Friday, August 24, 2012
Living with Parkinson's Disease: 1. Initial Days
Living with Parkinson's Disease: 1. Initial Days: My father, who I will refer to as Appa, was first diagonised with Parkinson's Disease in 1991. He was just 42 years old at the time. His fa...
Monday, August 20, 2012
4. Now
After my wedding in 2010, the downward slope has been more slippery for Appa. I remember that he was able to walk by himself at least once at the wedding and we were also able to take him to the bathroom as and when the need arose. In the time since then, he relies on diapers and a urine pot, unable to understand when he needs to go and basically, unable to go even when he does know. Amma has had it tougher than anyone else obviously. She has been a 24x7, 365 days caregiver year over year, for the last 10 years.
Amma is simply unbelievable for the patience and the care that she gives him. She tells him this freely and it is very true - no one else can give him the kind of care that she has, over the years. Who can give up their night's sleep every single night? Appa can not turn in bed, cannot sit up, cannot lie down or move once he is in the bed. He calls out for her every single time that he wants to even move a little in the night. Earlier, he would have very precise requirements of how the bedsheet would have to be placed over him, how the lungi would have to be between his legs while in bed, how the pillow would have to be placed, etc. All this while putting him to sleep is one thing, but to be woken up in the middle of the night, every single night, can drive anyone up the wall. But not Amma. She continues to provide care to this day.
She is everything to him. It is debatable whether even his Mother would have taken this much care of him. She has an amazing appetite to listen to him patiently, bear his mood swings and still come back to him to check if he needs any help. Of course, at times, we believe that she needs to be a little different. But then, we are Indians - good at commentary but not at implementation. Nowadays, she pulls him out of bed, takes him to the bathroom, seats him on the pot, washes up after he is done, makes him brush his teeth and walks him out, holding his hands to support him. She ensures that she has a multitude of small bowls soaked with all kinds of things ranging from okra to fenugreek seeds to ridge gourd ready for him to eat. He somehow manages to eat that by himself while he spills water over the newspaper which he is no longer able to read or make sense out of. Following this, frequently, he is unable to understand if he really needs to go to the toilet. He asks to be taken there - so off she goes again to help him there. Once this visit is done which can easily take up to 20 minutes, she heads over to make coffee for him. The schedule is maddening! Then follows breakfast which is fed to him as he is unable to eat by himself any more. Then she moves him from the dining table over to the TV viewing area where he sits and falls asleep. Then she heads back to the kitchen and does miscellaneous activity which is culminated with her breakfast. Later, it is back to take him for a bath to the bathroom. She gives him a bath and dresses him again which can take at least 30 minutes up to 45 minutes. Once again, he is helped out into the living room and lunch fed to him. Within 30 minutes of lunch, he gets restless and asks to be put to sleep. So off she goes again - drags him to the bedroom to put him to sleep for not more than 30-45 minutes after which he calls out indicating that he needs to sit. When does she sleep?! Soon, it is time for evening tea and a plate full of biscuits out of which he eats one. Nowadays, the diaper helps reduce his visits to the bathroom. But an hour after tea, there has to be bread toast and juice to be prepared for him. If not juice, then fruits. An hour later, time for dinner to be fed followed by bed by 10:00 p.m. The night time story is something else altogether. He invariably wets himself at least once in the night. Sometimes, he doesn't even call out for help because he is ashamed of himself. I remember the night last year, when I was with him during the night. I woke up with a start at 5:30 a.m. to find him wide awake, naked waist down and in a completely delusional state. With me, it was easier because I don't listen to his protests as much as Amma does. But she has to go through this every single night! U.N.B.E.L.I.E.V.A.B.L.E.
Nowadays, Appa wades through the hours and days unaware of the date, month or year. When he does initiate conversation, it is about something quite random and is a reflection of the state of his mind. The other day, he was asking if we had got the signatures. He wanted me to write a letter and get the signature on the letter. I did ask him which letter and to whom - he couldn't talk about things in such detail at all. Over time, my wife and I have realized that we shouldn't ask him such questions. The best way forward is to play along and say that whatever he is asking for will be done the following day. But in between all the doom and gloom, there is sometimes a single ray of light. There are times when he is coherent in thought if not ever in speech. He is able to indicate when he has to go to the bathroom. He is still able to recognize people around him.
