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How to get drugs to treat Covid symptoms if you have Parkinson’s disease

Parkinality columnist Julie Walker, of Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease in her 50s

This week, this column is brought to you by the letter C.

C is for the causes of Parkinson’s disease (PD).

Readers who have come to the Parkinality column relatively recently, possibly after being intrigued by a photograph of a middle-aged lady sporting a post-operative shaved head, might be wondering what this PD thing is all about. So, for those readers, what is PD?

I have lived with PD for 11 years. It is a chronic, degenerative and (currently) incurable condition. When I say I live with PD, it “just” makes my life more complicated. Chronic means it lasts a long time and degenerative refers to the fact that it gets worse over time. Many clever people are searching for a cure, hence the optimistic currently being in brackets.

Declining dopamine production in the brain is the key to PD. By the time I first noticed the symptoms I would have lost around 80% of my dopamine and could have had PD for a few years.

Scientists are working on a cure for Parkinson’s disease. Picture: iStock
Scientists are working on a cure for Parkinson’s disease. Picture: iStock

Allow me to repeat myself and use an analogy I wrote in an earlier column to explain the role dopamine plays. In basic terms, dopamine is responsible for transporting messages, originating in the brain, to the rest of the body to move. No dopamine = no movement.

To simplify things, think of the brain as a pigeon coop and the pigeons as dopamine carriers. Most people have enough dopamine and carrier pigeons for life. However, in people with PD the dopamine-producing area is damaged and dying prematurely.

Want to kick a ball? In a healthy brain, there is plenty of dopamine and pigeons to take the messages originating in the brain to the foot and leg to move and kick the ball. However, in someone living with PD there is often a breakdown in communication. There is often not enough dopamine to transport the message from the brain. No message = stationary ball.

The medication and now my DBS (deep brain stimulation) surgery attempt to temporarily replace the dopamine. I write the Parkinality column not only to spread awareness of PD, but also in the hope that it makes people think that everyone has something going on in their lives.

C is for Covid.

Lightning struck twice, ironically on the driest, hottest Autumn day, when the Wise(ish) Man and I tested positive for Covid for a second time.

I had heard that people with PD could be considered for antiviral medication. Those “lucky” enough to meet certain criteria can still order testing kits for free from the NHS. The results from these tests must be recorded on the NHS Covid app.

After my positive test I rang 119 and then my GP. A nurse then triaged me (not as bad as it sounds, merely meaning you will be assessed). Please be prepared to patiently answer the same questions with each person you speak to. Please don’t fret - at the time of writing, deja vu is not a Covid symptom.

It was decided that I would benefit from the antiviral drugs. These drugs are neither a cure nor a vaccination, but they should help to reduce the symptoms and hopefully reduce the need for hospitalisation.

The NHS very efficiently couriered the medication to me. By the time the medication arrived, I was very unwell. For me, the antivirals were amazing as they started working immediately and they reduced my symptoms.

When it works, the NHS is a marvellous institution.

C is for Community Cars.

As you will imagine, the Wise(ish) Man and I have a lot of medical appointments between us. For the safety of both us and other drivers, we gave up our driving licences several years ago. With advancing PD and increasing medical appointments, this is a problem.

Community Cars scheme poster
Community Cars scheme poster

The community car scheme was set up 10 years ago. For those like us, this voluntary organisation provides an indispensable service.

The scheme not only needs users, it also needs drivers. If you are interested in being a user or a driver, call 0300 123 1677.

Users must live in East Herts or Broxbourne. The cost for the first 10 miles is £5, then it costs 50p a mile thereafter. The money is paid directly to the driver. The service is mainly for medical appointments, but will consider other journeys.

To find out more about the brilliant scheme, visit communityalliancebeh.org.uk.

Dance yourself dizzy.

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