Health and wellness
Living with Parkinson’s
About 7 million people in India are said to be afflicted by Parkinson’s Disease, a degenerative disorder of the central nervous system. One of the main hindrance in its treatment is the lack of awareness, something that organizations like the Mumbai-based Parkinson’s Disease and Movement Disorder Society (PDMDS) is trying to combat. We spoke to Dr. Nicole D’souza, Physiotherapist of the PDMDS to know more about Parkinson’s Disease and how to cope with it.
* What exactly is Parkinson’s disease?
Parkinson’s disease (PD) belongs to a group of conditions called movement disorders. It is a neurologic syndrome usually resulting from the deficiency of the neurotransmitter dopamine as a consequence of degenerative, vascular, or inflammatory changes in the basal ganglia (the part of the brain that controls movement). A person with PD has abnormally low levels of dopamine. This is because the Dopamine-generating cells, known as dopaminergic neurons (types of nerve cells) in the substantianigra part of the brain die slowly. Without dopamine, the nerve cells in that part of the brain cannot properly send messages. This leads to the loss of muscle function. The damage gets worse with time. Exactly why these brain cells waste away is unknown.
*At what age is it most likely to occur?
Average age of PD onset is approximately 50 to 60 years. The incidence of this disease increases dramatically with increasing age. However, in the past few years, the incidence of this disease in those younger than 50 has also been increasing. In about four to five percent of cases the sufferer is younger than 40 years. When signs and symptoms develop in an individual aged between 21 and 40 years, it is known as Young-onset Parkinson’s disease.
* What are the symptoms of PD?
PD is a chronic (long term), progressive (gets worse with time) disease of the nervous system characterized primarily by certain cardinal Motor symptoms (related to movement):
- Tremors: Trembling in fingers, hands, arms, feet, legs, jaw, or head. Tremors most often occur while the individual is resting, but not while involved in a task. Tremors may worsen when an individual is excited, tired, or stressed.
- Rigidity: Stiffness of the limbs and trunk, which may increase during movement. Rigidity may produce muscle aches and pain. Loss of fine hand movements can lead to cramped handwriting (micrographia) and may make eating difficult.
- Bradykinesia: Slowness of voluntary movement. Over time, it may become difficult to initiate movement and to complete movement. Bradykinesia together with stiffness can also affect the facial muscles and result in an expressionless, “mask-like” appearance.
- Postural instability: Impaired or lost reflexes and reactions can make it difficult to adjust posture to maintain balance which results in recurrent falls and injuries.
- Parkinsonian gait: Individuals with more progressive Parkinson’s disease develop a distinctive shuffling walk with a stooped position and a diminished or absent arm swing. It may become difficult to start walking and to make turns. Individuals may freeze in mid-stride and appear to fall forward while walking.
* Does it affect only movement or is there a chance of further body and brain disorientation?
While the main symptoms of Parkinson’s disease are movement-related, progressive loss of muscle control and continued damage to the brain can lead to secondary symptoms. These vary in severity, and not every individual will experience all of them. Some of the secondary symptoms include:
- Speech problems – slowed, quieter, unclear speech, and monotone voice
- Difficulty swallowing and excessive salivation
- Confusion, memory loss, and dementia (more common in elderly individuals)
- Aanxiety,depression
- Impulse control disorders
- Constipation
- Diminished sense of smell
- Increased sweating
- Male erectile dysfunction
- Skin problems
- Urinary frequency/urgency
* Could it lead to dementia?
Parkinson’s disease dementia (PDD) is a type of dementia that occurs when a patient with Parkinson’s disease develops a progressive dementia at least two years after a diagnosis of Parkinson’s disease has been made, and other causes of dementia have been ruled out. Approximately 25-30% of all patients with Parkinson’s disease also have dementia, but after having Parkinson’s disease for 15 years, the prevalence of PDD increases to 68%. PDD is usually different in how it presents itself from Alzheimer’s disease.
* How much awareness is there about PD in India? Do people take it as seriously at least in the initial stages?
Awareness about PD in India is low both in urban and rural areas with many people living undiagnosed. With a limited number of neurologists and a large population in the country even diagnosed patients lack an understanding of their disease.
Most people do not take the disease seriously until it starts affecting their work and daily activities. However, we have seen through experience that patients who are provided information about the disease and have been counseled, tend to take the disease seriously right from the initial stages.
* Is there a taboo associated with it? Do some people want to keep it a secret?