His speech has completely deserted him. There are rare occasions when we can actually pick up a word of what he is trying to say. At most times, it is a movement of his lips but no sound actually comes out. We feed him food - I have read about stories where towards the later stages of the disease, even swallowing the food becomes a problem and I wonder how much longer before that happens with Appa! We used to ask him to speak louder as that is what speech therapy for PD is all about - speak as loudly as you can. But nowadays, he probably can not speak louder at all! He doesn't sleep too well at night but sleeps for much of the day instead. In the night, he is haunted by dreams, hallucinations, convinced that there is someone out there. After spending a few hours sitting the living room, he needs to be reminded of the direction and the way back to his room as we lead him back there. His walk is simply non-existent - he relies on the person leading him to pull him along as he forgets that he is expected to walk. The lost look is evident in his eyes. His eyes - they are still aware and sensitive to our facial expressions but when he has to express something or talk about something, they have the look of a lost, confused person. I have seen that look in his mother's face when she says that she can not hear a word of what we are trying to say. It is the same look. He takes in so many pills, it is insane. He takes pills for PD, Diabetes, High Blood Pressure, Vitamin B-complex, etc. Of course, he is no longer aware of how many pills or which one is to be taken at what time.
His speech has completely deserted him. There are rare occasions when we can actually pick up a word of what he is trying to say. At most times, it is a movement of his lips but no sound actually comes out. We feed him food - I have read about stories where towards the later stages of the disease, even swallowing the food becomes a problem and I wonder how much longer before that happens with Appa! We used to ask him to speak louder as that is what speech therapy for PD is all about - speak as loudly as you can. But nowadays, he probably can not speak louder at all! He doesn't sleep too well at night but sleeps for much of the day instead. In the night, he is haunted by dreams, hallucinations, convinced that there is someone out there. After spending a few hours sitting the living room, he needs to be reminded of the direction and the way back to his room as we lead him back there. His walk is simply non-existent - he relies on the person leading him to pull him along as he forgets that he is expected to walk. The lost look is evident in his eyes. His eyes - they are still aware and sensitive to our facial expressions but when he has to express something or talk about something, they have the look of a lost, confused person. I have seen that look in his mother's face when she says that she can not hear a word of what we are trying to say. It is the same look. He takes in so many pills, it is insane. He takes pills for PD, Diabetes, High Blood Pressure, Vitamin B-complex, etc. Of course, he is no longer aware of how many pills or which one is to be taken at what time.
3. Days, month and years
One of the many complications post the surgery at Pune was a right wrist drop. Over time, Appa improved to a condition where he was able to once again control his sugar levels, move around on his own and make meaningful conversation. But the problem of his right wrist having completely dropped remained. We took him back to Pune for a last visit post the surgery. The quack coolly dismissed it as one of the unfortunate after effects of what was essentially a successful surgery. He was impressed that the two holes that were drilled in Appa's skull were not overtly visible because of his skill and technique. They shot a video of Appa climbing the stairs up and down by himself (he was on a high dosage of Syndopa at the time) and blamed us for the blood sugar fluctuations. We exhibited our traditional softness of character and quietly made our way back to Hyderabad.
Now followed a period between Appa and me where I was able to understand him like I had never before. I started taking him for physiotherapy sessions so we could rectify his wrist drop. We would go every morning at 11:00 a.m. for a 45 minutes session at Sweekar which was close to home. I had started visiting the gym regularly and knew a thing or two about the physiology of the body having to do many exercises myself at the time. I was a strict task master, cajoling, shouting, asserting myself at various times as we moved through his set of exercises every day. We had a splint for the wrist made for him and he gradually recovered to the point where he was able to go for a walk downstairs all by himself. The walk, of course, would have its own stops and starts, he would be rigid but he did recover to the point where he was able to perform many tasks on his own. His hallucinations reduced to only being prevalent during the night time. One of the last times that we walked together was when we went out on to the road and walked a little bit there. He did not enjoy it much - he was tense but I was glad that we were able to progress till that stage.
