My father was diagnosed with Parkinsons disease in 2014. I wrote a post about Parkinsons disease which is available in my ebook. Parkinsons is a neurological condition that affects the brain and slowly robs the person of their abilities to do a variety of everyday tasks which is chiefly characterized by tremors(buttoning their shirt, dressing themselves, taking bath, eating on their own – all become difficult after a while) In India, unfortunately awareness about Parkinsons and Alzhemiers disease is poor. Having lived in the US I knew a lot about Parkinsons disease and Alzhemier’s disease. Research is continuously ongoing in these areas to alleviate the difficulties of those who are suffering.
2014 – 2016
My father was in denial for a long time and he was on the lowest dose of Syndopa (the most popular medicine to treat Parkinsons) for almost 2 years. He still hadn’t visited a neurologist and maintained his almost normal routines.
Through the 2 years, his walk changed and I was quick to notice it even though we visited him in Chennai only occasionally. His type of walk was known as “shuffling”. His balance was also getting more harder. He slowly reduced his outside walks because he knew something was definitely bothering him. He very rarely complained about his physical difficulties and the only thing that he told me once was that his limbs were feeling “stiff”( a totally Parkinsons condition)
We never really understood what was hard for him and what was easy for him as the days progressed. We just had to take a guess( he won’t tell – are all men that way?) As an example, if he was not interested in looking at the books that he used to love to read, we have to understand that he found reading difficult. If he was not reading the newspaper, we had to understand that he was not able to read the newspaper. If he did not go for walks outside, we had to understand that he found walking difficult. They say women are hard to understand, but we three women could never decipher my father !
He finally did visit the neurologist around 2016 and his medicines were properly adjusted. He seemed to be walking much better for some time. In the meantime, he also did his own research about the disease and cut out newspaper articles and understood that in addition to medicines, it was exercise and physical therapy that will help him.
Thankfully, he never had bad and visible tremors (his type of Parkinsons was known as ‘Vascular Parkinsons’ is what I learnt later, which affects the lower body more than the upper body) In spite of all the medications and physical therapy exercises, he soon had numerous falls in 2019. He was lucky that in each of his falls, he did not suffer a fracture. After a long time, he understood that this was a monstrous, irreversible and progressive disease. He finally agreed to move closer to where we stayed so that we could all fight this monster together.
2019 and the move:
This was probably the best thing for all of us as we could care for him with all our might. He was at the happiest and simplest best for almost 9 months. His health picked up and he was decently independent inside the house with the help of a walker. Everyday, I used to visit him and he used to welcome me and we used to gorge on my mother’s yummy food(even though, both of us were trying to lose weight!! :))
In the mean time, he did have other age related issues like dementia. He did forget a lot of things but remembered his bank days from 20 – 30 years ago. The Parkinsons medications used to give him a lot of confusion too. But we just adjusted and helped him along instead of putting him on more medications.
By late July 2020, a small trigger caused a cascading effect of bad reactions on him. He started to sleep more and more and his brain started deteriorating rapidly . Since, COVID was running the show, we could not take him to the hospital as freely as before. We did numerous video appointments with the doctor and we were quite confident that he will get up soon.
He did talk freely when lying down though his speech was increasingly getting slurred.But he was vocal and could tell the tastes of different food items and used to crack jokes here and there. We still did think he would get better all along and the physical therapist did come regularly all through August.
Then, started the respiratory issues. We had no idea, where those respiratory issues came from(no, he was COVID negative – we had kept him safe to avoid any other health issue) His respiratory issues were bad when he was lying down(and it was diagnosed as sleep apnea) Our video appointments with the doctors continued. COVID was at its peak in September in India and in spite of having respiratory distress at that time, we were never asked to get him admitted at any point of time or even be seen in person at the doctors ( maybe because of COVID? – we never understood why)
By early and mid September, he started deteriorating even more. There are no words to explain what he underwent in mid September. His brain was suffering a lot and it pained us all to see him that way. He had involuntary movements of the eye, hands and head. We tried our level best to keep him happy and talked to him all the time. In spite of all the dementia, he never forgot the three of us and recognized us any time.
By late September, we knew COVID or no COVID, he had to be admitted to the hospital. He was taken into the ICU on 27th September after battery of heartless questions at the hospital.
Up next…’Where did humanity go’?
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