As such PD is not a taboo word. However, like any disease in India, the sufferers are subjected to accusations of wrong or evil doing based on superstitious beliefs. A large part of which is due to the lack of awareness.
Most patients especially the younger, working adults try to keep their disease a secret out of fear and embarrassment. Fear of losing their job, of not being able to support their family and live independently and fear of dying. Embarrassment stems from the fact that PD symptoms are difficult to conceal even in the initial stages and for some may even be socially inappropriate. The lack of awareness among the general population further worsens the situation.
* What are the available treatments for PD? Does the person need to go through extensive therapy?
There is no known cure for Parkinson’s disease. The goal of treatment is to control symptoms. Medications control symptoms, mostly by increasing the levels of dopamine in the brain. Doctors usually prescribe levodopa (L-dopa), which helps replace the brain’s dopamine. Other drugs may be prescribed which affect dopamine levels in the brain. At certain points during the day, the helpful effects of the medication often wear off, and symptoms can return.
Surgery may be an option for some patients with Parkinson’s disease. These surgeries do not cure Parkinson’s, but may help ease symptoms.
- Deep brain stimulation involves placing electrical stimulators in specific areas of the brain that control movement.
- Another type of surgery destroys brain issues that cause Parkinson’s symptoms.
- Stem cell transplant and other clinical trials are currently ongoing.
PD is a progressive disorder and thus requires extensive lifelong therapy. Although medications are the mainstay of treatment, patients with PD require interventions from a multidisciplinary team (Physiotherapist, speech therapist, occupational therapist,psychologist, dietician etc.,) to enable them to live independently and to their fullest capabilities.
* How should a person with PD be taken care of by the family? For instance, should the family involve him/her in activities and exercise and a regular life as much as they can?
It is very important for the family members to understand the disease and its many disabling manifestations. It is usually a lack of awareness that leads to constant misunderstandings and frustration between the patient and caregiver.
The patient should be allowed to carry out all the activities that he performed prior to the disease provided he has the capacity to do so and can do it without causing harm to himself. The more active a patient is the better he is able to deal with the disease.
* Do caregivers need any special training?
Caregivers need special training which focuses on education about signs and symptoms, handling and lifting techniques, strategies for helping patients carry out their daily activities (rolling in bed, getting up from a chair), strategies to overcome freezing phenomenon (patient gets stuck in a position and is unable to move unless a cue is given) training in the use of assistive devices and coping strategies for depression, anxiety, impulse control disorders, memory loss and hallucinations.
* How important are support groups for PD?
It has been said that “a group can often do the work that individual therapy cannot do.” We believe that support groups provide the best setting for the PD patient and their caregivers to gather information and understand their disease. Parkinson’s support group members can offer each other emotional and practical support. Getting together with other people who are facing similar challenges makes people more open to sharing feelings and experiences. As well as providing benefits from the exchange of practical information, support groups also provide motivation and inspiration to help a patient deal positively with the changes in their lifestyle. It also gives PD patients a chance to meet new people, which help to break down any feelings of social isolation associated with the disease. Support group meetings range from group discussions, to educational sessions by guest speakers or just social outings.
Photos courtesy: PDMDS, Mumbai
Coming soon: Support Groups and Helplines for Parkinson’s Disease. Watch this space!
Comments
Jyoti
25 Nov, 2019
Hi , can you tell me names of the top Parkinson specialist in Bangalore?
Anonymous
17 Sep, 2018
Sir I am Ashok my father is suffering from Parkinson and I reside in Delhi ,he take syndopa plus medicine 4 Times a day and getting advise from st.stephon hospital Delhi.please suggest any pd center in Delhi.
Silver Talkies
17 Jan, 2018
Hi Preeti, Yes, in Pune you can contact the Parkinsons Mitra Mandal for the same. Call Mr Karmarkar on 9423338164
Preeti
16 Jan, 2018
Hi, My mom is suffering from PD for last 4 years. Please advise a support group in pune.
Silver Talkies
14 Jan, 2018
Hi Delrina, Thank you for writing to us. For your research we would suggest reaching out to ARDSI and Parkinson's Society as they are better placed to help you. Regards Silver Talkies team
Silver Talkies
29 Nov, 2017
Dear Savio, Mumbai has an excellent option in Parkinson's Disease and Movement Disorder Society. They are in South Mumbai but do call them and they would be able to guide you about a support centre or service your mother could use. Try 919987216057 or 022 66106249. Good luck. Silver Talkies Team
Savio M
29 Nov, 2017
My parents live independently in Santa Cruz(E) Mumbai, My father has PD for some time and is not confined to the bed while my mother is caring for him with help of a friend. Can you suggest an option for some support services where she can get respite (rest), as he is very vocal at night leaving her to be fatique and disturbed alternatively is there any Old age homes that can look after him in the condition he is currently. Your reply is appreciated.
