Thoughts of a Parkinson’s sufferer, I. Carola G.
Intro
What does someone do who has an illness that is invisible to others? Someone who compensates well and shows few symptoms. Others are puzzled. Everything from disbelief to pity occurs. Doesn’t the person then suffer? Nobody thinks that life is characterised by pills and unspecific symptoms.
When I was diagnosed with Parkinson’s, I thought that I would be limited relatively soon. The first thing I often found on the Internet was information about the need for care. Quality of life despite Parkinson’s was not the top priority on the Internet.
Facts
Parkinson’s is not the same as nursing care, old and disabled and unable to work. It is not the “old man’s disease”. I was 53 years old when the gait disorder started. Others get the disease even earlier. It is unclear whether an unexplained unusual fatigue and tiredness that occurred years earlier was already an expression of the disease.
There is only a degree of disability of 30 (severe disability) for the diagnosis. In the first few years and even later, life can still take a more normal course and not everything has to revolve around the illness.
Parkinson Honeymoon
I like the term honeymoon. It makes me think of being newly in love, a positive feeling like a honeymoon. I’ve hardly found anything on Parkinson’s and honeymoon, only after the honeymoon. Is a symptom-free “Parki” exotic? According to the neurologist at the clinic, the aim is to be symptom-free or reduce symptoms through the medication, which works for some people at the start of treatment, hence the “honeymoon phase”.
I enjoy the symptom-free period and make the most of it. I run half marathons, hike up the Zugspitze and walk 2/3 of the Spanish Way of St James. I’m also changing my job. All despite the corona pandemic. I’m taking off again.
“Mr Parki” goes with
Every day, “Mr Parki”, as I affectionately call him, goes with me after the discoverer of the disease, an English family doctor in the 19th century. He accompanies me throughout the day. I can only rarely leave him at home.
The future is uncertain. The first thing I thought about was that I had fortunately taken out supplementary care insurance.
“Mr Parki” is forgotten
Sometimes I also forget that I have Parkinson’s. The medication keeps reminding me. If I don’t take them, I notice a deterioration in my motor skills again. And the symptoms return.
The beginning
When I knew something was wrong, I realised it was something neurological because I felt like I was slowing down when I walked, I couldn’t control my fast walking. After my parents became worried and a neighbour spoke to me about it, I went to see a neurologist. My left side became more and more rigid and I developed a gait disorder. After
4 weeks in hospital, I had to adjust to the diagnosis with a lot of L-Dopa. I was functioning normally again after almost half a year of “hobbling” around with more and more tension and effort and loss of arm swing.
Diagnostic shock
The lack of clarity during the diagnosis with the “unusual” gait disorder, which got worse and worse, led to the first hospitalisation in my life. I shed many tears before and after the diagnosis. In the evenings, alone in the long empty corridors of the clinic, I could cry and cry undisturbed.
I also cried to the psychologist in the clinic. At first, I didn’t want to accept the diagnosis and the fact that the L-Dopa test didn’t work suited me. Because I thought I didn’t have Parkinson’s after all. On the other hand, I thought, the cup can’t always pass you by. I was always fine. I was glad that there was a medication that allowed me to walk normally again.
Drug addiction
To be dependent on medication from one day to the next, to only be able to function with it, to realise when it wasn’t there, was something I would never have dreamed of at my age. Before that, I didn’t take regular medication forever. But the pressure of suffering meant that compliance was high, which also improved my quality of life.
Reaction of the others
At first, I was given unsolicited advice that I didn’t need or already knew. At the beginning there was pity, excessive consideration, but also disinterest (“you can’t tell by looking at me”). When I later came out with the diagnosis, there were often looks of disbelief, but also interest and disinterest. During the period of “limping”, I also developed strategies
that it wasn’t obvious or learnt to hide it as much as possible. Frequent enquiries about how I was feeling, people who wanted to get in touch but didn’t, etc.
I don’t want to be in the foreground, but I want people who are close to me to know about it and I can come out where it’s important to me without appearing pitiful. Mr P. is a part of me forever.
Patient role
It’s amazing how quickly I slipped into the patient role in the clinic. I think the clinic regression and patient status are important. You can’t cope well without it. I was lucky to feel well looked after and cared for on the small neurological ward before the pandemic.
Parkinson’s complex treatment
I was integrated into the Parkinson’s complex treatment with physiotherapy, occupational therapy, speech therapy and exercise.
As the exercise was too simple and the speech therapy was not yet necessary, I was allowed to take part in Feldenkrais on another ward and Thai Chi. I also enjoyed the mud packs and Medijet massages.
L-Dopa
I could see how quickly the symptoms diminished and disappeared when I increased the dose to 500 mg. I was myself again and on a honeymoon.