This period continued for 6 months while I was able to help him as much as I could. It was soon time for me to leave for my studies at the United States and I took off in December after my cousin had come over for his official stint at Hyderabad. As a result, I did not feel too bad about not being there since he could cover for some of the things that I was helping with. Maybe not as much with Appa as with Amma, perhaps.
Over the next few months, Appa started going to the office of one of his old colleagues from his office who had started a company of their own. A car would arrive in the morning to take him to work and back - he would be present there for not more than 2 hours. As usual, he was reticent about his work there and we suspected that there wasn't much that he was doing there. Over time, he would renege to falling asleep after bath and breakfast, at around 10:00 a.m. It was basically down to the largess of his old friends that they continued to deposit a "salary" into his account for his visits to their offices. To Appa's immense credit, he went to their office for a period of 4-5 years after the surgery. On some days, it would be surprising to us that he managed to still go and return but after a fall or two on his way to work in 2006/7, he stopped.
He stopped going to office and slowly, a fall or two while walking in the basement after dinner ensured that walks that were frequent also ground to a halt. As the days, months and years passed, he would have his ups and downs. He continued to have a distinctly ON period after breakfast every morning when he was able to go to the bathroom by himself.
Appa has always been short tempered and the disease is truly one of a kind. Of course, every disease seems like the worst to those suffering it but PD has got to be up there in that list. It exposes the patient in every aspect possible. It brings out your darkest side to be laid open for others to see. Appa belongs to a generation where the boy child was the apple of the eye for his family and the spouse was entrusted with the care and upkeep of the house and the kids while he would be the bread winner. He never confided his thoughts to anyone in the house - keeping his work pressures and tensions to himself and being very quiet most of the time. A a result, we never really understood the man behind the figure of a father. He never really learnt to express himself or his thoughts to anyone. But the disease doesn't care. The medications don't care. Some of his shortfalls such as a tendency to be lazy, a tendency to depend on others and expect others to respond to his weakness in a positive way, his extremely short temper have all been brought out in excruciating detail. Some of these traits are masked by us in our younger days as we learn to be more mature and take things in our stride. With PD, you are completely exposed. Everyone around can see you suffering and wonder what is wrong.
Over the years, all of us would insist on him exercising more frequently, tell him to not lose hope. He was a voracious reader - he would read books and had a genuine interest in Hollywood movies and cricket. He started to fall more frequently while trying to get up from the chair or while walking. His sense of balance started to desert him along with an onset of continence. Even till 2008/09, he was able to walk by himself at times when the need arose. He was never a social person and going out to visit some relatives sometimes proved to be an ordeal too big to overcome for him. His tremors would increase and his rigidity would take over. After experimenting with a walking stick to give him some balance for a few years starting 2005/6, we bought a wheelchair for him in 2009. If nothing else, it was to help take him out a little more frequently. It was simply not worth the trauma for him or for us as caregivers to have him undergo the scrutiny of a thousand eyes of people looking at him as he struggled to take a step.
Days move into months, months into years - they were numbers for him as he turned 60. An age when his classmates would retire saw him on a wheelchair struggling to make conversation. At times, we look wistfully at some 70+ year olds walking around, traveling on their own, being independent. If we, as his children, realize it once in a while, we can only imagine the thoughts that run through his head. What must be going through his mind?
Now followed a period between Appa and me where I was able to understand him like I had never before. I started taking him for physiotherapy sessions so we could rectify his wrist drop. We would go every morning at 11:00 a.m. for a 45 minutes session at Sweekar which was close to home. I had started visiting the gym regularly and knew a thing or two about the physiology of the body having to do many exercises myself at the time. I was a strict task master, cajoling, shouting, asserting myself at various times as we moved through his set of exercises every day. We had a splint for the wrist made for him and he gradually recovered to the point where he was able to go for a walk downstairs all by himself. The walk, of course, would have its own stops and starts, he would be rigid but he did recover to the point where he was able to perform many tasks on his own. His hallucinations reduced to only being prevalent during the night time. One of the last times that we walked together was when we went out on to the road and walked a little bit there. He did not enjoy it much - he was tense but I was glad that we were able to progress till that stage.
