I vividly remember the date – March 12, 2018 – 13 days short of my 55th birthday. I had a neurologist appointment to address a somewhat unusual symptom that had been niggling me for 3 to 4 years then. At the time, I was a regular (long) distance runner, doing about 20k a week (on average 4 or 5 runs a week of 5k each). I had been running for about 10 years up until that time. However, after running 500m, my left foot would drop and I wasn’t able to continue running – so, I would continue walking for 100-200 m and would then again be able to run for a bit before the left foot would drop again. My average run dropped to 2 to 3km per day from 5km that I used to be able to run. I also had restlessness syndrome, whereby, the quadriceps muscles in my left leg would be nagging me all the time, sometimes painfully so.
I met Dr. V Nataraj, a seasoned and renowned neurologist at Billroth Hospital in Chennai. He examined me and said that I was likely having a deficit of Dopamine and this was a likely cause of my symptoms. I asked him if this would be Parkinson’s and he smiled and said – why do you bother about calling it Parkinson’s, just think of it as Dopamine deficiency!
No biomarkers for PD, conclusion based only upon clinical exam
A biomarker is defined as a biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. While for most other diseases, there is a biomarker, until very recently, PD did not have a biomarker. So, confirmation (of PD) comes indirectly – you are put on dopamine medication and if it shows effectiveness in addressing the symptom, your diagnosis is correct! And, that’s exactly how my diagnosis was also confirmed.
Only very recently, the medical community has hit upon a biomarker based on analysis of Cerebral Spinal Fluid (CSF). The test, called the α-synuclein seeding amplification assay (αSyn-SAA), can detect pathology in spinal fluid not only of people diagnosed with Parkinson’s, but also in individuals who have not yet been diagnosed or shown clinical symptoms of the disease, but are at a high risk of developing it. In clinical tests, this assay has demonstrated 93% accuracy. Lab protocols for the actual test have yet to be established.
No cure for PD
Parkinson’s is a neuro degenerative disease, for which no cure has been discovered until now. It’s worth noting that it is now 207+ years since James Parkinson first described this condition as “Shaking Palsy” because of the predominant tremor syndromes that PD patients seemed to demonstrate. The only two major advances in the treatment of PD are
- Syndopa (Sinemet in the US), a medication used to treat symptoms of Parkinson’s disease, was first approved by the U.S. Food and Drug Administration (FDA) in 1975. Syndopa is synthetic dopamine and addresses the symptoms of PD – it is not a cure.
- Deep Brain Stimulation (DBS) surgery was approved by the FDA (Food and Drug Administration) for treating essential tremor and Parkinson’s disease in 1997
Motor and Non-Motor Symptoms
The other problem with PD is also that there are non-standard symptoms – these include both Motor and Non-Motor symptoms:
Motor Symptoms:
- Tremors
- Brady Kinesia (Slowness of movement)
- Dystonia (Freezing)
- Dyskinesia
- Impaired balance
Non-Motor Symptoms:
- Reduced arm swing and / or foot dragging when walking
- Restless legs
- Constipation
- Sleeplessness
- Difficulty in swallowing
- Speech impairment
- Small handwriting (Micrographia)
- Memory problems
- Anxiety and depression
- Loss of smell
- Drooling
Each patient presents with a different combination of symptoms from the above menu! This makes it additionally difficult for the neurologists while treating PD patients.
The typical disease progression path:
- Pre-PD or Prodromal PD:
- Loss of sense of smell
- REM Behavior Disorder
- Constipation
- Early PD:
- Tremor
- Brady Kinesia
- Rigidity
- Fatigue
First Few Months – getting to accept my diagnosis
The first few months after diagnosis were traumatic – the question of “why me” was a constant one I had to deal with. I had been leading a disciplined life with regular exercises, healthy diet etc. and the question kept coming back to me as to how I could be afflicted with PD, a disease for which there was no cure!
PD impacts my professional work
At the time of diagnosis I was working for Freshworks, the first Indian IT product company to list on NASDAQ in 2021, heading their finance function in Chennai and reporting into the CFO, based out of the valley. The restless leg syndrome was a big distraction for me, especially in meetings and was beginning to affect my quality of work. However, I was unhappy with myself that my work output was not the best that it could be. After deliberating for a few months, I spoke to my CFO and CEO in early 2019 about my diagnosis and my decision to quit employment. They were very understanding and were gracious to offer a consulting opportunity for the next few months.
When having the PD diagnosis confirmed was a relief!
In December of 2018, one of my relatives (a Urologist in the US) suggested to me that I take a second opinion to rule out ALS. I met with Dr. Arul Selvam of Apollo Hospitals, who re-confirmed that Parkinson’s diagnosis and also ruled out ALS. For once, I was very relieved that my diagnosis of PD was correct, for the quality of life for ALS patients is much more challenging.
First three years – Early stages:
The first three years after diagnosis were still mild with a low dosage of medication and mild symptoms, primarily tremors in my left leg. I wasn’t even on dopamine (Syndopa), which is the gold standard for treating PD symptoms. By late 2021, the disease had progressed to the extent that I had to be put on Syndopa.
Later stages:
Increasing severity of symptoms, primarily tremors in the legs; Quality of Life (QoL) increasingly compromised; Late 2023 and 2024: Discussions with my MDS re DBS surgery to help improve my QoL.
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