adrenaline, but I gave up and ‘died’.
My cousin was a nurse at the local hospital and she was calling upon me, hitting me and giving me even more adrenaline, so she became the reason I decided to ‘come back’ to the bed instead of just dying. This incident and one more when I was about one year old left alone in a cold metal hospital bed, forced to take medication, a bad tasting syrup, made me give up fighting. I resigned.
Remembering this and many more incidents, going through the memories and ‘reversing’ my giving up and doing inner child work helped me recover. I had to let go taking the responsibility for blaming myself being the reason for my parents’ anxiety. My life up to about one year ago was to always be at service for my parents. I have had to work with myself trying to be visible and loved for whom I am.
My asthma was most severe in my childhood, especially up to eleven years old when I had to go to a ‘sanatorium’ in the mountains for three months and started using inhalers and cortisone [a steroid, which is the most potent anti-inflammatory].
I became gradually better after the sanitorium and was finally able to move and could try out outdoor activities and sports. I often felt alone in my childhood, being left out in activities and play due to asthma flares.
I was on lifelong medications for asthma until 2018. Medication I use occasionally for my asthma is Salbutamol (bronchodilater). I’ve stopped using steroids.
My Parkinson’s started in 2011 after my 2nd divorce. I was 49 years old.
We now know that my Parkinson’s had been present for a long time before the symptoms came, maybe as long as 10-20 years before the diagnosis.
My symptoms began with my right foot. It would shake when I was sitting in a chair and when going to the toilet, and after some time I wasn’t able to jog anymore.
Exercises to gain my strength back in my right foot helped a little, but my foot kept being slow.
After a year or so my right hand started being slow and my writing was getting worse. I worked at that time as a nurse on a big ship. During my off periods I sometimes put in extra shifts in the emergency ward in the local hospital. One year before I was diagnosed I stopped taking extra shifts because my hand was so slow I didn’t feel I could do my job properly.
I blamed myself for this and never told anyone. I thought I was exhausted due to my second divorce and felt a lot if guilt not being able to be a good wife and mother.
At first, Requip, a dopamine agonist, really helped my symptoms and I could continue working. After a year or so I found myself being more manic and as if my personal filter towards spending money on shopping, writing, making music and doing hobbies in a way was gone. I slept very little at that time, only a few hours each night and was constantly involved in some activity.
In January 2017, after taking this medication for 5 years, I was miserable. I had trouble walking, fell easily asleep if I sat down during the day and wasn’t able to get groceries or make my own dinner. I was hallucinating (I didn’t understand that until later) and my head was spinning around being jealous at my spouse, and even thought my kids and family had an alliance against me. I felt desperate and therefore decided to quit this medicine as a final desperate action.
My neurologist agreed and I changed from the dopamine agonist Requip to levodopa Madopar. For three weeks I had all the withdrawal symptoms you can imagine: nausea, shivering, difficulty walking, unable to drive, couldn’t prepare food, and hallucinating a lot.
I felt shame and very much alone during this time, just like I used to in my childhood.
Luckily, after three months my symptoms disappeared gradually and I could start interacting with people again.
I used to be in a lot of pain when I woke up in the morning. Now I have no pain. I am slow and my body moves slowly, but I can do yoga without problems even before taking medication.
I have reduced since my medication a lot and I think I might reduce it even further.
I was 3700 grams at birth (8 pounds 15 ounces). My mother had a lot of stress when she was pregnant with me. She was up most nights with a sick sibling of mine and felt sick during pregnancy. My father was a hard working man, attending his work in the day and spending all his free time building a house for the family. We moved in just before I was born. It was a difficult and long birth and my mother couldn’t breast-feed more than a few months.
I experienced some serious events when I was a teenager. I always felt I had myself to blame for this, but after spending years doing inner work about this issue I can finally say I now feel free.
My adverse childhood experiences (ACE) score is 1 for emotional neglect. It does not include the above events, which do not fit the ACE questions.
Part of the story is that I got a divorce from my husband in 1999, remarried in 2002 and got another divorce in 2009. My life up to my second divorce was one when I never was authentic and spoke about my inner feelings. I always felt like an outsider, and never seemed to fit in.