This period continued for 6 months while I was able to help him as much as I could. It was soon time for me to leave for my studies at the United States and I took off in December after my cousin had come over for his official stint at Hyderabad. As a result, I did not feel too bad about not being there since he could cover for some of the things that I was helping with. Maybe not as much with Appa as with Amma, perhaps.
Over the next few months, Appa started going to the office of one of his old colleagues from his office who had started a company of their own. A car would arrive in the morning to take him to work and back - he would be present there for not more than 2 hours. As usual, he was reticent about his work there and we suspected that there wasn't much that he was doing there. Over time, he would renege to falling asleep after bath and breakfast, at around 10:00 a.m. It was basically down to the largess of his old friends that they continued to deposit a "salary" into his account for his visits to their offices. To Appa's immense credit, he went to their office for a period of 4-5 years after the surgery. On some days, it would be surprising to us that he managed to still go and return but after a fall or two on his way to work in 2006/7, he stopped.
He stopped going to office and slowly, a fall or two while walking in the basement after dinner ensured that walks that were frequent also ground to a halt. As the days, months and years passed, he would have his ups and downs. He continued to have a distinctly ON period after breakfast every morning when he was able to go to the bathroom by himself.
Appa has always been short tempered and the disease is truly one of a kind. Of course, every disease seems like the worst to those suffering it but PD has got to be up there in that list. It exposes the patient in every aspect possible. It brings out your darkest side to be laid open for others to see. Appa belongs to a generation where the boy child was the apple of the eye for his family and the spouse was entrusted with the care and upkeep of the house and the kids while he would be the bread winner. He never confided his thoughts to anyone in the house - keeping his work pressures and tensions to himself and being very quiet most of the time. A a result, we never really understood the man behind the figure of a father. He never really learnt to express himself or his thoughts to anyone. But the disease doesn't care. The medications don't care. Some of his shortfalls such as a tendency to be lazy, a tendency to depend on others and expect others to respond to his weakness in a positive way, his extremely short temper have all been brought out in excruciating detail. Some of these traits are masked by us in our younger days as we learn to be more mature and take things in our stride. With PD, you are completely exposed. Everyone around can see you suffering and wonder what is wrong.
Over the years, all of us would insist on him exercising more frequently, tell him to not lose hope. He was a voracious reader - he would read books and had a genuine interest in Hollywood movies and cricket. He started to fall more frequently while trying to get up from the chair or while walking. His sense of balance started to desert him along with an onset of continence. Even till 2008/09, he was able to walk by himself at times when the need arose. He was never a social person and going out to visit some relatives sometimes proved to be an ordeal too big to overcome for him. His tremors would increase and his rigidity would take over. After experimenting with a walking stick to give him some balance for a few years starting 2005/6, we bought a wheelchair for him in 2009. If nothing else, it was to help take him out a little more frequently. It was simply not worth the trauma for him or for us as caregivers to have him undergo the scrutiny of a thousand eyes of people looking at him as he struggled to take a step.
Days move into months, months into years - they were numbers for him as he turned 60. An age when his classmates would retire saw him on a wheelchair struggling to make conversation. At times, we look wistfully at some 70+ year olds walking around, traveling on their own, being independent. If we, as his children, realize it once in a while, we can only imagine the thoughts that run through his head. What must be going through his mind?
2. Surgery
In 2002, the year that I graduated from Engineering college, Appa opted for Voluntary Retirement under the VRS scheme announced by the Central Government. We were always cocooned away from the happenings at his office and the announcement did not surprise us. The conditions under which he retired from office were not happy - we heard some stories of an inquiry being conducted against him and some others over a venture that they had begun in 1996 which had had dealings with his company. In any case, I reckon that he was finding it more and more difficult to proceed with his official work given the progression of the disease and took the decision because it was the right one to make.
