Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals.
Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world. See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:
Parkinson’s Disease is severely disabling in parts of the Spanish speaking world because of late diagnosis and poor treatment. Parkinson’s robs one ability to walk, talk, eat and smile. Some of this suffering is preventable.
Parkinson’s Disease is a growing pandemic with 7-10 million worldwide and it’s prevalence has doubled in the last 25 years and will double again in the next 20 years if we don’t find a fight for change. 2% of people over 60 years of age but in Australia 20% of those diagnosed are under 50. Statistics don’t exist in many Spanish speaking countries. The whole family is affected economically and emotionally.
In the west treatment exists. Parkinson’s disease can still be disabling and painful but in Spanish speaking countries treatment can be substantially lower (each country varies). I’m a founder of an iniative called Alianza IberoAmerican de Parkinson. This initiative is needed because:
Patient’s lack self management and lifestyle and trustworthy disease education would help address – false information (cure scams), social stigmas, dangers of isolation and inactivity and depression that lead to rapid disease advancement.
Many countries don’t have exercise and multidisciplinary programs that help prevent progression and advocacy and awareness raising is needed for this
and more health professionals need training in Parkinson’s disease.
The idea is to provide accessibility to Parkinson’s resources to patients, families, health professionals and associations. In turn we can unite for training opportunities across Iberoamerica (The Americas and other Spanish speaking locations). This will strengthen capacities to prevent disease progression, raise consciousness and educate professionals better in Parkinsons in Spanish and ultimately create advocacy for health service improvement including exercise and other key multidisciplinary programs.
Such an alliance of support has never been done in Spanish. Everyone has been working in silos often reinventing the wheel. With COVID forcing leaders like cofounder Sonia Elizabeth and I online as we cannot hold in-person meetings. The demographic is older and some have struggle to adapt to zoom meetings but our community leaders, health professionals and associations are now online, zooming and doing webinars and we realised that we are closer than we thought and can work together.
Our approach is unique as we’re not rushing to create new resources, we’re bringing together what already exists with the help of the World Parkinson’s Congress, who is collating resources in English. Our work will be to have such a directory in Spanish. International health associations exist for professionals but patient friendly resources will be prioritised.
The Project has grabbed the attention of the target population in the Parkinson’s community. Three big associations are eager for us to share their Spanish resources. Over 10 countries are represented so far including associations, advocates and professionals. We surveyed their thoughts concerning the needs of their group and their commitment to help and resources they have. This has determined our aims.
We are doing education webinars in partnership with others and next is with the Mohammad Ali Parkinson’s Foundation and the Federacion Espanola of Parkinson. The comments we are receiving show the difference we’re making in our target population and the ageement they have to see this succeed.
“Scaling up means expanding, adapting and sustaining successful policies, programs, and projects in different places over time to reach a greater number of people”(Hartmann and Linn, 2008). This exactly the aim of this initiative – Our goal is to increase the quantity, quality and accessibility of resources available concerning Parkinson’s disease in Spanish to improve the quality of lives of people with Parkinsons throughout the Spanish speaking community.
Our strategies for Scaling Social impact include expanding our network of affiliated organisations connected by the shared goals and activities to disseminate a directory of resources, promote courses for professionals, and raise awareness together (online, printable, videos and webinars),
Our business plan focuses on these aims and encourages advocacy for better services and policies concerning Parkinson’s treatment. Ultimately we’d like to evaluate lessons learnt in policy and service initiatives and advocacy to create context specific reviews that could guide further efforts.
Future investment would help:
Currently we have no funding for awareness campaigns, paid staff or a web platform. We have volunteers and willpower. Future investment could create a technological platform, help cover costs of awareness raising and ultimately we’d like to provide leadership training across our partners organisation to build up effective and discerning leaders who can disseminate resources and lead awareness raising campaigns in a latino context.
This is a guest blog I made on a Spanish website – I translated it into English here:
I am Christine Jeyachandran and I was diagnosed with Parkinson’s disease seven years ago, when I was 37 years old. People are surprised that I have Parkinson’s because of my age and also because I am open about it. It was difficult at the beginning . In 2018 I wrote: “Sometimes I feel sad. This disease got me too young, I am only 41 years old. I grieve the loss of what I can’t do. I hope I can be there for my children when I am older and be full of energy and strength.”
But in my journey I have shown that I should not wait for the bad things to happen, but to change my destiny with determination. For me, light exercise was not working. My Parkinson’s symptoms were getting worse, my left hand was shaking and my ability to walk and my arms were affected. Light exercise was not helping me prevent my body from deteriorating further. In 2018 I decided to take classes, 3 times a week of artistic gymnastics, starting 1 hour per week of class and going up to 2 hours.