No one else in my family has Parkinson’s. Many have milk allergies and one has an autoimmune disease.
Question: For some people, Parkinson’s starts in the arm or leg where they once had an injury. Did you ever experience trauma in your right foot, where your symptoms of Parkinson’s first started?
Yes. I had an injury in my right leg during my stay in Canada in 1980-82 when I was 19. I jumped down from a stair, drunk, twisted my ankle and had to have a cast for 6 weeks.
Shame and guilt were my feelings when this happened. And it made so many things happen. I needed help to come to the hospital, the doctors in the hospital let me wait for a long time due to me smelling of alcohol.
You might call it becoming aware, by doing inner child work and putting words to my feelings and aggression while remembering difficult events from the past.
It has also helped me understand why I have felt guilt and understanding the mechanism of how harmful it is to always try to keep secrets and not showing how I really felt. I was always the tough girl who never showed I was in pain or cried to be cuddled.
Many of my symptoms of Parkinson’s (after onset) came from being afraid of the future, afraid that I wouldn’t be able to move and afraid of not being able to take care of myself. I took up yoga as a regular practice in 2016, and in 2017 I traveled to India with a friend and became even more inspired to continue doing yoga. I’m sure this helped me with being grounded, helped my body to heal and kept me from going crazy.
I was divorced twice. After my children left home I met a real nice man. He showed me so much interest, but I kept him distant and didn’t want to be involved. After two years I gave in to this light-minded happy person, fell in love and he has taught me unconditional love, which I knew nothing about before.
Four years ago I connected with a woman during a course in self development. She had an inner drive to resolve her traumas from the past and we have spent hours and hours communicating on Skype. We have opened up to each other by sharing stories and supported each other’s healing. She had breast cancer and has been healing from fatigue after chemo. We’ve done some amazing work helping each other. I have felt safe and trusted her.
By connecting to her and my new spouse I now feel safe and don’t feel so alone anymore.
Going through the memories, how I “reversed” my “giving up” when I was hospitalized for asthma, and doing inner child work have helped me recover. I had to let go of taking the responsibility for blaming myself as the reason for other people not having a good life.
The following have been important for my healing:
- Consciousness and awareness of the traumas
- Trauma work / inner child work in a safe environment with a supportive helper
- Meditation and yoga has helped me in being more clear in my head and relaxed in my body
- Intermittent fasting, which does a lot of good things such as autophagy, seems to play an important role. Eating whole food, less sugar and carbohydrates makes me feel much better and makes me feel more flexible.
- Going for frequent Massages has been a self loving and caring act which has helped me to learn to receive and feel good.
Additional resources as of February 2021:
- Being unconditionally loved by my spouse, the feeling of being safe when I am me. I feel safe being authentic.
- My friend from the self development course has become my best and most trusted friend. For the first time in my life I have a friend whom I can tell anything. She never reacts badly to whatever I tell. I don’t feel shame or guilt telling her my thoughts. She makes me feel ‘normal’, she accepts fully how I am and therefore it’s so much more easy for me to like myself. I speak to her regularly several times a week.
- I go for walks in nature every day with my dog. This makes me relaxed and in good shape, and I bond with my dog.
- I used to have a labrador dog for 13.5 years before she died. I missed her a lot and got myself a labradoodle 9 months afterwards. Having a dog gives meaning to my everyday life and she makes me very happy.
- Using my creativity in all aspects of my life makes me feel happy and content.
- My grown up children accept me fully, and I feel safe being with them.
When I met Marit online in 2019 I was drawn to her kind attitude towards herself and her Parkinson’s, and to the ways she approached healing.
If I had met Marit at the beginning of her illness when I was a family doctor, I would not have recognized her risk factors, overt and covert, even if I had known to ask her about adverse childhood experiences (ACEs). I would not have understood the kinds of tools that could help and would have felt I could only offer medication and referrals to specialists.
