Thangam Krishnan 87 years old from Bangalore, has been a home maker who was very involved in the lives of her family comprising her 3 kids and her husband. Until her mid 70s she had led a very independent life, passionate about cooking savouries and sweets and was very socially connected. She narrates her story of being diagnosed with Parkinson’s and how she remained strong with great support from her family while continuing to be involved in the lives of her children, grandkids, daughters-in-law and son-in-law. While Parkinson’s has managed to impact her mobility, her indomitable spirit has helped her continue to be an integral part of the lives of her family.
Please tell us about your condition and when you were diagnosed.
I was diagnosed with Parkinson's disease in 2009 by a doctor in Bangalore. Prior to coming to Bangalore, I experienced some tremors in my right hand, and I had had a couple of minor falls in Mumbai. When I informed my daughter, she asked me to show it to a doctor in Bangalore. The doctor an orthopaedic surgeon told me that the issue was related to Parkinson’s and asked me to visit with Dr Muthane, a renowned Parkinson’s specialist in Bangalore.
How did it all start? Your early symptoms? Which of these symptoms were more bothersome?
As mentioned above, I became concerned when I felt tremors in my hand. Also, when I walked, occasionally I felt a lack of control over where my legs were moving. I also felt my handwriting was becoming smaller and it was difficult to write a sentence in a straight line. When I tried to write quickly, the alphabets would overlap. I would say that the inability to walk confidently was most bothersome.
When were you told about the diagnosis? What was your reaction to the diagnosis?
I saw the neuro specialist on May 5, 2009, the same day that my first doctor asked me to consult with him. The previous doctor’s recommendation was based on watching me walk in his clinic. After examining me for about 10 minutes, the neurologist, who is a movement disorders specialist, told me that I had Parkinson’s. I believed that there was nothing wrong with me and as I was ignorant of this illness, I did not give it too much importance. Also, when I saw his other patients who seemed to have advanced symptoms (including inability to walk, hands or legs moving without control) I did not see myself as having that as a problem.
Is there any history of Parkinson’s disease in the family?
No. Not that I am aware of. My father had a paralytic stroke at the age of 57, from which he recovered and lived till he was 75. My mother did not have Parkinson’s either. Not aware of any other family member who had Parkinson’s.
What was the initial treatment? And how has the treatment changed over time?
I have been taking the same medication since 2009. Only the dosage and frequency have increased. About a decade ago, I was experiencing difficulty sleeping. Clonazepam 0.25mg was added to the medicines I take. From time to time, the medicine was adjusted a little when I experienced greater dyskinesia. In 2011, on one occasion, a doctor in Mumbai had changed one medicine (as I was living in both Bangalore and Mumbai, we had decided to have a doctor in Mumbai as well). One of the side effects of this medicine was a potential to hallucinate and I had one episode of hallucinations when I had returned to Bangalore. I had woken up at 2:30 am to have a shower and I felt that there were rats in the house and my house was being burgled. Both my son and daughter along with daughter-in-law in Bangalore took me back to Dr Muthane and it took a couple of days for the effect of the medicine to wear off. The doctor in Bengaluru immediately discontinued the use of the new medicine and for a few weeks reduced the dosage of all the dopamine inducing medicines until he was confident that the rush of overdose was minimised. Since that incident in 2012 or thereabouts, there have been no other episodes of overdose or negative reaction to any medicine and dosage has not been increased for the fear of moving into a hallucinatory state. Specifically, as it relates to the medicine that made me go into a hallucinatory state, that was mentioned as a possible side effect in some patients. Once we stopped it, the issue did not resurface.
Were there any complications from the primary condition and at what stage? And how did you handle these?
Over a period of time, I suffer occasionally from constipation, which I am told is a problem that Parkinson’s patients suffer from. It has not been very acute, and I have green bananas and black raisins when it gets a little uncomfortable.
How did the condition affect you physically as well as mentally?
Physically, not much. The involuntary movement in my legs and body is something I have got used to and I have gradually accepted it. Mentally, I lost confidence in being able to walk and I was always worried about being consigned to a wheelchair or becoming bedridden.
In the initial years after I was diagnosed with Parkinson’s, I managed my chores and time independently, with little to no supervision. I was able to walk relatively confidently and required little support from the family. However, as the disease advanced, I had to deal with more hours sitting or not walking and that began to frustrate me.
There were a few things that my family did to keep my morale up and give me confidence to deal with the affliction, like buying me chocolates, biscuits and ice creams as I did not have any other medical condition or co-morbidities.
Did you have any co-morbidities and if so how did it affect your treatment?
No co-morbidities
What medications are you currently on? Please mention all allopathic, supplemental medicines and indications of each.
Levodopa and Carbodopa 110 (6 times a day 1.5 tablets each time)
Entacapone 200 (1/2 tablet 6 times a day)
Amino acid and nutritional supplements (1 time a day)
Multivitamin B-complex, Vitamin C and Calcium (1 tablet a day)
Folic acid (1 tablet a day)
Clonazepam (2 tablets in the night each of 0.25mg)
Amantidine (1/4 tablet three times a day)
Calcium Vitamin D and Folic acid (1 tablet after lunch)
MultiVitamin (every alternate day)
Have you tried complementary medicine or therapies? If yes, did it help?