Like almost all the Engineering college students in Hyderabad at the time, I too had written my GRE exam, had admission in a couple of colleges in the United States and had even managed to get my F1 student visa. I was due to fly out in August to join University starting from Fall of 2002. Appa's friend suggested a new treatment from a Doctor who had supposedly returned from the US, in Pune, who was offering a full cure for Parkinson's Disease using a stem cell transplantation technique which would involve, obviously, a surgery of the brain. We made a couple of trips to Pune to visit with the Doctor who showed us a few videos of some of his patients and the supposed improvements that they had had after the surgery.
Appa decided to go ahead with the surgery which would change our lives further forever. It was in June, 2002 that the date for the surgery was set and we drove up to Pune, taking advantage of the hospitality provided by one of Appa's classmates from college who used to live there at the time. The surgery was performed at the Ruby Hall Clinic. It was a first time grown up experience for me - I was 21 years old at the time and obviously, had better be mature enough to manage the emotional trauma surrounding the surgery.
The operation involved the Doctors placing a device to hold the patient's head in place and then make an incision. Under medication, the patient would be wheeled out of the operation theater through to the MRI scanning center where after a MRI scan, the Doctor would know exactly where the stem cells were to be placed (in the substantia negra, IIRC). I vividly recall the sight of Appa on the stretcher with the paraphernalia around him, being wheeled out of the MRI scan room. He was surrounded by nurses and Doctor and that is when it hit us that this was a serious, major surgery. Amma had her sister and brother over to help her get through the ordeal. My sister was on the phone with her beau, I was on the phone with my friend of the time! We all had our outlets but that sight of Appa as he came out of that room will remain. After an entire day long surgery, the Doctor announced that all was well but of course, he would have to keep him in the ICU overnight as he had just finished a major surgery.
A couple of other memories from that hospital. The first was at the ICU where the incompetent nurses were using his arms like a pin cushion. The number of needles that went into his arm that day for blood tests and IV and God alone knows what else was huge! A day after the first surgery, a CT scan revealed that there was some kind of an air bubble in the brain which would require a second surgery to clear out. One of the quack's cohorts at the hospital performed this second surgery after which Appa was a lot better, for a while only. The second memory was from his room. Amma's brother and I stayed with him at the hospital as caretakers for the patient. He was high on medication at the time - the dosage of his PD medication was increased, ostentatiously, to help with the initial few days while the transplanted cells come on to their own. One of the side effects of the medication is hallucinations, of course. So he got out of bed that night, went out into the corridor despite us trying to stop him - he thought that he was in office and wanted to know what was happening with some task that he had assigned someone.
He was discharged from the hospital soon enough and taken home where the convalescence started. He would struggle to reach the loo on time to relieve himself - he lost control of his bladder. I remember Amma's struggles starting since then. He would not sleep well at night any more - this was probably happening a lot even before the surgery but of course, we did not know as such things were not mentioned to us. I remember he had a lot of hiccups post surgery and that quack who operated upon him asking us to give him sugar to bring it under control, knowing full well that he was diabetic. His counter argument was that his was Type -II Diabetes which would not be affected by sugar intake. As a result, we started using diapers to counter his incontinence. We soon left Pune to return home to Hyderabad. It was a 12-14 hour journey with Amma, Appa and Amma's brother who was, quite simply, a Godsend. I wouldn't realize at the time about the sacrifices and the kind nature of the man in helping his brother-in-law get through the torture. We returned home - in a sign of things to come, Appa asked me what was happening to the "satellite launch" on our way back to Hyderabad.
