1.10 Summary

We have now looked in detail at what parkinsonism is, what Parkinson’s is and what causes it, how many people have Parkinson’s, and the average age at which they are diagnosed. We have also looked at how Parkinson’s is diagnosed and how it progresses. Hopefully you have considered how this information can help you improve your practice and increase, where appropriate, the involvement of other health and social care professionals.

The following exercises will help you consider the impact of living with Parkinson’s. They will test what you have learnt and give you the opportunity to research services in your local area.

Exercise 1.1

We will now look at an exercise that focuses on a case study. You can record your thoughts in your reflection log.

Think back to the information in Section 1 about people who are diagnosed at a relatively young age. Remember, it is vital to focus on the stages of Parkinson’s and not the age of the person you are caring for when considering their care needs.

Case studies are common with health and social care professionals and are a way for you to explore your learning through looking at real lives. This is the first of a series of case studies that you will encounter on this learning journey. The exercises will help you develop your understanding and refine your knowledge. They can act as a useful practice for the exercises at the end if you choose to submit material to gain credit.

Please think about the emotional, social and psychological impact of Parkinson’s on the case study subject and their family. Also, think about how they feel about the progression of the condition. Use your reflection log [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]   to record your thoughts.

Case Study 1.1 Daxa’s story

Daxa is 55 and lives in Leicester. She was diagnosed with Parkinson’s in 2019. Here she shares her story.

My journey began in 2016. At the time I had a stressful role in child protection and prevention work. Initially I noticed a small tremor in my right hand. Then I began having falls, one of which led to me needing surgery on my shoulder.

Although I saw a neurologist about my problems, she thought I had anxiety and that was causing my tremor. I was sure there was more to it, and started keeping a diary of all my symptoms. Soon the tremor became more noticeable – it felt like all the muscles in my hand and foot were contracting and my fingers were getting stiff and sticking together.

I’d find myself freezing like a statue and my family saw how slowly and stiffly I was moving. By this point I had a long list of symptoms, and I had a strong feeling that it might be Parkinson’s, so I decided to get a referral to another neurologist. The neurologist disagreed, and said I was suffering from stress-related tremors. He suggested that my other problems were probably because of the menopause.

Looking back now, I know at that point I should have pushed back and insisted on more tests. At the time, though, I felt like my symptoms were still manageable and I had a big round-the-world cruise trip planned. So I waited.

The adventure of a lifetime? 

In January 2019 I embarked on a 4-month cruise trip across the globe with my cousin. Just 2 weeks into the trip my symptoms started getting worse – I had excruciating muscle pain in my right arm and leg, chronic fatigue, and cramping in my toes. I took painkillers and tried some alternative therapies to try and alleviate my symptoms.

I had to take life on the cruise ship one day at a time and tried to cope as best I could. Normally I’m an active and fun-loving person, but my pain and discomfort meant I couldn’t stay focused, and I struggled to sit or stand for long without becoming fatigued. It was also hard not being able to fully enjoy all the activities and excursions on board.

When I returned home, I was determined to finally get confirmation of what was causing my symptoms. 

Getting answers

I started seeing my GP regularly. We tried lots of different medications, including hormone replacement therapy to see if my symptoms were linked to the menopause. But 3 months later, I was still suffering and the me

Eventually my GP agreed to make another referral to a neurologist, but there was a significant waiting list.

At my dad’s 80th birthday party a couple of months later, my family were shocked to see the deterioration in my health. I was becoming increasingly disabled, and my symptoms were impacting my day-to-day life. As a family, we decided I should see a private neurologist as soon as possible.

At my very first appointment the neurologist told me that he suspected I had Parkinson’s. He started me on Parkinson’s medication and immediately scheduled me for a DaTSCAN. After just a few weeks, I could feel my symptoms improving and I really wanted to get the results of my scan to finally get a confirmed diagnosis.

When my neurologist told me I had Parkinson’s, he was very reassuring and helped to ease my anxieties. I was lucky I was able to see a private neurologist so quickly. I felt listened to and valued as a person, and I was so grateful that I had gone with my gut instinct and found someone who really took what I was saying on board.

Adapting to life with Parkinson's

I often remind myself that my future is in my hands – I’m in control of my own life.

My medication is helping, although some of the side-effects like feeling dizzy, drowsy and nauseous are hard to cope with. I’ve been trying out different alternative therapies too, including reiki, meditation, yoga and herbal treatments. Making other positive changes in my life is helping – I’m eating more healthily and pushing myself to walk as much as possible.

I have plans to start dancing, travelling, and volunteering again. My Parkinson’s might make this challenging, especially as it’s so different every day, but I’m determined to try.

What I’d really like is to be a positive role model for other people going through their own journey to diagnosis. In the Indian community in particular, there is a lot of reluctance to talk about disabilities – I’d love to help change people’s attitudes and inspire more people to share their stories.

Everyone’s life is different, and this is mine. Getting a diagnosis wasn’t easy, but I’m learning more every day and gradually adapting to life with Parkinson’s.

My Parkinson’s journey continues.

Now try the Section 1 quiz.

This is the first of four section quizzes. You will need to try all the questions and complete the quiz if you wish to gain a digital badge. Working through the quiz is a valuable way of reinforcing what you’ve learned in this section. As you try the questions you will probably want to look back and review parts of the text and the activities that you’ve undertaken and recorded in your reflection log.

Personal reflection

At the end of each section you should take time to reflect on the learning you have just completed and what that means for your practice. The following questions may help your reflection process.

Remember this is your view of your learning, not a test. No one else will look at what you have written. You can write as much or as little as you want, but it will be helpful for you to look at your notes when preparing for your assessment.

Use your reflection log to answer the following questions:

  1. What did I find helpful about the section? Why?
  2. What did I find unhelpful or difficult? Why?
  3. What are the three main learning points for me from Section 1?
  4. How will these help me in my practice?
  5. What changes will I make to my practice from my learning in Section 1?
  6. What further reading or research do I want to do before the next section?

Exercise 1.2

Using the template supplied, create a community map of support contacts in your area for a person with Parkinson’s. It may include contacts with local statutory or voluntary services, informal contacts within your community, and anything else you think shows a picture of your local area.

You might find it useful to speak with other colleagues, use the internet or visit your local community centre. In the centre of the template is the person with Parkinson’s. Write in as many different support contacts as you can find in the circle below.

If you are part of a study group, this is an activity that you could undertake together.

Now that you’ve completed this section of the course, please move on to Section 2.

1.9 How does Parkinson’s progress?