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parkinsonsperu

Starting the Parkinson’s Association in Arequipa

Speaking at a Lima event of the Parkinson’s Association

The process of starting the Parkinson’s association in my city is taking time. That is the way life is here in Peru as there is always paperwork and permissions and more paperwork to be done. But because of this delay I organised a more intimate meeting with a handful of people that I know to see if I could build up the trust between us. 

Edith (name changed) is a retired teacher who I have heard speak various times and always admired as she is so interactive and creative in the way she presents. I invited a group of pastor’s wives to my home, including Edith,  for a time to encourage one another and before long she mentioned she too has Parkinson’s disease. She didn’t know that exercise helps slow the advance of the disease. It was a surprise, but it shouldn’t be as my research shows that people with Parkinson’s (PWP) in Peru don’t have a clear understanding of how exercise rebuilds the nerve connections again and practice and movement help with coordination and walking.  To make a long story short it is exciting as Edith helped me host the first Parkinson’s association meeting in my home. Her talk were real blessing to others.

Another member is a lawyer Pablo (name changed) whose wife I know through my current circle. He is very capable in helping me with the paperwork for the association and also helping set it up legally.  His story is that he had been told he ‘shouldn’t dance or exert himself too much’. He actually struggled with this advice as he loved dancing but had to give it up. But scientific studies say the exact opposite. Dancing is an excellent form of exercise as the music helps move people too. Scientific studies say that while stretching is good but one needs to also get out of breath,  – which in Spanish is ‘agitarse’ – like agitate yourself a little. Dancing is great for Parkinson’s but so are running, walking, boxing, yoga and many other forms of exercise. They help with movement and prevent rapid disease progression. Exercise also helps with depression, and social interaction with exercise is great too. 

But this man has had the disease over 10 years, still works full time, and is now accustomed to inactivity. I have heard it said that people with Parkinson’s are resistant to exercise. This sounds strange but depression and apathy are also common and affect motivation. 

So pray for this new friend who wants to help with the association that he’ll have the time and energy to help and that also he can find the motivation to get exercising. I believe he can do it… he just doesn’t know it yet. His wife told me how amazingly smart he is and I don’t doubt it but sadly sometimes Parkinson’s affects so many parts of one’s life and this affects one’s confidence. 

It may all just take a little longer than I had planned but we had a lovely time together with just 5 of us in total. I hope we can integrate others soon. 

Visiting Parkinson’s Geneticist – Dr Nacho Mata

You might have seen me walking around WPC with a Peruvian beanie (warm) hat on. There was reason to my madness: I was trying to connect with people from South America but  there were very few of them. But then I heard about the legendary “Nacho Mata” – But I couldn’t find Nacho despite messaging him, so on went the hat and he spotted me easily leaving a session. 

Dr Mata had a huge interest in Peru, where I live, as his work is in genetic studies various countries in South America. He has found that Latinos have very little representation in the genetic studies done already so if cures or treatment was found it would be likely to benefit mainly European forms of Parkinson’s and not others. Nacho, originally from Spain,  he decided to study the South American variant of parkinson.

When we met at the WPC conference I asked if he could speak with the Peruvian Parkinson’s Association about Genetics (but basic level only). He willingly agreed and the association booked a hall and organised the event within just over a months notice. 

This talk was a great “Introduction to Parkinson’s Genetics” which should be repeated at WPC22.  It explained briefly causes and basics Parkinson’s and even used a Peruvian food analogy to keep them listening. Everyone should know to complement a Peruvian it is best to say “I love _____ (specific food). Smart! He had them hungry for more (pun intended). 

Only 20% of persons have a hereditary form of Parkinson’s and he encouraged PWP to enroll in genetic studies.  Association should also raise funds for research too, as that is how Nacho got his start in Parkinson’s research – the location Parkinson’s Association where he lived gave him a scholarship to do Parkinson’s research. He talks as if they’re his aunts and uncles and is so grateful to them. 

So thank-you to the World Parkinson’s Congress for making the connection possible. Interestingly enough through Nachos visit I have met several young neurologists who are passionate about helping patients. One even stopped me in the hall at a medical conference Nacho was teaching at and said “thanked you for coming and inspiring me to keep working in this area” as I’d shared briefly what it was like for People With Parkinson’s (PWP) in Peru. And how do I know ? I know because I interviewed 28 people so I could present a poster on the topic at WPC2019. Thanks for inspiring me to take their story to the world. 

I also had one young neurologist ask what was needed in Parkinson’s research. I pointed him to the patients ideas that came from WPC poster. I don’t know if he’ll do that topic but he’s more aware now and he wants to help organise a Parkinson’s conference next year for health professions and patients. Anyone else want to come and help us? I’ll take you out for same great Peruvian dish like “Lomo Saltado”. 

Lastly I met very innovative and well read twin doctors – One is a neurologist and the other is finishing rehabilitation speciality and they want to start a parkinson’s Centre in Lima. Yes! They’ve a huge heart to see things done well in Peru and I hope I can partner with them to meet their dream. 

These 3 doctors have confirmed that together we are coming to WPC2022 – Go team Peru!  From 1 in 2019 to 4 at a minimum in 2022. 

Thank-you Nacho for giving up your time to share your knowledge in Peru.