We arrived home and another scene etched in memory is Amma's brother actually lifting him and taking him to the bathroom and back as he was quite incapable of walk at the time. He even cleaned up after him - what a man! My utmost respect for him for being there. The weeks that followed saw some more drama. A blood sugar test showed Appa's sugar levels reach a dangerously high 350 mark. His local Doctor, another jackass, put him on a diabetic medication that brought it right down. One evening, Appa basically collapsed with hypochondria or a huge fall in blood sugar. We called the Doctor home who, I will never forget, earned my wrath and disrespect for being a complete nincompoop. He did not touch him but asked for him to be moved to the hospital. It was because of his medication that Appa was in that state and his pronunciation was to move him to the hospital and off he went back to his clinic as there were "other patients" waiting for him. A ride to Apollo Hospital and back followed with the ambulance in tow. We took him to that hospital as it was closest to home and they revived him and also took him for a CT scan for good measure. Of course, Apollo is more inclined to make money rather than care for the patient - we moved him out soon enough and took him to another hospital, Remedy Hospital which was on the panel of approved hospitals at his office. He spent a few days in that hospital on two separate occasions which had its own memories. A night time shave by a half asleep orderly to help with the catheter insertion, a relaxing, oblivious of his surroundings Appa being visited by many well wishers, a talk between Mawa and I and another between Amma's sister and I which helped me decide not to go ahead to the US at the time, leading to a cancellation of my tickets, Appa calling sister and me to his bedside for the "last time" as he thought he wouldn't live any more and so on. We returned home after what now seems to be like a very long time. I think it must have not been more than 3 days at a stretch on both occasions at Remedy Hospital.
Like almost all the Engineering college students in Hyderabad at the time, I too had written my GRE exam, had admission in a couple of colleges in the United States and had even managed to get my F1 student visa. I was due to fly out in August to join University starting from Fall of 2002. Appa's friend suggested a new treatment from a Doctor who had supposedly returned from the US, in Pune, who was offering a full cure for Parkinson's Disease using a stem cell transplantation technique which would involve, obviously, a surgery of the brain. We made a couple of trips to Pune to visit with the Doctor who showed us a few videos of some of his patients and the supposed improvements that they had had after the surgery.
Appa decided to go ahead with the surgery which would change our lives further forever. It was in June, 2002 that the date for the surgery was set and we drove up to Pune, taking advantage of the hospitality provided by one of Appa's classmates from college who used to live there at the time. The surgery was performed at the Ruby Hall Clinic. It was a first time grown up experience for me - I was 21 years old at the time and obviously, had better be mature enough to manage the emotional trauma surrounding the surgery.
The operation involved the Doctors placing a device to hold the patient's head in place and then make an incision. Under medication, the patient would be wheeled out of the operation theater through to the MRI scanning center where after a MRI scan, the Doctor would know exactly where the stem cells were to be placed (in the substantia negra, IIRC). I vividly recall the sight of Appa on the stretcher with the paraphernalia around him, being wheeled out of the MRI scan room. He was surrounded by nurses and Doctor and that is when it hit us that this was a serious, major surgery. Amma had her sister and brother over to help her get through the ordeal. My sister was on the phone with her beau, I was on the phone with my friend of the time! We all had our outlets but that sight of Appa as he came out of that room will remain. After an entire day long surgery, the Doctor announced that all was well but of course, he would have to keep him in the ICU overnight as he had just finished a major surgery.
A couple of other memories from that hospital. The first was at the ICU where the incompetent nurses were using his arms like a pin cushion. The number of needles that went into his arm that day for blood tests and IV and God alone knows what else was huge! A day after the first surgery, a CT scan revealed that there was some kind of an air bubble in the brain which would require a second surgery to clear out. One of the quack's cohorts at the hospital performed this second surgery after which Appa was a lot better, for a while only. The second memory was from his room. Amma's brother and I stayed with him at the hospital as caretakers for the patient. He was high on medication at the time - the dosage of his PD medication was increased, ostentatiously, to help with the initial few days while the transplanted cells come on to their own. One of the side effects of the medication is hallucinations, of course. So he got out of bed that night, went out into the corridor despite us trying to stop him - he thought that he was in office and wanted to know what was happening with some task that he had assigned someone.