No.
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
Only consulted with a physiotherapist and Parkinson’s specialist. Physiotherapy 2 times a week and a Parkinsons specialist 2 to 3 times a year.
Rehabilitation is very important for Parkinson’s Disease. How do you handle this? What challenges did you face in finding the right option for you?
There has been no specific rehabilitation other than having full time caretakers and physiotherapy sessions.
What changes have you made to your lifestyle because of this condition?
Initially when the condition was mild, I would have somebody in the kitchen with me in case I wished to cook. My family (children, grandchildren and daughters in law) has been very supportive.
Changes have been forced on me due to the nature of the illness. I try to walk only when I am “on” after taking the medicines. I have learned to recognize when the medicines are no longer effective and then I largely do not move or walk. Generally, the condition gets worse as the day progresses. I have started reading a lot to take my mind of any physical activity that I would otherwise be doing.
The big change for me was to move from saris to wearing salwar. Also, at night wearing a diaper in case I need to use the restroom urgently.
I would visit the Parkinson's specialist from time to time who would evaluate me, suggest ways to keep my mind active and reassure me that the progress of the disease has been slow.
How do/did you navigate activities of daily living? What kind of nursing/ attendant support do you have? Any challenges you faced with nursing help?
I was initially slow but mobile and didn't appear to lose my balance. When the doctor, felt that I would be better with people monitoring my movements, my family and I made a decision to hire a 24/7 caretaker.
Since 2017-2018, I have used the services of a 24/7 caretaker. The caretakers take me down for a walk every day. I bump into some neighbor or person from the community who will chat with me and many of them praise me for my resilience.
Any change in the caretaker is the time when I get a little anxious. Fortunately, I am able to develop a good rapport with them. My son makes sure to stay close to the situation until I express confidence. On the rare occasion when there is a difference of opinion, my son ensures that I am heard and encourages the caretaker to defer to my requests. The biggest concern when I have a new caretaker is to make sure that they do not miss out on administering medicines as that could have a significant impact on my mobility.
Because of low dopamine, people with Parkinson’s often experience depressive symptoms. How do you handle that? Did you see a counselor for support?
No I haven’t experienced any notable symptoms of depression. I have strong family support and I am a positive human being. I pray a lot and seek courage to go through this affliction.
How has your family supported you?
Extensively. I have not lived a single day by myself and my kids their spouses and grandkids have not made me feel like I am unwell and this has only given me reasons to live.
When I began to tire of watching TV as I had no other hobby, my grandson got me to start reading. This was about 8 years back. Initially he gave me a set of Harry Potter books to read and every evening, he would ask me how much I had read and would quiz me on what I had read. Not wanting to look underprepared in front of my grandson, I initially began to read these books like I was taking an exam and over a period of time, reading became a part of my life. Over the last 8 years, I have read over 100 books and I spend at least 4 to 6 hours a day reading. Every book is given to me by either my son or grandson and I feel a sense of accomplishment when I finish the book. Godfather was one of my favourite books and my grandson also made me watch the movie with him. I have read the book three times. Even when I go to Mumbai, the same ritual is followed.
Every morning and a few times during the day my grandson will spend some time with me asking me how I was doing and if I express any negative sentiments, he will reassure me that I am fine.
One of my biggest passions was cooking. My inability to cook was very frustrating so occasionally my son gets me into the kitchen, and my son prepares the dishes, with me supervising his efforts. When my son is done making the sweets or savouries, we make sure to give it to neighbours. We let them know that it was made under my supervision and I enjoy the attention. At my daughter’s place, she allows me to instruct her cook to make anything that I want.
Every friend of my son who visits our house will come to my room and chat with me for some time. It makes me feel wanted and part of the household.
We celebrate the birthdays of every person at home including the caretaker’s, just as my daughter-in-law makes it a point to celebrate every religious event. My family takes my counsel on what needs to be prepared on these days and if there is something important, they ask me to look for an auspicious day and time.
My son takes me twice a week on my wheelchair to the supermarket in the building basement where I spend about 30 minutes buying vegetables, fruits and biscuits which feels like an outing for me.
My other grandkids talk to me from time to time and I enjoy that attention. My granddaughter who comes to Bangalore every month spends time with me, buys me junk food that I enjoy and pampers me every time she visits.
What were some of the challenges your family faced and how did they cope?
They have not made me feel that there are any challenges.
What do you think you learnt in managing your condition that you wished you knew before?
Nothing comes to mind. This is a progressive illness, and I am happy that I have not got ahead of myself. I take one day at a time.
What is your advice to patients who face similar challenges?
Pick up hobbies that do not require you to move around too much, pray to God and accept all help that is offered.
What are you worried about for the future?
That I will get bedridden.
I hope that a cure is found for this disease in the years to come so that people can have a better quality of life.