Syed
13 Aug, 2017
Whatsup group called PNGO-IND This group has been created for easy and quick interaction between PD patients and support community. All PD patients and support community can Kindly send your request to whatsup number 7204488124 to add you to the group. Regards Syed
Sanjeev
24 Apr, 2016
Thanks to all for sharing your views and information here. My query. My father is suffering from PD for last few years .he is 76 and based in solapur. Currently he is not able to walk for last 2 weeks. I am looking for care centre either in pune or in solapur. If anyone can guide me.
Silver Talkies
22 Mar, 2016
Thank you Mr Mane. Several people visit this page and if anyone in Pune is interested, they can contact you.
Ramesh Mane
22 Mar, 2016
Hii, frist of all, i want to special thanks to silver talkies for parkinson support not only for Maharshtra as well as out of maharashtra also, I am neurotherpist in pune. this is a medicineless indian therapy . so, i am intrested to help the PD patient by Neurotherapy .(Dr.Lajpatrai Mehra Neurotherpy) once in week ( sunday only) i am redy to give free trt. to PD patient bt only for pune. i hope sillver talkies will be think about this . thanks .
Silver Talkies
30 Aug, 2014
Dear Bhumica, Please contact the Parkinson's Mitra Mandal Pune to know if there is a Delhi chapter. Cell No. 9423338164. Thank you, Team Silver Talkies
Bhumica Rajani
28 Aug, 2014
I want to know the address and number of mitra mandal in new delhi
Shobhana Tirthali
25 Jun, 2014
Dear MrMakrand See Web sight of Parkinson mitrmandal pune pmmp.anubandh.org you know all about mitramandal also articles about Parkinson, links of some useful videos
Silver Talkies
26 Mar, 2014
Hi Fiona, You can check out Aaji Care and Silver Innings in Mumbai for your father. https://www.aajicare.in/aarambh-elder-care-centre/ http://silverinnings.in/
Fiona Fernandez
23 Mar, 2014
Hi, My father has Parkinsons since 2015.He has mobility issues esp at night but no tremors. He was in an old age home since Dec 2019 however because of Covid he had to be brought back home since the home was shut down due to a staff shortage crisis. Would you know of any old age home in and around Bombay that takes such patients like my father? Fiona
Silvertalkies
13 Nov, 2013
Dear Shilpa, This is a medical query and we need to check with the doctors and revert. Please check a reply in the comment thread if you wish to contact some of them. Otherwise please give us some time to get back. For caregiving India Home Health Care is an option we know of. They have been featured on the site under Service Providers.
Anonoymous
27 Oct, 2013
[...] Parkinsons Disease and how to cope with it [...]
Vivek
23 Sep, 2013
Thank you sir.
Silvertalkies
22 Sep, 2013
Hi Vivek, you may contact the following and check regarding speech therapy. Parkinson’s Disease Society of Karnataka Divine, 11/14, Jayamahal Extension Bangalore 560046, Karnataka State, India Tel: +91-80-23332668 Tel: +91-80-22341224/5 Alternatively, you can also contact Nimhans: Movement Disorder Specialists: Dr. Pramod Kumar Pal, MD, DM Fellowship in Movement Disorders (Vancouver, Canada) and Human Motor Physiology (Toronto, Canada) Additional Professor of Neurology NIMHANS Phone (Off): +91-080-26995147 E-mail: palpramod@nimhans.kar.nic.in Dr. Ravi Yadav, MD, DM Associate Professor of Neurology NIMHANS E-mail: raviyadav@nimhans.kar.nic.in Neurosurgeons: Dr. Dwarakanath Srinivas, MS, MCh CNS-Sugita Fellow in Functional Neurosugery (Toronto, Canada) Associate Professor of Neurosurgery NIMHANS Phone (Off): +91-080-26995724 E-mail: dwarakaneuro@yahoo.com Dr. A. Arivazhagan, MCh Assistant Professor of Neurosurgery NIMHANS E-mail: arivazhagan.a@gmail.com
Silvertalkies
21 Sep, 2013
Hi Vivek, we shall try our best to find this out for you.
