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Submitted by PatientsEngage on 20 January 2015

Mrs Balasubramaniam has been looking after her husband, 83, who has Parkinson’s Disease, for more than a decade. She shares symptoms, treatments and caregiving tips.  

When was your husband diagnosed with Parkinson’s Disease?

My husband was diagnosed with Parkinson’s Disease about 10 to 12 years back, but he probably had symptoms much before that were not very noticeable, such as mild abnormality of gait or sticking out his tongue occasionally.

What were the early symptoms? 

We consulted a doctor when we noticed increasing unsteadiness in his gait. I noticed he would swerve to one side while walking; his hands were a little wobbly while lifting objects. He would often stick out his tongue. His fine movements had deteriorated (like the ability to tie shoe laces). Over the years, he found it difficult and then impossible to button his shirt, and his handwriting deteriorated. 

Is there a history of Parkinson’s Disease in your family?

No.

What is his present condition?

It has been 10-12 years now. As expected, the disease has progressed quite a bit. He requires help while walking. He walks with the help of a stick. Getting up from lying or sitting position is a big problem, due to the tendency to fall. He has sustained a number of falls and a couple of fractures also. Parkinson’s has gradually affected his mastication and swallowing functions also, so that his meal times are very prolonged. There is drooling of saliva occasionally. However, he does not have a mask-like expressionless face or finger tremors, which doctors say are typical of Parkinson’s. His voice has become soft and speech is not as distinct as when he was well. Night sleep is disturbed at times, with hallucinations and nightmares and jerks.

He has also been mildly depressed.  As regards cognition, there has been a deterioration over the last 5 years with particularly the last 2 years being more pronounced. There is mild confusion with incomplete understanding of what's spoken to him. Part of this issue is also due to gradual hearing loss and partly due to cognitive ability going down.

Please describe your experience of managing Parkinson’s Disease.

It requires a lot of patience and understanding in dealing with a patient with Parkinson’s Disease. The caregiver has to be constantly by his side and very alert to his condition to prevent falls, things dropping from his hand, or spilling hot tea on himself, etc. He needs help to dress and undress, bathe, eat. Since he cannot quickly stand up and get whatever he wants, he constantly needs someone for fetching his spectacles, the newspaper, the telephone, his snack, water, etc. Due to poor finger coordination and also deterioration in cognition, he cannot dial the telephone number of relatives himself, he has to be helped for that. So, the caregiver is on duty 24x7, 365 days a year.

What medication is he on?

He is on Syndopa Plus and Syndopa CR, Pramipexole, and Quitiapin. 

Were there any side-effects of the medicines?

Medicines have so many side effects and vary from individual to individual. My husband has tolerated his medicines fairly well, with slight dosage management here and there. 

Increase in hallucinations have occurred with increase in medications. The doctors titrate his medicines according to the benefit versus side effect. 

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

It is not the patient who faces the challenges as much as the caregiver. I know it is a bit awesome to think of the enormity of the situation but I suppose one gets used to it in due course. Every day is a challenge as one finds some new symptom. My advice would be to be very patient and understanding and deal with the situation as and when it happens. 

What kind of specialists do you consult and how often?

Our main doctor is a neurologist and another is a psychiatrist. Both the doctors are gems and are largely responsible in mitigating our troubles and are constantly encouraging us. We go to them every 3 months for review. In addition, not least, is a very good physiotherapist. Physiotherapy is a must - regular balance, coordination and muscle strengthening exercises, and also swallowing, tongue and voice exercises, help in decreasing rigidity and the resulting body aches, and improve balance. 

Have you had to make some changes to your lifestyle because of your condition?

Yes, we don’t go out except for mandatory visits to the doctors or walks in the evening. My husband used to be responsible for many aspects of running our household, which I have had to slowly take over.

Have you tried complementary medicine or therapies, like homeopathy or yoga?

Yoga is said to be useful and we persuade him to practise “Om” everyday as it also helps to bring out his voice and is good for the lungs. 

Has it been difficult emotionally for you to cope?

Yes, it has been difficult to cope and I presume, it will become more and more difficult as the days pass. As I mentioned earlier, new symptoms appear each day, and one has to face new challenges off and on.

How has your family supported you?

The family has supported us very well throughout. Our children and their spouses have been a source of strength all this time and without their support we would have been nowhere. Manpower is essential at times of crises, and emotional support is essential to keep everything going.

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