Shafaq Ali discusses her ‘destabilising’ diagnosis, including how her life has changed, how it impacts her job and how dental professionals can support people living with Parkinson’s in practice.
Please introduce yourself and tell us how you first got into dentistry.
My name is Shafaq, I come from a very medical and dental family so coming into dentistry seemed like a natural thing for me.
I was never going to be an office-based worker – I knew that wasn’t going to be something I could do. I’m very much a people-person and I worked with my hands a lot – I did a lot of art. So, it made sense for me to naturally go into dentistry.
I wanted to be in the health care profession, so I became a dental student in 1997 at King’s College.
When you first got your diagnosis, what were your first thoughts and how did you think it would impact your life?
I first got my diagnosis in July 2019, so I’d been a dentist for a long while by then.
It was very shocking. No one in my family had actually had Parkinson’s, and I certainly wasn’t aware that people could get it as young as 39, 40, which is how old I was when I first got the diagnosis.
It was really destabilising and I thought: ‘Of all the things to get as a dentist, how am I going to carry on dentistry? How am I going to be able to carry on practising?’
Obviously, you worry about income and all sorts of things. It was very shocking, very destabilising initially.
‘I just carried on’
I got my diagnosis in July 2019 and then Covid-19 happened towards the latter end the year and in early 2020. My neurologist said to me that it’s probably better – with all this Covid-19 stuff going on and not knowing how it reacts with Parkinson’s – that I have a bit of time out.
So having that little bit of time out really helped me digest everything and I started taking medication and got into a good exercise routine.
I realised that there’s nothing different between me now and what there was before the diagnosis. Only now I know why I have a bit of a tremor sometimes, or why I feel a bit more anxious than I used to sometimes.
So once I got my mind around it, it was fine and I just carried on. But the initial diagnosis took the rug out from beneath my feet completely.
What sort of support did you have at that time that helped you get through it?
I did a lot of Kung Fu. I still do Kung Fu, which is brilliant. It’s a really family friendly group that I go to on a Tuesday evening. And it’s run by another dentist actually. It’s really friendly, really nice.
I also love swimming, but I couldn’t do that much during lockdown.
And obviously the ultimate lockdown activity: walking. So I got a lot of walks in and it was beautiful weather that year despite everything else that was going on. I spent a lot of time outdoors.
I do something called Nordic walking as well which is very good. It’s like walking using these poles and I do that every Thursday. It’s very good for Parkinson’s and other neurological conditions.
How does it affect your day-to-day life now?
My day-to-day life now obviously is affected in a few ways.
It does sometimes affect my sleep – it can give you quite vivid and funny dreams. So sometimes my quality of sleep is affected and that can affect how I work on a daily basis.
I have had to reduce my working hours just to accommodate a few things. One, the exercise which is essential to slowing down progression of Parkinson’s, and two, to allow me to recover from any nights where I do have insomnia, which is really common with people living with Parkinson’s.
Then here’s also medication – I have to remember to take this medication. I’m the sort of girl who never even popped a Nurofen or Paracetamols much. So suddenly having to remember to take these levodopa tablets every day and at a certain time, that’s quite being quite difficult to get used to.
But then my body reminds me when I haven’t taken it because the main symptom I have is an achy right shoulder. And if I haven’t taken a medication that comes on again quite prominently. So my body reminds me to take it.
‘I’ve had to learn to take things a bit easier’
And then there’s the changes I have had to make to daily life as well, like incorporating the extra exercise, like learning to take it a bit easier. I’m a kind of a full pelt person and I’ve had to learn to take things a bit easier.
I love dentistry. It’s really quite sad maybe how much I love my job. But I do actually really enjoy working in NHS dentistry, and dentistry full stop actually.
So, I’m learning to work sideways. I started taking up a different role as a trustee at the Benevolent Fund. I also work in a food bank and work with Dentaid. So, if I’m not doing clinical dentistry, I’m still doing things which I find rewarding and enjoyable.
Is Parkinson something that you think the dental profession needs to be more aware of? What do dental professionals need to know about Parkinson’s so that they can support colleagues and patients?