He was discharged from the hospital soon enough and taken home where the convalescence started. He would struggle to reach the loo on time to relieve himself - he lost control of his bladder. I remember Amma's struggles starting since then. He would not sleep well at night any more - this was probably happening a lot even before the surgery but of course, we did not know as such things were not mentioned to us. I remember he had a lot of hiccups post surgery and that quack who operated upon him asking us to give him sugar to bring it under control, knowing full well that he was diabetic. His counter argument was that his was Type -II Diabetes which would not be affected by sugar intake. As a result, we started using diapers to counter his incontinence. We soon left Pune to return home to Hyderabad. It was a 12-14 hour journey with Amma, Appa and Amma's brother who was, quite simply, a Godsend. I wouldn't realize at the time about the sacrifices and the kind nature of the man in helping his brother-in-law get through the torture. We returned home - in a sign of things to come, Appa asked me what was happening to the "satellite launch" on our way back to Hyderabad.
We arrived home and another scene etched in memory is Amma's brother actually lifting him and taking him to the bathroom and back as he was quite incapable of walk at the time. He even cleaned up after him - what a man! My utmost respect for him for being there. The weeks that followed saw some more drama. A blood sugar test showed Appa's sugar levels reach a dangerously high 350 mark. His local Doctor, another jackass, put him on a diabetic medication that brought it right down. One evening, Appa basically collapsed with hypochondria or a huge fall in blood sugar. We called the Doctor home who, I will never forget, earned my wrath and disrespect for being a complete nincompoop. He did not touch him but asked for him to be moved to the hospital. It was because of his medication that Appa was in that state and his pronunciation was to move him to the hospital and off he went back to his clinic as there were "other patients" waiting for him. A ride to Apollo Hospital and back followed with the ambulance in tow. We took him to that hospital as it was closest to home and they revived him and also took him for a CT scan for good measure. Of course, Apollo is more inclined to make money rather than care for the patient - we moved him out soon enough and took him to another hospital, Remedy Hospital which was on the panel of approved hospitals at his office. He spent a few days in that hospital on two separate occasions which had its own memories. A night time shave by a half asleep orderly to help with the catheter insertion, a relaxing, oblivious of his surroundings Appa being visited by many well wishers, a talk between Mawa and I and another between Amma's sister and I which helped me decide not to go ahead to the US at the time, leading to a cancellation of my tickets, Appa calling sister and me to his bedside for the "last time" as he thought he wouldn't live any more and so on. We returned home after what now seems to be like a very long time. I think it must have not been more than 3 days at a stretch on both occasions at Remedy Hospital.
1. Initial Days
My father, who I will refer to as Appa, was first diagonised with Parkinson's Disease in 1991. He was just 42 years old at the time. His father passed away in July, 1991 and during the visit there for the last rites to be performed, he noticed some of the symptoms of Parkinson's. He visited a neurologist after returning to Hyderabad who, after conducting a few tests, delivered the verdict that he had Parkinson's. I was all of 10 years of age at the time and obviously, I was completely oblivious to his condition. I don't remember if anyone actually mentioned to me that he had Parkinson's at the time.
I can only imagine Appa's reaction to the disease. He must have been shattered but I vaguely remember him putting in a whole lot of effort into researching about the disease. He must have realized the magnitude of the disease and the effect that it would have on his life and the life of his family, pretty quickly. He was immediately on medication to help him slow the progress of the disease. I do know that he was able to live his life as usual for a few years - at least until 1999 or so. Right through this time, no one really told me nor did I bother to find out more about the disease itself. Appa had a surgery in 1996 at the Manipal Hospital in Bangalore. I was not told about the seriousness of the surgery - it was a brain surgery performed by Dr. Venkatraman who was experimenting with a technique to stop the tremors on one side of the body. The surgery was successful in so much that Appa's tremors on the right side of his body stopped completely.
The initial years had seen an increase in the tremors on the right side of the body but post the surgery, it stopped completely. Time moved on, people recommended various treatment techniques to help combat the progression of the disease. My mother and he even traveled to Kerala for 3 - 4 weeks to undergo Ayurvedic treatment at Kottakal. All these were honestly, of no avail. Even during this time, I had no cognizance of the severity of the disease or the affect that it would have in our life later on. The credit for all this must go to my parents. Not once did I have to compromise on my studies or on any of my activities because of his deteriorating condition.
