Precautions for people with Parkinson’s Disorder (PD) during Covid 19

From the onset of Covid-19 and the resulting lockdown, it has been a time of anxiety for many of us, irrespective of having a neuro degenerative disorder like Parkinson’s.  For some of our members with PD, yoga, meditation and online sessions of support group meetings have been helpful during these challenging times 

 To maintain mental and physical health during these uncertain times, a few tips – 

·      Exercise regularly – either indoors / backyard or on terrace 

·      Cut down physical contact, but for the absolute essentials

·      Maintain contact through phone / apps

·      Contact with your physician about best times to visit and ways to minimize risk

·      Continue taking medication as before and stock them up

·      Always have medicine delivered by local pharmacy

·      Participate in some web-based or virtual classes 

·      Play indoor / board games with family members

·      Maintain hygiene at home – wash your hands if you went out, sanitise doorknob, ensure caregivers wash their hands, wear a mask if someone comes home to deliver / while interacting with domestic help. 

·      If you do not have any Covid-19 symptoms, you can move outside and maintain social distancing. This situation may change over time, so ensure to check with your local governing agencies. 

My Covid Days

Our member Mr. Veeeravasantarayalu (71 years) has this to say on his Covid-19 lockdown days. He has been with PD for three years now, but his energy levels and positive outlook about life remains intact!

ME AND COVID-19 LOCK DOWN : I was longing, in fact prayed God to give me a time to sit and meditate without external or internal disturbance. Oh..GOD.. He answered my prayer and that too in the name of lock down. I am glad and should thank GOD. But a doubt is it the right time. A fear came from the bottom and started chasing me. Will the covid-19 come to me? In what way it will spread? Should be more cautious and knowledgeable by more T V channels. To my surprise i found for each channel a dedicated person making me to fear in his own way. On the other hand the government made their contribution. This has pushed me to more channel more time on TV. Now i conclude viewing TV is also a type of meditation THANK GOD.

Covid Thoughts

This poem is by one of our caregivers, Ms. Shanta Mathew. Her husband, Mr. Mathew has been affected by PD for 6 years. She is a published author in her own right, an amazing baker and one of the most vivacious carers! These are her thoughts on quarantine during Covid-19. Hope you enjoy it as much as we did!

A teeny , weany, meanie virus on prowl,
Gates are locked , behind the closed doors man growls.
Hugs become weapons , handshake make him shudder.
Life and death play a game of hide and seek.
In masks and gloves all in Superman suits.
Netflix and you tube become his soul soup .

The planet is in the repair mode
Let us pause and ponder at nature’s wonder

The shadow of fear looming all around
Color, caste or country , virus has no boundary.
The mad rat race came to a sudden halt.
The fright made him freeze, hit him like a thunderbolt.
Social distancing, namaste, the preventive theme,
Not joining dots , breaking the chain is the game .

The planet is in the repair mode,
Let us pause and ponder at nature’s wonder.

Man is in home stay, animals on free way.
Air is clean, sky is clear, man and nature in harmony.
Ice on glaciers , lush in forest , not in man’s grip,
Dolphins come to greet , birds merrily chirp.
Baby boom sure , many get ‘Corona’ surname .
Divorces ,dating apps surge , add in the list of blame.

The planet is in the repair mode,
Let us pause and ponder at nature’s wonder.

The earth is still rotating, seasons change.
Even this will pass by , not a mere adage.
Salute the warriors and all the guardian angels .
Look inside , around; learn lessons from all angles.
Man is a survivor , will bounce back soon .
Let the changes sweep , let love bloom.

The planet is in the repair mode,
Let us pause and ponder at nature’s wonder.

                

Managing Parkinson’s Disorder (PD)

This blog is written by one of our members, Mr. Anand.  He has shared some positive ways that helps a person to manage Parkinson’s Disorder.

“YOU MAY BE THE STAR OF PUBLIC AS YOUR MOVEMENTS WILL BE FUNNY. BE HAPPY YOU ARE GIVING A CHANCE TO LAUGH” it is a god’s gift.

 A few steps which will help you to fight PD.

  1. Do not hide, be open about PD.
  2. Speech will not be the same after PD.  It will be as if you have taken four pegs.  No everyone will understand what you say – so give speech therapy a chance! 
  3. Get a job and be occupied, so you have no time for small talk.
  4. Enrich yourself by reading, develop some interest in gardening or painting or any hobby.
  5. Get out of the house as often as possible, so that you meet like minded people and avoid toxic people.
  6. Attend support group  meetings of PD patients group and share your problems. New ideas may emerge as they say necessity is the mother of invention. 
  7. There are moments where your physical equilibrium may be affected and you may experience fall because of balance problem. To avoid these, do some basic exercises.  
  8. For me, Syndopa110 has been a saviour. What works for me is to start the day with half tab with lime juice half an hour before breakfast and then others  after breakfast.
  9. Have a positive outlook never say die. Think PD is an extension of cold / fever and so you will be okay soon. Miracles can happen but do not rely only on that. 

Good diet to alleviate anxiety in Parkinson’s disorder

People with Parkinson’s can often experience non-motor symptoms such as anxiety. This can have severe effects like chronic fatigue, sleeplessness, affecting work and relationships to the extent that they may avoid social engagements. Anxiety also causes fear, worry or nervousness. These fears are typically not based on reality, for instance on perceived judgements and imagined criticism.  

Causes of anxiety 

The causes are not entirely clear, however many people with Parkinson’s have been found to have low levels of these nutrients (such as iron, vitamin D, and vitamin B6) which are related to anxiety. Hence fixing these deficiencies can take care of most of the issue. 

How do you know if you have nutrient deficiencies?