Although the cause of Parkinson’s remains unknown today, the nervous system and trauma lens I have been exploring for the past 20 years identifies potential indicators of risk starting very early in Marit’s life. Her asthma and Parkinson’s story further highlight how the tools she’s used are helpful and suggest strategies for prevention and support for others. Here’s what I wish I’d known.
Prenatal stressors such as Marit’s mother experienced during her pregnancy (being sick, staying up nights / having a sick child, having a long and difficult labor, moving) are risk factors for Parkinson’s. From a trauma lens, adverse babyhood experiences (ABEs) can interfere with a mother’s natural ability to bond with her baby and can prime her baby’s nervous system to orient to the world with a heightened perception of threat. ABEs can therefore affect a baby’s developing nervous system, immune system, and more. From a trauma lens, asthma and difficulty breastfeeding are also common effects (and therefore potential indicators) of exposure to adversity.
Experiencing emotional neglect is an adverse childhood experience (ACE). Being hospitalized and other serious events Marit experienced in childhood are ACEs+. Adverse events in childhood are also suspected risk factors for Parkinson’s.
Not feeling seen, heard or acknowledged; feeling helpless or like we don’t fit in; “giving up;” blaming ourselves and thinking we are the cause of our parents’ distress; feeling shame, and feeling alone are symptoms of adverse childhood relationship experiences (ACREs). ACREs stem from relationships with our parents / caregivers and their own often unrecognized trauma. ACREs are among the most invisible risk factors for chronic illness.
Stressful events in adulthood, such as difficulty in marriage, divorce, injuries and more are Adverse Adulthood Experiences (AAEs) that can add further to risk and sometimes trigger onset (Adverse Pre-Onset Triggers or “APOEs”). Situations in our present life that bring up similar feelings we had in childhood are known as “triggers” and are a well-known response to unresolved trauma from the past.
Like Marit, individuals with Parkinson’s disease (PD) have often experienced an injury to the limb where the tremor first begins. This is another potential link between PD and a history of trauma and adversity.
30 years elapsed between the time Marit twisted her ankle and the onset of her Parkinson’s. This lengthy delay is one of the reasons trauma was dismissed as a risk factor for PD in the late 1800s and early 1900s. The trauma lens explains that the duration of this “latency period” is influenced by the balance or imbalance between the number and intensity of stressors, and the presence of support, which buffers the effects of trauma.
The trauma lens can help make sense of Marit’s experiences of asthma and her Parkinson’s story. It’s a view suggesting that the symptoms of PD may reflect a body and nervous system caught in a survival response, perhaps in the threat response of last resort known as freeze.
The changes in how Marit now feels – the presence of kind, connecting loved ones; her ability to be herself and experience unconditional love; self compassion; trust; patience; decreases in her symptoms of asthma and Parkinson’s; the sense of empowerment; and tools for working with her health – reflect the healing work Marit has done, including in healing old traumas.
Marit’s Chrillog offers insights and hope for others on their journeys with Parkinson’s, asthma and other chronic illnesses.
Marit and I laughed during a recent conversation on Messenger when we were talking about mindfulness and then got to joking. She told me that she has often thought of her Parkinson’s disease being “like a cow;”
Mindfulness comes easy with parkinson’s
Everything is slow – haha
In a way we are living examples of mindfulness
I thought my parkinson’s and me are like a cow
Lying, eating in all stomachs – Patient
Look at the eyes (in the cow picture below)- they are me a few years ago. Keeping to myself.
But a cow does what she needs to do, chews grass
And doesn’t care about what others want her to do
It’s an interesting analogy
And fun too
I think humor is ice breaking
Here are examples of the trauma science for making sense of asthma, type 2 diabetes (which is now linked to Parkinson’s and may carry similar risk factors), and “freeze;” the role of adversity in chronic illness. Marit’s tools and approaches for working with her health may be helpful to you. Here, too, are books, therapies for making sense of trauma and how to work with its effects. My post on 11 tools offers ways for thinking about tools for healing that are a good fit for you. I’ll be writing a blog post summarizing the research on the role of adversity as a risk factor for Parkinson’s in April for Parkinson’s awareness month and will link to it here when I publish it. If you’d like to share your story, you can learn more in my introduction to Chrillogs or contact me.