World Parkinson Congress 2019 Bloggers: Kirk Hall

In the sixth in our series of profiles of the bloggers supporting the World Parkinson Congress 2019, we talk to US blogger Kirk Hall about palliative care for Parkinson’s and the Tremble Clefs singing programme

Can you describe yourself in one sentence?

I’m a hobbit-wannabe Grampa with a rapier intellect, wry sense of humour, overactive imagination and a mild cognitive impairment.

Do you have a particular audience in mind when you’re writing your blog?

Well I guess from the above description you may suspect that my target audience are people on drugs! In reality – a place I visit very periodically – it is people living with Parkinson’s, care partners, their friends and anyone else who has an interest in the condition.

Is there an aspect of Parkinson’s that you’re most passionate about?

Yes, palliative care and the therapeutic singing programme Tremble Clefs. I’ve had the opportunity to participate in the development of Parkinson’s palliative care by working with a group led by healthcare professionals Dr. Benzi Kluger and Dr. Janis Miyasaki.

I also lead a patient/care partner advisory council that has participated in clinical research studies to determine if  palliative care clinics offer a benefit compared to standard treatment.

Tremble Clefs is a programme I work with that aims to help people with their voices and improve their quality of life.

How widely read is your blog and in which countries?

It has currently been read in over 70 different countries since its inception in 2011.

Have you been surprised by the global audience you’ve attracted?

Definitely. From the start I have always aimed to write about things that are of interest to myself, or that I thought could motivate and inspire others. There’s a wide range of stuff on my blog, from straight news stories to personal insights. It has been interesting to see the response to the various articles.

Which of your posts have attracted the most interest from your readers?

An open letter to Linda Ronstadt and Neil Diamond.

Which has been the most controversial?

I made a choice not to avoid difficult subjects like dementia or death in my blogs and books. I have written an article about when to engage hospice services, and although I wouldn’t personally call it “controversial”, I can see that some people may find the topic difficult to discuss.

Talk us through your routine: when do you find time to blog?

That’s a tough one, to be honest I have found it increasingly difficult in the last year to write articles that seem worthwhile. I am simply not able to churn them out as easily as I used to. The articles I do write often relate to personal experiences that I have thought about over a number of years.

I used to do the majority of my writing in the morning or even the middle of the night when an idea would occur to me. If I thought it was good enough, I would get out of bed and capture the idea in enough detail so that I could pick up on it in the light of day.

What physical challenges do you face when writing?

I’ve got a tremor in my right hand which causes me to make a lot of mistakes, so writing can be quite tedious. However, cognitive challenges are a much bigger problem for me.

What do you hope people will take away from reading your blog?

I hope that some of what I write can be of interest to, inspire or motivate members of Parkinson’s community.

How did you get involved with the World Parkinson Congress?

I was contacted due to interest in my blog and spoke to the organisers of the event.

Can you share any moments from the last conference in Portland, US?

Absolutely. I had the honour of making a “patient-centred” presentation regarding my work with Parkinson’s palliative care.

What are you most looking forward to at the World Parkinson Congress 2019?

I spent a good deal of time in Japan during the eighties meeting with consumer electronic manufacturers.  We often made stops in Kyoto on the way to Osaka from Tokyo.

Most of all, if I do attend, it will be great to see friends from around the world and help promote Parkinson’s palliative care and the Tremble Clefs.

Read more: World Parkinson Congress 2019 Bloggers: Mariëtte Robijn

World Parkinson Congress 2019 Bloggers: Tim Hague