Vivek
21 Sep, 2013
Hi.I am from Bangalore.My dad aged 60 was diagnosed with parkinsons one year ago .Initially he had difficulties while walking and have been consulting many doctors including ayurveda and again recently we consulted a doctor in fortis hospital,(Bangalore) and he prescribed medicines for it.But matter of the fact is ,my dad's voice is getting quieter,and weak.He tends to get emotional as he is not able to communicate with others ,so could you please suggest me any doctor or hospital in Bangalore so that he could improve speech.
Anonymous
03 May, 2013
iamaman 72 old ihave no tremor but hving slow walking , im balece always fatigue my voiceis good haing constupation adr told it is pd aother dr, nothing in pd it is belong to depression can cotact a good sy ciatric what can do ??? any itake syntoba110 4 times daily with rasatac ---1mg in morning oly daily but ihaye kneepain also.plz give me a good direction
Puja
21 Oct, 2012
My dad is suffering from PD for past 3 yrs. He is 73. He was prescribed medicines like syndopa 110mg and pacitane. His condition is getting worst day by day. He was hospitalized for almost 3 months. He is bedridden now. He is neither able to swallow nor able to speak clearly now. He is on PEG tube feeding. His is become anemic. His heart EF rate is only 40%. I am looking for an expert dietician who can suggest best diet plan for bedridden Parkinson's patient.
Silver Talkies
20 Oct, 2012
Hi Puja, You can contact the support group Parivarthan for Parkinson's in Chennai. Their email id is parivarthanforparkinsons@gmail.com and website is https://parivarthanforparkinsons.wordpress.com/ Thanks, Silver Talkies team
Silver Talkies
17 Oct, 2012
Dear Puja, You haven't mentioned where you are residing currently. We would advise you to call Parkinsons Disease and Movement Disorder Society Mumbai and get their advice regarding this. Email: pdmds.india@gmail.com Office No: +919987216057; +91 22 66106249 Mailing Address: Parkinson’s Disease and Movement Disorder Society Room 131, MRC Bombay Hospital, 12 Marine Lines, Mumbai – 400020, India Our best wishes for your father's speedy recovery.
Puja
16 Oct, 2012
Looking for a dietician in Chennai
Silver Talkies
05 Oct, 2012
Dear Nidhi, You can call Parkinsons Disease & Movement Disorder Society in India to check if they have a support group in Chandigarh. Their contact details are below: Email: pdmds.india@gmail.com Office No: +91 22 22068787; 24977477 They also have a list of support centres here: http://www.parkinsonssocietyindia.com/support-for-you/locate-a-support-center/"
Nidhi
22 Aug, 2012
Hi, is there such a support group in chandigarh that you can suggest please?
Silver Talkies
07 Jul, 2012
Hi Sakshi, The Parkinson's Disease and Movement Disorder Society has a list of support centres here: http://www.parkinsonssocietyindia.com/support-for-you/locate-a-support-center/ If you want to know further, you can contact them on the following numbers: 022-22068787; 022-24977477 Hope this helps. Silvertalkies Team
Sangita
30 Jun, 2012
My dad is 74 year old , he had been diagnosed with Parkinson n dementia , now his behaviour has become aggressive . Is there any care centre at Pune or Solapur please help.
Silver Talkies
09 Jun, 2012
Dear Saily, We are hoping to get a reply to your query soon. However, for PD related support, you can also contact the Parkinson's MitraMandal Pune. Here are their details: R H Karmarkar,1119 Sadashiv Peth,Chintamani Apts, Pune 411030, Ph No.020/24475718, Cell No. 9423338164. The Mandal conducts regular monthly meetings for PD Patients, Dance classes thrice a week,etc. Their website is http://www.parkinsonsmitra.org/ We hope this helps. Silver Talkies team
Saily Shah
08 Jun, 2012
I forgot to mention in my earlier query that i stay in pune.
Silver Talkies
07 Jun, 2012
Hi, We shall send your query to our Parkinson's experts and revert soon. Silvertalkies Team
Saily Shah
06 Jun, 2012
Hello everyone. My dad(age around 60) is diagnosed with PD recently. Initially(Few months back) his left hand used to tremor(Shake) and now both his hands shake...I am worried and confused about what type of treatment should be followed-allopathic or ayurvedic treatment? Or a neurotherapist can treat him? I have heard that ayurvedic treatment is the best treatment. Is this true?am very worried for him. Please help me. Can you also please suggest me few names of the good doctors who can treat my dad?.