There were other treatments attempted - Reiki, Accupressure, homeopathy, you name it and it was given a shot. I remember that we traveled to Mhou in Madhya Pradesh, to an Army base station thanks to Appa's friend, Colonel Virk. We met with a Doctor there who suggested Accupressure and even trained Amma and I in that so we would be able to apply it on Appa. This continued for a few months as well. His sleep patterns changed - he was finding it difficult to sleep at night and we even had an audio cassette from the Doctor which would supposedly help him sleep. Nothing worked for more than a few days.
In the meanwhile, our life carried on - we bought a new flat in Secunderabad. I was heavily involved in the legwork at the time. I would visit the construction site often and report on the progress being made. It was in 1998 that we finally moved in to the 3 bedroom apartment. Appa had stopped driving by that time. He was exhibiting some of the classic symptoms of the disease such as an inability to control his motion. He would find it difficult to stop walking at times, it would appear as if he were being pushed suddenly. While accelerating in the car, he wouldn't have control on his foot which would keep the pedal pushed to the floor which even lead to a small accident on the road. He gave up driving soon after.
In hindsight, it surprises me that we actually went ahead and bought a car in 2000, registered in his name. He did not drive the car, but he did ensure that he had taught Amma driving well before this. It would prove to be one of his many prescient moves. The years 2001-02 brought about a lot of turbulence in his office life.
I can only imagine Appa's reaction to the disease. He must have been shattered but I vaguely remember him putting in a whole lot of effort into researching about the disease. He must have realized the magnitude of the disease and the effect that it would have on his life and the life of his family, pretty quickly. He was immediately on medication to help him slow the progress of the disease. I do know that he was able to live his life as usual for a few years - at least until 1999 or so. Right through this time, no one really told me nor did I bother to find out more about the disease itself. Appa had a surgery in 1996 at the Manipal Hospital in Bangalore. I was not told about the seriousness of the surgery - it was a brain surgery performed by Dr. Venkatraman who was experimenting with a technique to stop the tremors on one side of the body. The surgery was successful in so much that Appa's tremors on the right side of his body stopped completely.
The initial years had seen an increase in the tremors on the right side of the body but post the surgery, it stopped completely. Time moved on, people recommended various treatment techniques to help combat the progression of the disease. My mother and he even traveled to Kerala for 3 - 4 weeks to undergo Ayurvedic treatment at Kottakal. All these were honestly, of no avail. Even during this time, I had no cognizance of the severity of the disease or the affect that it would have in our life later on. The credit for all this must go to my parents. Not once did I have to compromise on my studies or on any of my activities because of his deteriorating condition.
There were other treatments attempted - Reiki, Accupressure, homeopathy, you name it and it was given a shot. I remember that we traveled to Mhou in Madhya Pradesh, to an Army base station thanks to Appa's friend, Colonel Virk. We met with a Doctor there who suggested Accupressure and even trained Amma and I in that so we would be able to apply it on Appa. This continued for a few months as well. His sleep patterns changed - he was finding it difficult to sleep at night and we even had an audio cassette from the Doctor which would supposedly help him sleep. Nothing worked for more than a few days.
In the meanwhile, our life carried on - we bought a new flat in Secunderabad. I was heavily involved in the legwork at the time. I would visit the construction site often and report on the progress being made. It was in 1998 that we finally moved in to the 3 bedroom apartment. Appa had stopped driving by that time. He was exhibiting some of the classic symptoms of the disease such as an inability to control his motion. He would find it difficult to stop walking at times, it would appear as if he were being pushed suddenly. While accelerating in the car, he wouldn't have control on his foot which would keep the pedal pushed to the floor which even lead to a small accident on the road. He gave up driving soon after.
In hindsight, it surprises me that we actually went ahead and bought a car in 2000, registered in his name. He did not drive the car, but he did ensure that he had taught Amma driving well before this. It would prove to be one of his many prescient moves. The years 2001-02 brought about a lot of turbulence in his office life.
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