In consultation with your doctor, test your blood for levels of iron. If levels are very low, the doctor may prescribe supplements or even injections, to bring your blood levels back to normal.

Follow the chart for vegetables and fruits rich in Vitamin D and Vitamin B6.

Vitamin D rich foods
Vitamin B6 rich foods

Workplace and Parkinson’s Disorder (PD)

Parkinson’s Disorder is different for everyone. How it affects one’s ability to work depends on their type, stage and severity of the symptoms  and the kind of work they do. Some people with PD can work more years after their diagnosis. Some people who find that their symptoms make work difficult and hence transfer to a different, more manageable job or work part-time. Others are unable to continue in their jobs after a year. The issue intensifies specially of a person is affected at a young age (Young Onset of Parkinson’s Disorder – YOPD). 

For instance, one of our members is YOPD and faces difficulty in working as a mechanic due to tremors. 

Regarding PD and work, a few things one considers are –

  • Should I tell my employer that I have PD? If so, when?
  • Are there ways to lengthen my ability to work despite my PD?
  • When I reach this point, what are my options for disability payments?

A few tips that can help – 

  • Talk to a counselor
  • Share your concerns and issues with close family and friends who can help you think through  
  • Take help of occupational therapists who can help with specific expertise in work rehabilitation.
  • Consider asking for PD specific accommodations that can help mitigate the effects of motor or non-motor symptoms on your employment (include flexible work hours, telecommuting, scheduled naps, designated breaks, close parking space, adjustments to work space, changes in the location of workspace, adjustments to keyboard and mouse).
  • If PD worsens and if accommodations are not enough to sustain employment, as an option of final resort, you may consider utilizing disability benefits which can help you with a few financial needs.

My journey with Parkinson’s

I am Ford Ebenezer and was diagnosed with Parkinson’s Disorder in 2008  at the age of 33 yrs. The diagnosis was a huge shock to me, since I had not heard of the disorder before and I questioned what will become of my life. 

However, I am managing my daily activities with medicine support and a lot of self motivation. I am now live in Chennai and have lived with PD for 10 yrs. As a management professional I have a business in catering and oil distribution. 

Every day I brisk walk for at least an hour, although walking in the morning is difficult without taking my PD medication. I am able to drive both, a two wheeler and car. I also play cricket, Badminton and I keep myself occupied.  I hope that God will do a miracle in my life to get rid of this weakness.

I want to encourage people affected by PD to never give up in your life. Be confident and face this world boldly in all aspects. We should overcome this weakness by doing Yoga, Physiotherapy, Cycling, Swimming, Dancing and brisk walking. I understand that age is a constraint but do exercise which supports your body. I wish you all a happy living.

“Family is not an Important thing it is everything”.

Here is a Heroic wife (with holding name) who have shared about her beloved husband’s PD journey .

When my husband joined “The Central Bureau of Mines” at Nagpur in December 1962 he was just 20 years old .The bureau of mines was then conducting an exploratory mining projects as a part of an integrated prospecting process for minerals. Moving from IBOM to Geological Survey of India and then to Mineral Exploration corporation he finally returned to GSI from where he retired in 2005.

The accommodation would be tents during mining. Each camp was a mini – India as a staff were from different parts of the country . There were encounters with man eating tigress, leopards, bears, and mostly snakes. Once I was there in the bathroom and there was a 2 feet long snake on the opening latch. Somehow I managed to open the door swiftly and came out when once I lifted a pressure cooker from the ground. There was a snake coiling around the vessel.

Just after retirement he went to an orthopedist for treating his knee pain. When he told the doctor that he was unable to wear his dress or dress up. The doctor immediately recommended him to a neurologist who diagnosed him Parkinson’s Disorder.

He was put on to lot of medicines and nerve vitamins . So far the past 14 years my husband is battling with Parkinson .He has internal tremors ,trunk twist ,difficulty in speaking , freezing etc.

We did nor realize it earlier, however it looks like the use of carbide lamps and pollution in the mines might have caused “Parkinson’s disease” in the later years.

My husband and I continue to manage this debilitating disorder with the help of our loving daughter and our extended family.

Small Shuffle Steps in Running World

Having small, shuffling steps are one of the signs of neurodegenerative Parkinson’s Disorder (PD). Also this condition, which is known as Parkinsonian gait, is caused by changes in posture, slow movement and also freezing.

“Gait is our manner or pattern of walking” when we walk our body is normally upright, neither leaning forwards nor backwards, with an even stride and arms swinging at the sides we will have good balance.

Parkinsonian gait is a distinctive, less steady walk. The person who has Parkinsonian gait feels, their feet dragging on the ground; freezing – feeling feet are stuck to the floor. This affects  balance and increase the risk of falling.

Our members have most of these issues. 

To  overcome Freezing

  • Change direction: if you can’t move forward, try stepping sideways and then go forward.
  • Carry a laser pointer in your pocket; when you freeze – shine the laser in front of your foot and step on the light – this cue can help you re-start.
  • Visualize an object on the ground in front of you and try to step over it.
  • Wear a metronome on your belt or carry a small one in your pocket – turn it on and the external beat can help you re-start.
  • Try humming a song and time your re-start with the beat of the music.
  • Count “1-2-3-go” and then step forward.
  • Weight shift side to side to help initiate taking a step.
  • March in place a few times and then step forward

To maintain balance

  • Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
  • Attempt to swing both arms from front to back while walking. This may require a conscious effort if PD  has diminished your movement. 
  • Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
  • Do one thing at a time! Don’t try to walk and accomplish another task.
  • Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
  • Move slowly when changing positions. 
  • Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. 
  • Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
  • If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. 

Once you’ve mastered walking with help, you may be ready to try it on your own again!

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