Work and Parkinson's: my employer and me

Leah's story: "I call them my 'school family'"

In early 2014, I was trying to back the display boards with paper to put children’s work up in class. I really struggled to hold the paper with one hand and staple it with the other. But I thought it was just me. 

A few months later, my husband noticed my arm didn’t swing when I walked. There was weakness in it, too. I got my diagnosis at 42 and it was a total shock. I was in disbelief and felt sick. I didn’t want to speak to anyone. But I got up the next day and went to work. I had a job to do and bills to pay. 

My biggest champions 

The staff knew I was going for scan results. Everyone was lovely about the diagnosis. I call them my ‘school family’, so why wouldn’t I tell them? 

I’ve worked at the school for 20 years. Jane has been the headteacher since I started there. Both school and Jane have been my biggest champions. 

Making adjustments 

When I was diagnosed, the symptoms were quite mild and I just needed to carry on as normal. 

Once I went through the door, it was the children’s needs that were important. Since then school has put a lot in place to support me. It’s always been a case of whatever I need.

For example, there are 2 disabled parking spots. She simply asked me, "Which one do you want?", so it was reserved for me.

I’ve gradually reduced my hours. Now I finish at midday, go home and sleep on the sofa.

Coping with the challenges

When I’m having a challenging day, I’m really slow and get frustrated. That’s when the tears come. Jane will say I can go home if I need to. Whereas I can feel the changes in my body, the staff can see them. So they look out for me.

When it’s icy, there is always someone checking that I don’t slip. Or staff say not to do playground duty if the weather is bad. There’s a lot of flexibility on a day-by-day basis.

Managing medication

My medication makes me feel sick. So if I’m not having a good start, Jane suggests I stay at home, or I’ll go in later.

When my medication hasn’t worked, I sit down at a table and the children come over instead of going round helping them. The staff know when my medication is working and I’m 'on', as well as when I’ve 'run out of batteries'. But they are really mindful and wait for me to say I need some help.

Teaching school about Parkinson’s

I wanted to change my Parkinson’s into something positive. So we’ve held assemblies on World Parkinson’s Day and non-uniform days as fundraisers. The staff did a Walk for Parkinson’s in 2019.

One little boy gave up chocolate for a year to raise money for the charity. It really touched me. These events link the school to Parkinson’s and teach the children that it’s about us all looking after each other.

Jane's story: "We had to do everything possible to keep Leah in school"

Leah and I have worked at the school for an unbelievable, but happy, 20 years. I remember the day Leah told me about her diagnosis like it was yesterday.

At this point Leah and I had no experience of Parkinson’s and no information. But we were quick to get to know what to expect. We knew we had to do everything possible to keep Leah in school.

She’s a very experienced teaching assistant with lots of skills. Both the children and staff love her.

Making changes

We contacted occupational health who were more than happy with the things we were doing in school to make sure Leah’s role wasn’t too much for her. I made sure Leah was working with a year group that didn’t need her to sit on low chairs or work at low levels.

I also make sure Leah doesn’t do anything unnecessary for her role. When Leah began showing signs of tiredness at the end of the day we reduced her hours to working mornings only. Even then she would arrive at 7.30am raring to go!

Honesty is key

We’re honest with each other, and I think this is key. She tells me when she isn’t feeling good and I tell her when I think she should go home! She’ll also tell me when she is feeling good and we celebrate this too.

We’ve embraced Parkinson’s as a school in support of Leah. We do anything we can to raise money for Parkinson’s UK. 

Leah's Parkinson's legacy

Parkinson’s became something that we could laugh at and cry about. This helps us all work with it, from helping Leah do her hair before the school day, to closing my door so she can have a good cry. 

There were times when she’d say she had to stop working. But after a chat she’d realise that working at school was what got her up in the morning. The children and staff helped her to carry on when she felt like giving up. Those times were soon forgotten! 

Leah has incredibly supportive family and friends. And I can safely say she has equal support at our school. She’s a valuable team member and I know that Leah’s legacy here will never be forgotten, least of all by me.