Switch to an agonist
I was reluctant to switch to an agonist. The L-dopa worked too well and was like a saviour, giving me a new attitude to life. Because L-dopa doses of 400 mg or more per day can lead to excessive movements and fluctuations in effect, I decided to switch on the advice of my neurologist. It took me a long time to make the
decision and a long time for the outpatient reduction and increase in dosage. I cursed and cried, sometimes felt like I was at the end of my tether and had unpleasant muscle cramps in my back. But it was worth it. I reduced L-Dopa to 100mg daily until the onset of increased daytime sleepiness attacks.
Side effects
At some point, the dose no longer worked and the gait disturbance returned. Increasing the l-dopa to 150 mg daily helped, but the longer intake of ropinirole led to increased attacks of falling asleep during the day, so I reduced the dose by 4 mg and took up to 250 mg of l-dopa daily. Then came the increased liver value fluctuations.
Is it unclear whether this is due to the medication?
What is Parkinson’s disease?
Parkinson’s is a syndrome with different symptoms and causes, most of which are still unclear. What they have in common is the movement disorder, which manifests itself either in rigour (stiffness of the muscles), tremor and/or slowed movements. Parkinson’s is individual with many unspecific symptoms. In my experience, people don’t believe me. For example, sweating is not supposed to be a symptom, although it was one of the early symptoms in one affected person. Severe exhaustion (fatigue) should also only be a symptom of Parkinson’s in the later advanced stages, although it appears as a symptom on reputable websites for those affected.
affected persons as a symptom at any stage of the disease.
Illegible font
I could read my handwriting less and less. Writing exercises in occupational therapy helped and still help to make it more legible again.
Little empathy
A colleague talked about personality changes in Parkinson’s without realising that I had Parkinson’s, even though she knew. A medical student who was working on the study at the university hospital talked to me on the phone as if I had a cognitive disorder. I preferred to say that I had a motor disorder and not dementia.
Compensation
People who have moved a lot are better able to compensate for neurological deficits. This also applies to Parkinson’s disease.
Fasting
Fasting according to Buchinger is said to have a positive effect on the disease. Remember that detoxification is good for you. Do it in combination with hiking and with guidance and being somewhere else. Hike through the Harz Mountains, sleep in a monastery in the Bavarian Forest, fast and hike in the Allgäu with mountain views.
Movement
Exercise, especially certain sports such as table tennis, running, tango dancing, boxing etc. should help to slow down the progression of the disease. I realise that running is good for me.
Singing
Singing is good. A weakness on the left side of my cheek became apparent over time, which I am trying to get under control with speech therapy. Preventively influencing speech and voice and having fun with it is positive, also for the mood, especially with others.
Working
I hope to be able to work for quite a while yet. It’s important to have a job
to have a job.
End of Honeymoon phase?
When does the honeymoon end? I have also met many people who, despite their illness, make the best of it and are optimistic and full of life. The gait disorder returned in the meantime, daytime tiredness and attacks of falling asleep and a strong inner exhaustion and thus slumps again… But is that the end of the honeymoon?
Understanding others
I find it difficult to explain to people who are not affected how Parkinson’s makes me feel. The symptoms, the sensations are so different from what I was used to. Tension and stiffness are not the same. It is difficult to compare the stiffness of osteoarthritis with Parkinson’s disease. It’s like comparing apples and oranges. Exhaustion and tiredness also feel different. Many things are unspecific and intangible for me. Sometimes I don’t know what is Parkinson’s and what is not.
Doctors
I keep realising that it is still not standard practice for doctors to look beyond their own specialism. Many doctors also still find it difficult to be empathetic and sensitive and do not come to terms with patients’ feelings, for example when they cry, and prefer not to deal with them. But not every cry and struggle is depression and is often appropriate in the situation. Neurologists in particular, who deal with illnesses that tend to get worse rather than better, need a sure instinct for this.
It is important to take the patient seriously. Only they themselves know what it feels like to have Parkinson’s. It is also important that doctors admit that they don’t know what the disease is or that it belongs to a different speciality. Not like the orthopaedic surgeon who only told me when I asked him that my gait disorder was not orthopaedic. By then I had already realised that it was neurological. What would have happened if I hadn’t been convinced myself…?
Doctors who are honest and admit their limitations, ignorance and mistakes increase my respect for them and their expertise. I was lucky not to have had a long path of diagnosis. But empathy and listening are not particularly paid for, but would be very cost-saving for the health insurance companies. However, there are also doctors who take their patients seriously and advise them at eye level and take their time. It’s worth looking for them.
Goals and conclusion
I have goals. Goals are important in a situation like this, also because so much can still happen, but the art is also to adjust your goals. I’m lucky that a lot is still possible in the honeymoon phase.
Up to now, 4 years after the onset of the gait disorder, I am actually still doing very well despite the slumps, I can do everything. Balance and coordination work with the medication. The “honeymoon” lets me do and try many things.
What happens next? There is still no treatment that can stop the disease … But we are on the way!
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