It was very hard because I couldn’t move much, I was sweating and sweating, my muscles hurt and I was afraid to do some exercises…. But I filmed my experience and my story. My video Handstand for Parkinson’s was a finalist in the World Parkinson’s Congress video competition. I regained my range of motion, balance, flexibility, coordination and I was stronger than ever. It is amazing for me to see the change in my Before and After exercise video.
Now I am an ambassador for the World Parkinson Congress 2022 (WPC), I want to encourage you to go (Barcelona). It is for professionals and people with Parkinson’s and their caregivers. WPC changed my life, because I was able to learn a lot about Parkinson’s and I came back ready to help my community in Peru. I am Australian but I have lived in Peru with my family for 10 years now. I am now passionately helping to educate people with Parkinson’s and encouraging them to do exercises to treat Parkinson’s. I want to finish with a reflection on the attitude of people with Parkinson’s.
I want to end with a reflection on the Parkinson’s attitude I see around me. People with Parkinson’s usually don’t like to go out in the street because there is prejudice against people with disabilities. People hide their disability. Sometimes others want to blame and say it is a curse from God.
If they go to church, sometimes they are told to pray and to have more faith in God for healing. If there is no healing, they don’t want to go to church anymore. On once or twice it was said to me: “You need to pray and have faith”. I agree I need to pray more and have more faith but I want to say it’s nobody’s fault that I (or you) have Parkinson’s.
There are many people in the Bible like Paul, who had great faith and God did not heal him and there are people who suffered: Daniel, Joseph, Naomi, Hannah and Job. I will be the first to admit that I fail more often than I would like to openly admit, but I believe that God is gracious and loving. He sees our hearts. If Jesus died on the cross for my sin, I don’t believe he would punish me (with a disease) unless it is a direct consequence of bad choices, i.e. smoking can cause lung cancer.
In the Bible there is a story about a blind man (John 9: 1-12) and Jesus’ disciples asked, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” Jesus said, “but this happened so that the works of God might be shown in him. As long as it is day, we must do the works of him who sent me.”
Jesus healed the blind man and showed his power. I don’t know why I have Parkinson’s, but I have had the opportunity to meet many with Parkinson’s and connect with them. I can encourage and educate them and that gives me joy and purpose and I can love them in a world where they feel rejected at times. The disease is not good but I know for sure it is not a curse from God because of past actions.
I cannot hide my disability and any question or comment helps educate one more person, one person at a time. I can’t sit at home and hide, I have responsibilities and children, and there are beautiful places to see and mountains to get to the top off. I can’t stop living and enjoying life, even if I am scared sometimes.
I have learned that ‘Courage is not the absence of fear, but the ability to go on in spite of fear’.
Ambassador of the World Parkinson Congress 2022
Blog: English and Spanish https://handstandforparkinsons.com
I was on vacation, relaxing when I met a friendly guy in the same hotel, let’s call him Kevin. He is traveling alone, in his 50’s and my 6th sense told me there was a reason why I should chat with him. But he worked in real estate, no connection there!
But when I told him about my PD association he was full of advice as he had worked in pharmaceuticals previously. He said I should get a social media plan for my organisation. Of course I know that social media is important to get the message out so I nodded politely when he kept pushing this point.
But the next day he went from a different angle, the more members you have the more you can influence. I have about 100 members and maybe contact with 200 nationwide.. not enough to get this on the national agenda, not even enough for the pharmaceutical companies to take me seriously he says. He said if you can get 5000 people then you have power.
The penny dropped.
So we need to use paid advertising in social media to get it beyond PD circles. It turns out Kevin had a deceased parent with Parkinson’s and it was clear he’d never heard of such support groups. Point made.
Activate (my NGO) needs to have a presence that cannot be ignored, so that Parkinson’s treatment and education are actually on the agenda. And so that pharmaceutical companies will come to the party with conference funding, educational resources and doctors etc. Let’s be honest – we’ll always need them, but they need us too and if we group together, just maybe we can influence them for the better.
I asked Kevin to help me draft a letter to send to the pharmaceutical companies which he kindly did but now I’ve got to step back and set up my systems to meet the swell of responses that will come in from my media campaign (create that too) and automated response forms and information sheets etc. Yes, this could take months but April is Parkinson’s awareness month so that could give me a good target.
It is funny how even on vacation the coincidental meetings with people can influence work.
