“I came home, spoke to my wife, and we cried together”
Author: Roisin McCormackPublished: 18 October 2018
Prep: Cook: Serves:
Dean Cook, co-facilitator of The Hagerstown Parkinson’s Support Group, Maryland, US, discusses how he keeps his mind stimulated – from writing limericks to finding “an escape in fiction” – and how the support group has become a huge part of his life
When were you first diagnosed with Parkinson’s?
I’m 68 years old and I was diagnosed with Parkinson’s about 10 years ago.
When I retired, I tried to find a definitive answer to a problem I was having. I had weakness in my right arm and right leg, I was slurring my speech and I couldn’t write very well. I asked for an appointment at the hospital. Of course, there is no simple blood test for Parkinson’s. I had to have a physical exam and I was diagnosed with the condition.
How did you feel when you were diagnosed?
I came home, spoke to my wife, and we cried together. We did a lot of research to find out everything we could about Parkinson’s and I called my local support group in Hagerstown and asked to join. I wanted to speak to other people in a similar situation. My wife and I started going to the meetings, we became involved and now I’m the co-facilitator of the group.
What does The Hagerstown Parkinson’s Support Group do?
We have meetings the first Thursday of every month and we attract some of the best speakers on the subject in the area. We have around 50 to 60 people attend, half of whom have Parkinson’s and half of whom are carers. It’s a great organisation.
You’re also the local ambassador for the Maryland Association for Parkinson Support. How did you get involved in that?
The Maryland Association for Parkinson Support decided to recruit ambassadors to talk to people in the community about the condition. I was selected for my area. We talk to homeowners’ associations, church groups, neighbours – whoever we can reach out to. As we know, Parkinson’s can cause mobility issues – so a lot of people can’t come to the meetings or do clinical trials – and sometimes they just need to talk to somebody.
When did you start writing poetry?
I’ve been doing it for a long time – I mainly do limericks. We Parkinson’s folks have trouble sleeping, so sometimes I wake up in the middle night and – just to keep the mind active – I’ll put together some rhymes and limericks.
One night I got to thinking about how we read so much and hear so much about the progress made in Parkinson’s, but we don’t actually see anything being done. We know it’s happening behind the scenes, we know that as we speak there are great people working on it – but it’s still frustrating. That inspired me to write ‘The Parkinson’s Blues’. You can see the satire in there – it’s meant to be a bit tongue in cheek.
Are there any particular poets that you love or look to for inspiration?
One of my favourite poets is Robert Frost, and I love the Scottish author Alexander McCall Smith. I’m an avid reader – my wife is a TV watcher but I’m a reader because I think it keeps the mind more active. I only read fiction because it’s an escape, and we all want to escape a little bit.
Would you advise other people with Parkinson’s to take up writing or another creative outlet?
Yes, I really think people should keep the mind active. Reading is so important. TV can be a challenging thing to do but there’s nothing like reading a good book. I also enjoy doing The New York Times crossword puzzle – although it takes me about a week to complete it.
Sometimes it can be difficult for people with Parkinson’s to even pick up a pen, or use a keyboard – but keeping the mind active is extremely important. We’re running against a clock – we need to squeeze out as many good days as we can.
Have you written any other poems about Parkinson’s?
I wrote one sometime back called ‘I’m Where I Need to Be’. It’s about our support group and the people who show up every month, sitting in “the same old places”. It’s an important part of their social lives. They just wouldn’t miss a meeting, and that’s why support groups are so important. It’s a real work of love.
Dean (far left) with members of The Hagerstown Parkinson’s Support Group.
The Parkinson’s Blues byDean Cook
Don’t know about you but I’m a little weary
Of hearing the “progress” made with this disease.
Seems all the experts have a different theory;
I want to shout out loud, “Just stop it, please!”
We’re moving right along, I hear them say:
A “new and improved” treatment is in place.
It’s just a matter of time, they said today,
Before my legs regain their natural grace.
They’ve found a way to bring my memory back.
Some strands of cells had simply come untied.
They opened the nucleus membrane just a crack
And placed a tiny cross where some had died.
That drooling while I sleep is in the past.
My likelihood of falling is now gone.
From this day on, I’ll start to move real fast.
My letters will look written and not drawn.
The problems I have dealt with up ’til now,
Caused by a folded protein it is said,
Will no longer be an issue anyhow.
They were simply doing sit-ups in my head.
It seems they’re making progress every day.
There’s going to be a party at the end.
And at that celebration they will say,
“Too bad you were unable to attend.”
For more information on creative therapies and Parkinson’s please visit the EPDA website.
New insights on immune cell process and Parkinson’s disease
Insoluble clumps of the protein alpha-synuclein, which can cause damage to brain cells, have been previously linked to Parkinson’s. Now, scientists in Germany, France and the US have uncovered new details on how brain cells respond to these clusters. The researchers discovered that the brain’s immune cells may be able to join together to break down the protein clumps. According to a press release, this was previously unknown. They also found that these neighbouring cells share mitochondria – structures that generate energy for chemical reactions – to help one another. In certain mutations associated with Parkinson’s, this process may be impaired. The researchers hope this insight could inform the development of new therapies. “We have opened the door to a field that will certainly engage researchers for many years to come,” said Professor Dr Michael Heneka, director of the Department of Neurodegenerative Diseases and Geriatric Psychiatry at the University Hospital…
Could analysing skin oil help diagnose Parkinson’s disease?
Parkinson’s disease patients tend to have high levels of oil, known as sebum, on their skin’s surface. Now, a study has suggested that analysing this substance may help when diagnosing the condition. The study revealed that sebum contains significant amounts of genetic material, specifically the molecule ribonucleic acid (RNA). Analysis of RNA contained in sebum – that is, skin surface lipids RNA, or SSL-RNA – could offer insights into a person’s health. Researchers in Japan examined SSL-RNA in men and women with and without Parkinson’s. The results suggested that the SSL-RNA profiles of those with Parkinson’s had “different characteristics” than those without. The researchers then tested whether examining these profiles with machine learning could reveal those who had Parkinson’s – and who didn’t. The team’s algorithm indicated a “relatively robust discriminatory ability,” supporting the further use of SSL-RNA as part of a future “non-invasive” method for diagnosis.
‘Sonic hedgehog’ protein could impact Parkinson’s disease dyskinesia
Dyskinesia is often caused by extended use of the common Parkinson’s medication levodopa – and can be debilitating for those with the condition. Now, researchers in the US may have found a way to suppress these involuntary movements through a protein called ‘sonic hedgehog’. To conduct their study, the team administered levodopa and sonic hedgehog agonists to rodent and non-human primate models of the condition. The results revealed that dopamine neurons use the protein to communicate with other neurons thought to play a role in levodopa-induced dyskinesia. Increased signalling of sonic hedgehog pathways was found to reduce this dyskinesia – providing “novel insight” into its formation and a “potential therapeutic solution”. “What we find,” wrote corresponding study author Professor Andreas Kottmann, “is that in several animal models, by replacing … dopamine together with agonists that mimic the effects of sonic hedgehog, these dyskinesias can be very much suppressed.”