When my father was diagnosed with Parkinson’s…

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PART I

My father’s story

 

July 28th 2014, the day that left me traumatised by the separation of my beloved father. I still wonder was it really because of his prolonged ill health condition or that fate wrote only 70 years in the calendar of his life? 10 years ago he noticed a slight involuntary tremor in his left arm. This gradually progressed to his legs and finally he was diagnosed with Parkinson’s at the age of 61. Despite retirement he still chose to work ignoring the signs of tremors, which then had become quite frequent and a part of him. Parkinson’s made his simple everyday tasks like putting on his clothes, doing the buttons up, putting the shoes, tying the lace, bathing, eating etc. incredibly difficult. His list of difficult to do tasks kept increasing. Being an accountant by profession signing cheques, answering telephonic calls, writing emails were part of his job, and as days progressed he found these jobs extremely cumbersome. He was asked to resign due to this inefficacy. Sitting at home made it all the more worse, disrupting his mental peace. Nonetheless he did find something interesting to occupy himself. Learning window operations on computer, reading a book did keep him engaged, but this damn illness progressed further making him difficult to remember and recollect things that he did. The only way for him to remember things was to write them on a notebook, oh god!!! Writing again was tough, but he still managed to scribble something which he could decode. As days passed by he became silent and seldom talked, talking itself was difficult. Whenever he talked it was as though he whispered. Suffering it all alone without appropriate support, the only support and caretaker at home was my mum. I cannot blame Parkinson’s for his death, but had I helped him manage this condition, he could have lived a better life than the one he lived. What is this Parkinson? Why my father or why anybody else? How to manage? Is this a permanent illness?

Without going deep into the science of this disease, let me tell you that Parkinson’s is because of gradual breakdown of neurons in the brain. Neurons produce a chemical called dopamine for normal brain functioning, this now depletes due to the gradual loss of neurons. The decreased level of dopamine causes abnormal brain activity manifesting into the signs of Parkinson’s. No specific reason or cause is attached to this neurodegenerative disorder, however, some attribute it to certain genetic elements and environmental factors. Age, exposure to harmful chemicals and gender are also contributing factors. Men at 60 yrs. of age or above tend to develop this disease.

Please read through Part II of this article, hope it serves as a piece of fundamental guideline to help your loved ones to manage with Parkinson’s.

 

PART II

How you can support your loved ones to manage with Parkinson

 

Based on the experience of my father’s condition I shall lay down certain pointers and hope it serves the purpose. Regular medical consultation is an absolute must and so also is seeking support from a Parkinson’s support community.

Few steps that you could probably take:

Keenly observe the signs and symptoms

Parkinson’s affects everyone differently. The signs of Parkinson’s described in my father’s story may not necessarily repeat in your loved ones. So be a keen observer. Usually it starts with slight involuntary tremors, sudden or gradual drop in weight, drop in Blood pressure, Tiredness, pain either in joints or throughout the body, various bladder concerns including constipation, accumulation and drooling of saliva and thereby difficulty in swallowing food or drinking water, Emotional changes like depression, sometimes hallucinations and difficulty in memorising and reduction in the capability to think. My father experienced difficulty to maintain a proper posture and developed a hunchback. He hardly sat rather he always maintained a slanting posture. Make note of these symptoms with respect to their time of occurrence in a day. For example: Do they experience tremors in the morning, or does it reduce later? Do they have the drooling saliva problem in the morning or does it vanish off as the day progresses, the consequence of taking a medicine and so on.

Regular Doctor Visits

Once your loved one is diagnosed with Parkinson’s make it a routine to fix an appointment with the doctor either bi-monthly or as per the doctor’s advice. Discuss your observations about the symptoms as mentioned in the above paragraph and the medications the patient is put on.  Speak about any side –effects or positive changes that you notice to be of considerable importance. Do accompany your loved one on a visit and also have a friend or relative accompany you to the doctor. Briefly discuss the signs and symptoms, understand how the diseases is progressing and the precautionary or supportive measures you as a caretaker could take. Ask for any reference material on the disease to understand it better. Discuss with your doctor about the best possible treatment plan with minimal side effects. Enquire about the dietary requirements and enquire the need for any dietary supplements. Remember a doctor can give pills to manage the symptoms of Parkinson’s but his pills can’t make it go away.

Switching to an alternative method of treatment

The greatest blunder in my father’s case was the frequent switching overs of alternative treatments, from Allopathy to Homeopathy to Ayurveda and also continuing either of the two simultaneously. Each branch has its own merits and no one branch of medicine is superior to the other. Depending on a certain belief and trust you can choose one mode of treatment and stick to it throughout. From my father’s experience being an observant, I opine that switching overs could only complicate things later.

Lifestyle support at home

Try working out a balanced healthy diet for your loved ones suffering from Parkinson’s. Including fibre rich food will ease their bowel movements that are troublesome in this disease. Try including green vegetables, fruits and adequate fluids to their diet. Increase the amount of omega-3 fatty acids to their diet through the inclusion of relevant nuts and vegetables such as cabbage, and discuss with the doctor on the appropriate diet plan. Try charting out an exercise plan for them in consultation with the doctor. Physiotherapy can also help to maintain a balanced posture. My father did undergo a physiotherapy session for a brief time so it could help some. Keep a reminder dairy for them, help them take their medication on time. Help your loved ones with simple daily activities like putting on their clothes, bathing, combing hair, or seek the help of an occupational therapist.

Communicate

Make effective communications with them. Discuss their feelings and ask how you could help. I did not spend time with my father and hardly spoke to him, I still repent of this today. People with Parkinson’s tend to forget things quickly so if they deny to admit certain facts, remember it’s not a deliberate act but due to inefficiency in remembering. So accept this fact and don’t argue. Converse regularly and keep them happy.

As days pass by this disease will only worse, yes there are medications and effective treatments but they only help to manage the symptoms of this disease. Support and care is the utmost priority. Seek for support groups in your locality to get more information on Parkinson’s and help your loved ones live happily through this neurodegenerative disease.

Always reach out for support and information.

About the author:

Radhika Narayan is a freelance Health IT business analyst by profession.