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Usually activities shut down over Christmas/ new year but something in me said “Let’s start this group and keep the momentum going”. So we started in November and continued with meetings in December, January and February and March with Dr Karlos Lizarragas’s visit. It was a busy few months but it turned out to be a good decision because the week after the Doctors visit we all went into lockdown. I was grateful that I got to know the people who came and connect with them over the ‘summer break’. Now we can’t meet and it is day 108 of the lockdown and we’ve got at least a month to go and because many are elderly and at risk it will be some time before we can meet again.
This is a newspaper article that appeared in the CORREO newspaper the week Dr Karlo came. I have attached the link but have included a rough translation as the article in in Spanish. It might be old news but it reminds me to keep sending them messages of hope and encouragement by whatsapp or sms to my people here and since I didn’t translate this is earlier it is still new to most of you. Please note it is a loose translation and sounds a little strange but you can get the gist. 😉
This article is titled: “Those affected by Parkinson’s take on the challenge to to fight against Parkinson’s”
The Activate Association of Parkinson’s is growing and on Tuesday, March 3, they will receive the Arequipa neurologist Karlo Lizárraga Mendoza 03/01/2020 at 12:30
Last December, The Correo (newspaper) spread the encouraging message of Christine Jeyachandran, an evangelical Christian missionary, who manages well her symptoms in her body although it is affected by the disorder of the central nervous system. Three months later, her aim to create the Parkinson’s League – ‘Get Active'(Activate) is paying off with 26 people attended the last meeting. Christine, who has overcome the limitations of the disease through gym sessions, wishes her peers a similar experience. The first step, and perhaps the most difficult, has been to encourage this significant group of people of different ages to come along and not hide at homes. They are now the founding members of Actívate, and the next step will be to involve everyone in physical exercise as therapy.
Limitations. Parkinson is terrible: the physical limitations, the inability to speak loud and clear, tremors, dragging feet, drooling, diminished facial expression, the lack of balance, the frustration of not walking well, all this causes a heavy load of vulnerability that you carry to everywhere” says Christine to describe the diagnosis of parkinson’s. Activate began on November 3 with 5 members supported by two professionals from the Honorio Delgado Espinoza hospital, one of them is the psychologist Rita Ames who has strengthened Christine’s knowledge of group management and emotions of those affected by the disease.
Since then until February, they have met three times and each time the number of members has increased, reaching 26 people who have left isolation and are willing to continue on the path of integrating and growing the League, eager to achieve control of your movements. “Affected people do not have to be embarrassed in our meetings. You don’t have to explain your symptoms to anyone here because we understand each other. The reason for our name, Get active (Activate yourself), is that we want to do gymnastics, but we haven’t started for various reasons, but the first thing is that they came out of hiding, “says the promoter of the organization excitedly. In these sessions, with the help of the psychologist Rita Ames, everyone can share their ideas, some very shy and others less, they tell their stories, tears are not lacking because they finally have people by their side who understand them.
TO THE FAMILY. The meetings are focused on educating people and their families about the disease and about exercises that can help overcome their symptoms to improve their quality of life. Rita Ames indicates that many suffer from depression and apathy but they are explained how the Activate League will work, that is, with their participation. They find it hard to stop focusing on their weaknesses, but little by little they have shown hope in their eyes. One of the participants, Juan, acknowledged that at first he was only interested in reinforcing his depression due to the disease and its symptoms, but now he maintains the hope of engaging in physical exercises as a means of reducing them and thus improving his quality of life.
MUCH FAITH. “Telling PD patients they have a movement disorder and leaving it at that is a self-fulfilling prophecy. It would be better to tell them, “You have a disorder in which the motivation for movement is significantly impaired, along with movement . But by knowing that, and using conscious mental effort, you may be able to override the impairment to a significant degree” says Canadian psychiatrist Norman Doidge, and members of the Activate League have begun to believe it.
Over a 100 people attended the visit of Dr Karlo Lizarraga. He was so genuinely interested to meet people and hear and answer their questions. He is from Arequipa but lives in the US.
More than 60% of the attendees were new contacts for Activate and we now have doubled the number of people with parkinson’s we have with 80 with almost 60 on the whatsapp group and new calls coming in everyday.
I was thankful for all the people with Parkinson’s (PWP), friends and family of Activate who helped out. We also couldn’t have done it without Dr Isabelle Carmago organising a huge auditorium in the hospital. Volunteers did registration, drinks table and brought gifts.
I didn’t want to talk too much so Elizabeth shared beautifully her story. Juan brought tears to my eyes as he shared that he has new hope for the future. Juan kinda took over the show and isn’t that what every leader wants, people empowered to step up and take things on.