Sakshi
03 Jun, 2012
Hello everyone, Its been five years since my father has been diagnosed with PD. He takes his medicines regularily. Drugs that are prescribed to him are syndopa, pacitane, ropark and distinon. But his condition has not improved. It has become worse. I want to know if there is any care center in J&K or a nearer state where group therapy for PD is done properly.
Silver Talkies
01 May, 2012
Dear Suman, Please contact: Parkinson’s Disease Society of Karnataka Divine, 11/14, Jayamahal Extension Bangalore 560046, Karnataka State, India Tel: +91-80-23332668 Tel: +91-80-22341224/5 Website http://www.parkinsonssocietykarnataka.com Good luck!
Suman
30 Apr, 2012
Hi, i was wondering if there are any support groups for Parkinsons in Bangalore. Thanks Suman
Delrina
18 Apr, 2012
Hello I’m conducting a research wherein my population is Caregivers of Parkinson’s And caregivers of Alzheimer’s. I need help with data collection i.e. questionnaires are to be filled. Would be grateful if I could get a few references
Shilpa
18 Mar, 2012
Hi All, My mother has been having PD from past 11 yrs and she is on Parkinson medications since then. After her flight back from US 3 weeks back she had severe hallucinations and had to get her admitted in hospital where they completed stopped the PD drugs and restarted it with consistent increase of Qutapine to control Hallucinations. Currently she also take 1-1-2 or 100 mg of Qutapine. Hallucinations are still there but the intensity and consistency is reducing gradually and we are also as family able to support her and help her manage it better slowly. The scary thing is that she is not able to believe us that what is happening to her is hallucinations. Qutapine is causing her severe constipation and wanted to check the following things: Is there a better way to manage the situation from a long term perspective. Constant use of QUtapine is not a great option as it in itself has a lot of side effects. Is there any professional caregivers whom I can hire to help her during the fulltime in bangalore. Any input / help / advise is desperately needed PLEASE
Silvertalkies
17 Mar, 2012
Dear Mr. Makarand, Parkinson's Mitra Mandal doesn't have a formal office address but you can contact one of their executive committee members. They will be able to give you the address for their meeting point. Nos. of some of them are here below Mr. R.H. Karmarkar - 09423338164 Ms. Shobhana Tirthali - 09673114843 Mr. S.V. Barve - 020-24483104
R H Karmarkar
16 Mar, 2012
Information for Ms Jyotsna, Mr Makarand, and aii other Parkinsons Patients in and around PUNE. There is a Parkinsons Support in Pune run by"PARKINSONS Mitramabdal"C/o R H Karmarkar,1119 Sadashiv Peth,Chintamani Apts, Pune 411030, Ph No. o2o/24475718, Cell No. 9423338164. Mandal conducts regular monthaly meetings for PD Patients, and Dance classes thrice a week,etc.
Makarand
14 Mar, 2012
Sir I want to know address and contact no of Parkinson,s Mitra Mandal at Pune
Silvertalkies
13 Mar, 2012
Thank you for the information, Mr. Karmakar
Jyotsna
07 Mar, 2012
thanks a lot for mr barve's contact. i have mailed him. i could not locate parkinsons mitramandal on google search. i really appreciate your help in this. thanks again
Silvertalkies
05 Mar, 2012
Sorry forgot to mention the name of the support group. it's called Parkinson's Mitra Mandal
Silvertalkies
04 Mar, 2012
Hi Jyotsna, I do know of the Parkinson's Support Group in Pune. Give us a few days and I shall get you the number. The Sancheti Institute for Orthopaedics and Rehabilitation in Pune could also give you some leads on this. Once again, I'll try to find you some numbers. Thanks
Jyotsna
01 Mar, 2012
hi,my mother aged 74 was diagnozed with parkinsons last nov 2012..she is on syndopa now on a daily basis. i am keen to know and join a support group both for her and for me as her caregiver. i would appreciate any link-suggestions and am based in pune. thanks in advance
Admin
27 Feb, 2012
Dear Jyotsna, in Pune you can contact Mr. S.V. Barve: 020-24483104 vijaybarve@gmail.com Hope it helps
Kalpana
15 Feb, 2012
Hi, I had an aunt who had this Parkinson and she deteriorated suddenly. First symptom I saw was the tremors and then ofcourse suddenly she wilted like a flower and passed away. It was quite sad. When was deducted with Parkinson, she took her medication but I think the medication did not work on her as well it should have been. Your article is extremely crisp and informative. Thanks for bringing in all the aspects of Parkinson.
Silvertalkies
14 Feb, 2012
Thanks for sharing Kalpana. The credit for the article goes to PDMS, Mumbai
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