Welcome to my blog those who are new. It is nice to have you journeying with me. I hope you enjoy or learn something here.
This is a newsletter I wrote recently in Spanish. I won’t translate it all but basically I am promoting everything that is happening in Actívate, the Parkinson’s group I created. Well, not much has happened because of Lockdown but nonetheless little things should be celebrated.
I studied community development and one thing you learn is you need to share the successes and promote your group in an ongoing way. It is nice for the participants to get mentioned and of course upcoming events and opportunities for their involvement in research are advertised.
I have included also for the Spanish speakers. If you have questions I can answer them and gradually I will tell these stories too in English.
The raw grief of diagnosis slowly has ebbed away, but living on, it visits from time to time, but never to stay. But strangely there is joy that’s hard to explain. not joy in trouble walking, not joy in aches and pains, not joy in insomnia, I try not to complain But there is joy in working hard despite my fears There is joy in achieving goals though it takes years There is joy in comforting others and in empathy There is joy in sense of purpose and pure clarity There is joy in fighting for others who don’t know how. There is joy in others helping, I’m not alone now Today whatever raw emotions catch me unaware, I know the best is joy and I willingly will share
Well I had big plans for this fundraiser: I was going to climb a mountain but COVID19 means that after 6 months we’re still on lockdown in Peru. We are only supposed to go out for shopping. So no mountain climbing. So plan B….. but first what am I fundrasing for.
Going to World Parkisnon Congress last year CHANGED MY LIFE!
I have made a short video about it on facebook: https://www.facebook.com/591502886/videos/10157825732897887/?extid=Zl9ANwhhjbO7NBGQ
It empowered me to reach out to help the Parkinson’s community in Peru. I’ve started a Parkinson’s association in my city and I’m educating my community about Parkinson’s, drawing on what I learned the World Parkinson’s Congress. I’d like to see others with Parkisnon’s to also be empowered to help their community here in South America and beyond. I’d probably not be doing what I am doing without the inspiring experience of being a part of the World Parkinson’s Congress.
As you can imagine getting to go to such an international event is expensive, so we are raising funds travel grants to subsidize those in need. The congress is in June 2022 and this time it is unique because it will be in Barcelona in Spain. This is super exciting for Latino’s because it means that it will be translated or presented in Spanish as well as English. This means it is the perfect opportunity to get Peruvians and other Spanish speakers along and empowered to come back and lead their communities.
My aim is to raise $2,000 before my birthday on the 28th August
Thank-you in advance for your generosity. Every little bit counts.
No mountain climbing so what am I doing? What is plan B?
A 10-day physical challenge. I will be exercising everyday sharing a video daily via facebook. I’m a little behind in posting as I had a problem I’m trying to sort out with facebook. My next blog will explain the glitch but I’ll post the first video today.
I am having a fundraising for my birthday (28th of August) which is usally done through facebook fundraising but they won’t allow me to use their system because I live in Peru.
I wrote to Mark Zuckerberg an email similar to this:
I signed up in January to raise funds WPC for YOPD. The money goes directly to the World Parkisnon Congress (not to me) though it must be set up from my personal facebook account.
IT SEEMS STRANGE that I am not allowed to raise funds with facebook fundraising for my favourite charity? I went to the WPC facebook page and I can’t even donate? This fundraiser is for my birthday on August 28th. I’ll be 44.
If it was money just for a personal cause I’d understand but this fundraiser is part of a legitimate charity and you can find my profile has been on the website since January. https://wpc2022.org/page/wpc4yopd
I don’t get any money from the fundraising. I just want to help others get along as the World Parkinson’s Congress changed my life for the better.
I made a video about my story of combating parkinson’s by using gymnastics – it was one of the 12 finalists for the video competition. I have kept going ever since and now reach out to my community to help others by running classes and setting up an association.
I am already going to the WPC so this is to raise funds for others – especially my friends who can’t afford to go but I know they would benefit a lot.
Many of you have read about my struggle to get my drivers license in Peru and I haven’t updated you on the follow up.
The first observation was that the 2nd or 3rd time I drove the car an incident happened that woke me up to the realities of the roads in Peru.
I was driving along a main road which had a side line that merged into my line. I saw a bus coming quickly and I let it in and continued. Before I knew it I heard honking and turned to see a male driver in car looking rather annoyed at me from the merge lane. He was about even with my back seat window and he was asking (not so politely) why I didn’t let him in.
I was stunned. I kept moving knowing he couldn’t get around me as I was ahead and I had the right of way as I was on the main road. He proceeded to drive around me and yell at me from the other side as we drove along. Such lack of knowledge of road rules surprised me. I realised that we were in a different world where logic wasn’t aligned with the road rules.