Another friend who helped with the projection – at last minute she went out of her way to go and borrow a projector and set it up. Then the video wouldn’t play. So we struggled and finally got it going but without sound. Thankfully my friend Favi who kindly took the photos of the event noticed the problem and corrected the sound and we restarted with sound. What a relief. The video was a new before and after of my experience with gymnastics.
As it was finishing the lady beside me leaned in and said “so exercise helps with Parkinson’s disease”….yes!!!! I reiterated this point again that yes exercise can improve your symptoms and movement and increase your quality of life.
Dr Lizarraga is introducing a form of telecare which should be able to help the Peruvian patients but it is early stages so I won’t try and explain it. Dr Lizarraga is also working on advancing the training of neurologists here so that should people with Parkinson’s.
DR Lizarraga visit and the patient support our group provides is something exciting for the community of Parkinson’s and I hope and pray especially the professional community will be willing to be trained in new methods of managing parkinson’s.
Our next event aims to help train professionals to assess Parkinson’s patients and recommend exercise plans for them with Dr Koni Mejia from LIMA. We’ll be doing this on a practical way with real patients and teaching some exercises that help PWP.
Special thanks to Dr Lizarraga for helping us in effect “launch” Activate in a more prominent way. He has also helped me think through some of the issues and define our aims too. Organising his speaking engagement (with the hospitals help) has turned into a mentoring role, even if by email. Thanks Dr Lizarraga.
ESPAÑOL – Visita del Dr. Karlo Lizarraga a Arequipa
Más de 100 personas asistieron al conversatorio del Dr. Karlo Lizarraga. Estaba tan genuinamente interesado en conocer gente y escuchar y responder sus preguntas. Él es Arequipeño pero vive en los Estados Unidos.
Más del 60% de los asistentes eran nuevos contactos para Activate. Tenemos ahora 80 contactos, y 60 en el grupo de WhatsApp y nuevas llamadas todos los días.
Estaba agradecida por todas las personas con Parkinson (PWP), amigos y familiares de Activate que ayudaron. Tampoco podríamos haberlo hecho sin la Dra. Isabelle Carmago organizando un gran auditorio en el hospital. Los voluntarios se registraron, cuidaba un mesa de bebidas a y trajeron regalos.
No quería hablar demasiado, así que Elizabeth compartió bellamente su historia. Juan trajo lágrimas a mis ojos cuando compartió que tenía una nueva esperanza para el futuro. Juan ayudaba con el programa y esto es lo que todo líder quiere, la gente está capacitada para dar un paso adelante y asumir las cosas.
Otra amiga ayudó con la proyección, en el último momento, ella hizo todo lo posible pedir prestado un proyector y configurarlo, pero el video no se reproducirá, así que luchamos y finalmente lo pusimos en marcha pero sin sonido. Afortunadamente, mi amiga Favi, quien amablemente tomó las fotos del evento, notó el problema, corrigió el sonido y lo reiniciamos. Qué alivio. El video fue un nuevo antes y después de mi experiencia con la gimnasia.
Cuando estaba terminando, la señora a mi lado se inclinó y dijo “así que el ejercicio ayuda con la enfermedad de Parkinson” … ¡sí! Reiteré este punto nuevamente que sí, el ejercicio puede mejorar sus síntomas y movimiento y aumentar su calidad de vida.
El Dr. Lizarraga está introduciendo una forma de teleasistencia que debería ser capaz de ayudar a los pacientes peruanos, pero es una etapa temprana, así que no intentaré explicarlo. El Dr. Lizarraga también está trabajando para avanzar en la formación de neurólogos aquí para las personas con Parkinson.
La visita al DR Lizarraga y el apoyo de los pacientes que nuestro grupo brinda es algo emocionante para la comunidad de Parkinson, espero y oro especialmente para que la comunidad profesional esté dispuesta a recibir capacitación en nuevos métodos para manejar el Parkinson.
Nuestro próximo evento tiene como objetivo ayudar a capacitar a profesionales para evaluar a los pacientes de Parkinson y recomendarles planes de ejercicio con el Dra. Koni Mejía de Lima. Haremos esto de manera práctica con pacientes reales y enseñaremos algunos ejercicios que ayudan a PWP.
Un agradecimiento especial al Dr. Lizarraga por ayudarnos en efecto a lanzar “Actívate – Liga Contra el Parkinson” de una manera más prominente. También el doctor me ayudó a pensar en algunos de los problemas y a definir nuestros objetivos Mientras organizando su compromiso de conversatorio (con la ayuda del hospital), el se a convertido en mentor para mi, incluso por correo electrónico. Gracias Dr. Lizarraga.
