2 The impact of Parkinson’s

2.1 Introduction

Having worked through Section 1 [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]   you have a general understanding of what parkinsonism is, what Parkinson’s is, their causes, how many people have Parkinson’s and the average age at which they are diagnosed. You also now know how Parkinson’s is diagnosed and how it progresses.

In this section we look at the following questions:

  • How can I help people with Parkinson’s manage their symptoms?
  • What impact does Parkinson’s have on people’s daily life?

This section starts with a short video recorded by Tracy Jack. In the video, Tracy introduces herself, where she works and what she gained from doing this course. She also talks about the impact of Parkinson’s on the daily lives of the people she works with, and looks at how the course has helped her develop her own practice.

Download this video clip.Video player: nc_parkinsons_2016_vid008-640x480.mp4
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Tracy Temple
Some of our clients do live with Parkinson’s, and the course, I felt, had a deep impact on me. I knew a little about Parkinson’s before I started and the experience that some of my clients go through on a day-to-day basis, but the course actually opened up my eyes entirely. I understood the bigger impact of all of the services working together can have on the quality of life for an individual, and how important we all are, and no team is greater than another. We’re all working together for the fulfilment and improvement of an individual’s life.
I think one of the biggest things that I’ve learnt is how the Parkinson’s medication works, and how vital it is for the person living with Parkinson’s is to have the medication on time, all of the time. And how somebody with Parkinson’s can be going into an off stage, and the symptoms can become more exaggerated. And it’s a highlight to think, well, maybe they’re due the medication, or if it’s not, that this might be an underlying cause.
I think probably Parkinson’s people can freeze when they’re moving. And just a simple queuing technique of maybe one-two, one-two, or singing a song or giving them something else to focus on to break the pattern of the freezing has enabled the mobility to continue. And when the person is walking freely, they’re obviously feeling much better about themselves and not stuck or feeling awkward.
One of my clients, in particular, was maybe considered to be a little awkward, so I had a look at the care package that was going in. And discovered that what was happening is the carer’s were going in in the morning, getting him up out of bed, giving him his medication, and things were moving along very slowly. And he wasn’t able to work, although he was trying to work with them, he wasn’t able to.
So I had a look at this and spoke to the Parkinson’s nurse. Because having read the material in the course and read his specific type of medication, I realised that he should actually be getting it 30 minutes before food. So I spoke to the GP. I spoke to the Parkinson’s nurse and said, this client, he has this type of medication.
He’s having these difficulties, that his medication is being given at this time. Is this something that we need to address? And they said, actually yes. So now the care package is actually being changed. So the carers go in. They give him his medication. They don’t ask him to do anything for 30 minutes. And then he’s able to get up out of bed. He’s able to mobilise. He’s able to get to the bathroom freely. And he’s able to communicate better because it obviously improves his speech as well.
I think one of the biggest challenges was actually incontinence, as both fecally and of urine as well. Not necessarily a challenge for me, but a challenge for the client. Because they were aware of this problem, odours and obviously mess. And it was very difficult as this problem was causing the client to withdraw socially, to sit away from other clients because he was aware that there was an odour. There wasn’t anything in particular he could do about that. But having sort of understood that this is a problem.
It’s a non-motor problem that we were able to address that. And right when the client came in, taking him to the bathroom. Allowing them time to use the bathroom, and if necessary, we have change of clothes here. And to make sure that everything in that department is comfortable and fresh. And that gave that individual back the ability to sit with other people and sort of feel included again.
I suppose one of the biggest impacts on carers is the motor symptoms, the mobility. Sometimes your client can get stuck in a chair. You maybe need two carers to try and encourage them to be able to manoeuvre. I think non-motor skills is a drool, which a lot of clients have, which I think it isn’t necessarily an impact for the carers, but I think it’s an impact for the client. For a carer, we’re just constantly monitoring fluid intakes, making sure that they have tissues to dry themselves.
As far as managing diet and fluids is concerned, we have had a look at the clients that we have, looking at their dietary needs, fluid needs. I think with all of this non motor symptoms, being the drooling, that obviously we need to ensure that the client does have enough fluids. And the fluids are being topped up, not just at meal times, but throughout the day if they’ve got plenty to drink because that’s the danger of dehydration.
And with food, speech and language is another organisation that can help somebody with drooling. It’s an indicator that all’s not well in the throat. So maybe some types of foods are not the best type of foods for a client to be eating.
Now with regard to the fluctuations in Parkinson’s, I’ve come to understand that most of the fluctuations can be caused due to an on-off period with the medication. That if somebody is having a dip, it could be a signal that they’re due the medication, and it often is. The fluctuations can be caused by lack of fluid or constipation or any of these things where it’s not allowing the medication to be absorbed into the system properly.
So you need to have a look at what’s happening with the person. Chat with them, and see how they’re feeling, and maybe have a look at whether it’s the medication that needs tweaking. The medication might not be as effective as it had been. There might be a change in the Parkinson’s, a dip in the Parkinson’s. Or it could be a simple conversation asking are they going to the toilet regularly? Are they constipated? Are they feeling unwell?
There are things that I do differently now. And I think the things I do differently now is that I’ve got new eyes looking at Parkinson’s. I don’t just look and think, oh, maybe having a bad day. Now I think well, why are they having a bad day? Did they have their medication this morning? Check with the Nomad System that the medication has gone out. Ask the client did they get the medication on time in the morning. And if they hadn’t, then you approach the care provider. What happened? Why didn’t they get the medication on time?
I have had to explain the nature of fluctuation to the people I work with. Not so much in my workplace because we’re all undergoing this training, and we’re talking about it. And so we’re educating each other as we’re going throughout the day. But I think more in the community where there doesn’t seem to be the same level of understanding of Parkinson’s. I feel that’s this Parkinson’s training actually should be rolled out to everyone.
I personally feel it should be mandatory, so that everybody understands, because Parkinson’s is a much bigger deal than I think we give it credit for. So yes, I have spoken to care providers. I’ve actually spoken to social workers. And actually have asked a social worker to listen to an audio section of the training because it had such an impact on me.
And we were having a review with one of my clients, and I said before you speak to this client, can you please listen to this audio that Parkinson’s UK have provided because that audio has allowed this person who is living with Parkinson’s, they’ve asked poignant questions.
That person’s had time to answer the question, and this is how they actually really feel. Whereas you might be asking this person the same question in a moment, and this person’s going to say to you, yes, I’m absolutely fine. Where you’ve given time to answer the question, he’ll tell you really he’s not. And I think the social workers who listened to that audio were actually deeply affected, too. So potentially life changing.

[Music playing]

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Learning outcomes

The purpose of Section 2 is to give you an understanding of the impact that Parkinson’s can have on an individual and their loved ones. We will discuss both the motor symptoms and non-motor symptoms, and how they can be managed.

By the end of this section you should be able to identify and describe:

  • the common challenges that the main motor and non-motor symptoms present to a person with Parkinson’s
  • how Parkinson’s can fluctuate and how this impacts on the person living with the condition
  • the ways in which these challenges can impact on a person’s quality of life
  • how Parkinson’s can affect a person’s relationship with their loved ones
  • how a person’s preferences are taken into account when supporting them to manage their Parkinson’s.

2.2 How can I help people with Parkinson’s manage their symptoms?