The road rules around the world are basically the same – we looked it up actually. In the drivers test the tester had said you are over the line “you have killed a pedestrian”. I was lined up perfectly with the said line. I got out of the car to check and said “I have been driving for 20 years in my country and I have never hit a pedestrian”. He said the rules are different here. Yup… no they are not! The road rules at least in theory are the same. Practice is another story.
So I learnt the Peruvian way of driving.
1. To get across an intersection you must put the nose of your car in or you’ll never get through and everyone behind you gets very angry.
2. Likewise use your horn at any slowness. That really got on my nerves.
3. You must pull your car within 3 centimeters of the car in front at the lights or someone will stick their car nose between yours and the other.
So driving in Peru was a little stressful but the nail in the coffin was the fact that our radio of the car got stolen from the car at the gymnastics facility twice. We got the car to help us get to gymnastics and school but it was clearly not the safest place to park.
There were a few other issues I won’t go into but driving a manual was hard work in stop-start traffic. So with sadness we decided to sell our little Hyundai. Her number plate was VXY, so I had nicknamed her Vexy from the word vexed and that is what it is like to drive in Peru.
Ironically I have this 10 year licence in Peru and I’m not driving. I’d love a little automatic old car some days (especially as we come out of lockdown) but we do fine with Taxi’s usually. I haven’t been in a car for 109 days as we live close enough to walk to many shops so the need is minimal.
It is far less stressful and though driving yourself might be cheaper, when you count the robbery costs and stress… I think we are better off.
Do I regret anything? No … I understand a lot more about corruption and feel like “walking a mile in Peruvian shoes” was good for me.
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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.
Cuando me diagnosticaron con la enfermedad de Parkinson aquí en Perú hace 6 años, tuve problemas para encontrar expertos en parkinson, información para educarme y encontrar otras personas con quienes poder asociarme, intercanbiar información y así no estar sola.’
Es muy importante no sentirnos aislados, esa es la razón número uno por la que las personas con parkinsons empeoran.
Por eso después de años buscando todo tipo de información, tengo algunos contactos de confianza y quiero compartir con ustedes, tristemente he escuchado historias de gente que se aprovechan de las personas con parkinson, ofreciendo tratamientos que realmente no sirven y muy por el contrario solo los empeoran.
Por eso las recomendaciones aquí tienen que venir de personas de confianza. Es importante resaltar que está página no tiene fines comerciales, no vendemos productos. Lo que buscamos es promover un espacio donde podamos compartir información útil, y de confianza para todos los pacientes y familiares con Parkinson, un espacio para no sentirnos solos.
Directorio de Parkinson en Perú – Eso sería profesionales de Parkinsons quienes están o estén preparándose para ser especialistas de Parkinson. No solo es doctores – puede ser: Dietéticas, logopeda, fisioteraputa, y asociaciónes de Parkinson en varios lugares del Perú.
Educarse (sobre el Parkinson) – Vamos a dividir enlaces por tema y también incluir Manuales sobre el Parkinson. Todos los recursos serán en español pero a veces son escritos en otro país por eso tengan esto en cuenta que a veces los sistemas de salud son diferentes. Tendremos enlaces para profesionales también para ayudarlos a estudiar.
Noticias – Compartiremos fotos e historias de eventos de Parkinsons en Perú o peruanos afuera del país.
Inscribirse– Estamos animando a todos a inscribirse a nuestra web, para escuchar noticias nuevas y futuros eventos.
Gracias por tomar el tiempo para leer y educarse sobre la enfermedad de Parkinson.
Why this website?
When I was diagnosed with Parkinson’s disease here in Peru 6 years ago, I had trouble finding parkinson’s experts, information to educate myself, and finding other people with whom to associate, exchange information, and to meet with.
It is very important not to feel “isolated”, this can be the number one reason people with parkinsons get worse.
So after years looking for all kinds of information, I have some trustworthy contacts and I want to share with you, sadly I have heard stories of people who take advantage of people with Parkinson’s, offering treatments that really do not work and quite the contrary only the get worse.
So the recommendations here have to come from trusted people. It is important to note that this page is not for commercial purposes, we do not sell products. What we seek is to promote a space where we can share useful and trustworthy information for all Parkinson’s patients and families, a space so that we do not feel alone.
The Menus are:
Parkinson’s Directory in Peru – That would be Parkinsons professionals who are or are preparing to become Parkinson’s specialists. It is not only doctors – it can be: Dietetics, speech therapist, physiotherapist, and Parkinson’s associations in various places in Peru.
Educate Yourself (About Parkinson’s) – Let’s break down links by topic and also include Parkinson’s Manuals. All the resources will be in Spanish but sometimes they are written in another country, so keep this in mind that sometimes the health systems are different. We will have links for professionals also to help them study.
News – We will share photos and stories of Parkinsons events in Peru or Peruvians outside the country.
Register – We are encouraging everyone to register on our website, to hear new news and future events. Thank you for taking the time to read and educate yourself on Parkinson’s disease.
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?