Do you notice yourself feeling tense, for example in your shoulders? Does your headache?
Do you feel tired or easily irritated? Does your stomach get upset or do you experience shortness of breath?
While everyone might be a bit different it is important that we notice what stress looks like and notice what happens in our body. Looking for the signals is the first step in dealing with stress. This was one strategy the fabulous psychologist Rita Ames taught us in an interactive talk about dealing with stress and Parkinson’s disease. She got everyone talking, even those who seemed reticent at first.
Looking back these feelings of stress were with me at the January Activate meeting where I felt overwhelmed leading almost everything at the meeting. So I had noted this and delegated a few things and asked for volunteers. I was encouraged to have lots of help and glad to not be stressed during our February meeting.
Rita did the main talk and Elizabeth, another volunteer and gifted communicator, encouraged us spiritually. We had a volunteer bring crackers and water and others helped with registration. This allowed me to be free to organise the meeting while carers could tell their side of the story to our registration helpers. The carers often feel isolated so they appreciated having someone to listen to them and show them love.
The biggest surprise was Juan who I asked to report on our legal status and our plans to create a Non government organization (NGO) so we can receive donations. He shared how he had caught my contagious attitude and was now planning big things for “Activate – Liga Contra el Parkinson”. It’s very encouraging as his plans go way beyond my ideas. He also shared about his life with Parkinson, his struggle with depression and thoughts about how we can help others with this debilitating sickness. It’s exciting to see Juan’s approach changing.
We may need a new venue in the future so please pray for this.
We need to have space for exercise classes too (could be the same place).
Also pray we find a physiotherapist to evaluate people, so we can understand their needs before we start classes and track their progress.
Volunteers for Registration at events
Volunteers to distribute and hang posters to educate the public
Volunteers for administration and translation,
Our next meeting on the 3rd of March is with a Peruvian Doctor who lives in the USA, so we need to get an organising team going very soon.
So thanks again to those who helped me this month. I couldn’t do this alone.
I am still thinking of how to avoid stress. I’m really enjoying the work but the extrovert in me doesn’t want to go it alone.
What can you do when you recognise stress in your life?
I am in the newspaper again to educate society that exercise is so important to improve parkinson’s symptoms and improve quality of life. Estoy en el periódico otra vez. Todo para educar la sociedad sobre la enfermedad de Parkinson: El ejercicio reduce los síntomas y por lo tanto mejora la calidad de vida. Por favor poner comentarios en “Encuentro”. Gracias Link to Newspaper: http://encuentro.pe/deportes/la-gimnasia-artistica-como-terapia-del-parkinson/
That may seem a strange question to use in a Parkinson’s association meeting. But that what I asked is very strategic. These people have parkinson! They have plenty of weaknesses. They are used to people asking them about symptoms and many suffer from depression, anxiety and lack of motivation. It is part of the disease though everyone is affected differently do not everyone has it.
The other reason I use such an approach is because I did a Masters in Community Development which is an aspect of social work and international development which approaches development from a different perspective. The role of the community development worker is to help the people themselves.
One of the key methods is asset-based development. Instead of going in and asking ‘what do you need’ or condescending statements or questions about their situation they look at the strengths they have. Helping people find their strengths means helping them see their worth and see how that could help each other. That is one of my aims with Activate – the Liga of Parkinson’s en Arequipa.
I also wanted to avoid the tearful diagnosis stories this meeting and keep it more positive. Not to say we won’t do these stories but not everytime we meet. Instead we started with singing, actions and dancing to a children’s song with a good latino rhythm. This helped everyone loosen up and have a bit of fun.
Feeling useful and valued brings people joy and my strategy is to get people involved in running the Liga. Let’s be honest it is a lot of work alone so having help will lighten the load too especially as the people get the hang of what is involved. Family of the people with
Parkinson’s are also invited to help out too.
We are hoping to start some sort of exercise classes for those interested so I asked if people could help find a location and teachers and or funding or the user pays. It could take some time.
We also had life size person outline on paper and we had everyone yell their symptoms, and we put up the labels on the body of where they related to. They enjoyed being the experts on the disease as we of people learn about symptoms others have.
We had about 16 people with Parkinson’s plus family. I have 42 contacts with Parkinson’s now and the Doctor just rang to say she has more people wanting to come so we a have penciled in the 11th of February for the next meeting in the same venue to keep things moving.
In all, exciting meeting and we hope and pray the enthusiasm continue.