Gulshan Pruthi, 56 from Delhi took 24 years to get a diagnosis of Vascular Parkinsonism after consulting various doctors, doing multiple tests, trying different therapies. She narrates her experience and how she copes with this rare condition.
When were you diagnosed?
I was diagnosed with Vascular Parkinson’s Disease (also called arteriosclerotic parkinsonism or vascular multi-infarct parkinsonism) in 2019 after 24 years.
What were the early symptoms? What made you go to a doctor?
My early symptoms were weakness on the left side, problem in moving left leg, difficulty in holding things and picking up objects with a stretched arm.
In 1995, while cleaning the temple, I fell down. It was a tailbone fracture and I was advised rest for a whole month. I resumed my work as Math lecturer but noticed could not hold things properly with my left hand. A physiotherapist suggested I consult a Neurologist. My husband and I went to a hospital to see one who declared it was pseudo case and referred me to a psychiatrist. I was admitted to the hospital for 6 weeks and on discharge told to continue meds for a year and assured that there would be no more problems. On the way back, I was sitting on the two-wheeler, when I felt my left leg go numb. I was dragging my leg by the time we reached home. Anyways, I continued the meds for a year. During that time, I did seek more opinions but was misdiagnosed with epilepsy, migraine etc. I noticed confusion as one of the side-effects of the meds, I was on. One neurologist did warn me that this was not a psychiatry problem but a neurological issue. He told me to get admitted for a month for observation. I was not ready for that and in retrospect, it was my biggest mistake. I went on to consult more doctors, Homepaths and Ayurveds, but found no answers and temporary relief.
In 2006, my daughter was born and that gave some momentum to my life. She was like a gift from God for me and my husband. I spent all my time in her upbringing and this made me forget about my disease. My family was very helpful in caring for her as well. Life moved on. I did have an episode of syncope in 2009 while doing yoga. This was my 3rd time falling and fainting.
Then in 2012, I had sudden ear pain which subsided with meds. A year later the pain returned with more severity. My ENT told me to get more tests done including an MRI. The MRI came back negative but there was suspicion of hemiparesis. In 2019, along with the ear, my tongue, jaw and teeth were aching. Doctor suspected Trigeminal neuralgia and ordered more tests. A PET Scan was done to check for my dopamine levels. The neurologist informed me that this was not traditional Parkinson’s. I was diagnosed with multiple lacunar infarcts in the basal-ganglia region of the brain. My struggle for a diagnosis had finally ended, I had Vascular Parkinson’s disease. Since my HUTT test came out positive, meaning I had neurogenic cardiac dysfunction, there was no medication available to treat me.
In 24 years, several tests have been done including EEG, ECG, MRI (4-5 times), HUTT, ELR, ECHO, PET Scan etc.
What was your reaction to the diagnosis? How and when did you break it to your family?
When I was finally given a diagnosis after 24 years, there was no reaction because by then, I was mentally prepared for any type of declaration by the doctor. On the same day, I informed my family.
I continued treatment from my Neurologist, who had advised me for PET Scan. The medication remained the same.
Were there any complications from the primary condition?
Yes, my movement became increasingly difficult and bizarre. I now have stiffness while changing position from sitting to standing and vice-versa. I also have some problems with neck movement.
What medications are currently on?
Currently I am on Inderal and neurobion, along with homeopathy and ayurvedic supplements.
Are there any side-effects of the medicines? If yes, how do you manage them?
Sometimes, the heart beat does become irregular due to Inderol. I stop it for a few days with doctor’s advice. I have now started drinking plenty of water and concentrate on deep breathing consciously.
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
At this time, I am only consulting my Neurologist.
Do you have a family history of this condition? Is it an inherited disorder? Was genetic testing done?
No family history. No genetic testing was done.
What changes have you made to your lifestyle because of this condition?
I always try to keep myself cool and calm. I take rest whenever I feel tired. Take care of my nutrition, have a light diet. I avoid negative people, reduce overthinking, never compare my life with others and take help from others whenever needed. Always try to learn how to manage life with this problem.
Whenever I find situation difficult, I remember my mother and God. I take lessons from the Bhavagat Gita, pray to God and discuss my issue with friends who are positive.
How has your family supported you? Who has been your biggest support/companion through it all?
My parents who are now no more, my brothers and sister-in-laws are my biggest support. At every stage, my husband always motivated me to thinking positively and that is why I am so calm. My daughter counsels me whenever she feels I need it. She is the biggest counselor in my life as psychology is her favorite subject. Parenting of my daughter in itself is a treatment of my disease.
My colleagues at workplace are equally cooperative and helped me continue my passion for teaching.
When did you break the news to your friends and distant relatives? How did they take it?
I didn’t break this news to my distant relatives. I informed my friends as soon as I was diagnosed in 2019 after struggling for 24 years. They assured me that I could manage it. They were satisfied that at least the problem has been diagnosed.
What were some of the challenges you faced?
During the 2nd wave of Covid, my husband, mother, daughter and I all got Covid. My husband was quite serious and my mother did pass away due to the infection. That was the biggest loss of my life.
What is your present condition?
Now I feel that the disease is progressing slowly but I’m also acquiring more ways to manage it by better understanding, through PDMDS, family support and the internet.
What is your advice to patients who face similar challenges?
- Spend time with your children and loved ones.
- Believe in karma, be good to everyone.
- Pursue your hobbies and passions.
- Appreciate yourself. Take care of your appearance.
- Try to engage in some task or the other.
- Do light exercises whenever you feel comfortable.
This experience is in partnership with PDMDS