So first of all, let’s talk about colleagues that have might have Parkinson’s. I’m absolutely sure there must be more dentists out there who have Parkinson’s at the moment or will be diagnosed with it in the future because it is a very prevalent condition and it’s on the increase. I think one in 37 people will be diagnosed with it during their lifetime in the UK. That’s a lot.
And it’s important for colleagues who have conditions like Parkinson’s to understand that it’s not the end of the world. It does feel like it at the beginning, you do lose your confidence at the beginning completely. But it doesn’t automatically go from 100 to 0, it gradually declines. And that happens with people anyway. Parkinson’s for me I feel like is just a slightly accelerated ageing.
So just tailor your work and your day. I try and keep bigger cases, dentally, to earlier in the day. So crown preps and things like that I’ll do earlier in the day when I’m feeling better in myself and I’ll do more check-ups towards the end of the day.
I always have colleagues on hand as well so that I can always check with them. The only thing I sometimes don’t like to do anymore is suturing. So if I feel like there’s an oral surgery case which will need suturing, I’ll refer it to a colleague rather than do it myself.
‘Know your limitations’
I think the important thing is to know your limitations. Work within them and keep working where you can. Don’t be scared of a diagnosis like Parkinson’s. It happens and it’s going to be happening more and more frequently and dentists will be affected.
The best things colleagues can do is not look at you like you’re now some sort of alien – which my colleagues haven’t, fortunately – and just be really supportive and just carry on treating you like the person that you are, you still are. My colleagues have been fantastic where I am, so I’m really, really lucky.
And as patients, there’s a heck of a lot we can do so. There’s the perceived difficulty a patient has in coming to see the dentist, which is that they might have a phobia – which most of the population has anyway.
But apart from that, they might worry about things like if they have a tremor or access and how that will affect their treatment. So patients need to be encouraged to come, facilities need to be made available, ground floor surgeries etc.
The other thing that needs to be put in place for patients with Parkinson’s is the preventative programmes because, if someone is diagnosed at my age, they’re going to have very few problems. hopefully anyway, but they need to implement things.
‘Go heavy on preventative advice’
So, if you’re going to have reducing manual dexterity, you need to be using an electric toothbrush from a younger age as soon as you know. You need to be implementing fluoride toothpaste and interdental cleaning with a water flosser rather than floss or TP brushes.
Even if manual dexterity is good, like someone at my age, by the end of the day one is tired. Then it’s just easier to use these devices rather than having to do it oneself.
With Parkinson’s patients, I would definitely recommend dentists go heavy on the preventative advice and seeing them perhaps more regularly. Perhaps every three months rather than every six months. And if we can catch problems earlier on with patients, it’s far better than waiting for later on, which is when a lot of patients do end up getting seen instead.
We need to encourage these patients to come. We need to encourage them to carry out a good preventative regime and do treatment when the disease is in its early stages so that the dentition is stable going on into the later stages.
Also, be aware of the problems that can occur. For example, TMJ dysfunction can be quite a big problem because a lot of patients will brux, grind their teeth. Then there’ll be others that will have xerostomia, dry mouth, because of the medication that they might be taking, like anticholinergics. Others will be drooling, so you get angular colitis.
A general knowledge of the conditions that can occur with Parkinson’s disease would be really good. Working on that preventative regime is really important.
Is there anything else you wanted to add?
Chronic illnesses and chronic conditions are going to be on the increase and we all need to be there to support each other and not be scared of these things. Don’t delay going for diagnosis if you’re worried about something .
There’s nothing worse than not knowing. So to colleagues out there who are concerned about things, go and get yourself looked at and get a diagnosis.
To colleagues who have friends who are going through something, encourage them and support them. And to colleagues who have patients with conditions like that, don’t be scared of Parkinson’s. Don’t be scared of other chronic conditions.
There’s ways of treating them and ways of working around it. There is a lot more to do with regards to patient and dentist education and I hope we’ll move further in that field as time progresses.
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