What a surprise? I was interviewed for a newspaper and today when I found out it was published we rushed to buy it, looked through all of it and started to think it must have been yesterdays paper. No, it was a full backpage. Amazing!
So thankful for the connections I am making to get this far. A person with Parkinson’s introduced me to the journalist and because she already knew of his struggle she was already sold on helping us out and wants to continue to do so.
By chance I ran into the family at the shops just now and was able to say thank you in person. Juan reiterated that Nelly was willing to write more stories. To which I replied “Yes! I am hoping your story will be next as I know you are a going to improve a lot right?” He smiled sheepishly. Let’s hope and pray! He is a great guy with a lovely family.
I have various friends helping with editing and other tasks which helps so much. It takes a village really. Thank you Josue, Ines, Noelia, Leydey, Yoselyn y David, and my kids. Hoping for more helpers soon. Any volunteers
The article is in Spanish but it explains about starting the Parkinson Association in my city, my exercise and the video I made which documents my gymnastics program which was shortlisted for the #wpc19 video competition.
En Español
¿Qué sorpresa? Fui entrevistado para un periódico hoy, cuando descubrí que estaba publicado, nos apresuramos a comprarlo. Lo revisamos todo y comenzamos a pensar que debía haber sido el periodico de ayer. Pero era una página detrás. ¡Increíble!
Estoy muy agradecido por las conexiones que me ayudaron a educar sobre la enfermedad de parkinson. Juan, un amigo con Parkinson, que me presentó al periodista, Nelly. Porque ella ya subia de la enfermedad de Juan, ya estaba convencida de ayudarnos y quiere continuar haciéndolo.
Por casualidad me encontré con Juan y su familia en las tiendas el mismo dia y pude agradecerles en persona. Juan reiteró que Nelly estaba dispuesta a escribir más historias. A lo que respondí: “¡Sí! Espero que tu historia sea la próxima, ya que sé que vas a mejorar mucho, ¿Verdad?” Él sonrió tímidamente. ¡Estoy orando! Son una linda familia.
Tengo varios amigos que ayudan con la edición y otras tareas que ayudan mucho. Realmente se necesita un pueblo. Gracias a Josue, Ines, Noelia, Leydey, Yoselyn, David y mis hijos. Esperando más ayudantes pronto.¿Quienes quiere involucrarse?
Los trabajos sean administrativo, diseño gráfico, buscando aliados en hospitales y lugar para clases etc.
El artículo está en español, pero explica acerca de cómo iniciar la Asociación Parkinson en mi ciudad, mi ejercicio y el video que hice que documenta mi programa de gimnasia que fue seleccionado para la competencia de videos en el congreso mundial de parkinson #wpc19.
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.
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.
In my city people hide the disease but there is a Parkinson’s Association in Lima, so I hopped on a plane to see who I could meet. Well, providence stepped in… before I even got out of Arequipa I met a lady (and her son) whose father had Parkinson’s disease. I was able to chat with her about everything related and she happens to work in health insurance and can use her connections to find patients. She stated as we pulled into Lima “ Next year we’ll celebrate in Arequipa – even better than LIma”.
What a great start to my trip.
World Parkinson’s day is celebrated by people with Parkinson’s Disease and their families all around the world on 11th of April. In Lima there were a hundred people in attendance. There was a special guest, Carlos Alvarez, a comedian whose mother had died from the disease recently. He is helping get media attention and he’s already done that by making a short show about his experience and introducing some people with Parkinson’s and the issues they face.
I also told my story of getting Parkinson’s disease and how important exercise has been for me. I told them about being an unexpected gymnast and I really connected with the audience who smiled or laughed at my jokes. There was even one lady who doesn’t know what rhetorical questions are but that made it fun too. I was able to make many new friends and interviewed about 11 people in person in Lima. The night ended with music and dancing which is a lot of fun. I’m very excited to see the future of the Association and how it’s growing and educating about parkinson’s disease.
To go along with the video I have renamed the blog “Handstand for Parkinson’s” and the website is www.handstandforparkinsons.com. I hope this won’t cause too much confusion.
The other news is that I am preparing a Poster “Living with Parkinson’s in Peru”. So I am super busy trying to interview people with the disease and write up their stories and creating charts. I have never done something like this and with the time limit so close (June). I am a bit overwhelmed and have ideas that I am struggling to put into action.
Thanks everyone for your votes and support with the video “Handstanding for Parkinson’s Disease”. I have been so blessed by comments and with votes. The winner isn’t announced until June, but voting has finished.
We’re preparing for our 3 month visit to Australia late May to August which is exciting too.
The fun news is that I am working on a follow-up video called “Before and After” about how my coordination, movement balance and strength improved by doing gymnastics to combat Parkinson’s. It is half done so watch this space. I am relatively new to video editing so it is taking me time to learn but I’m advancing little by little.
Also I am back at the gym training pretty hard but like pride before the fall my handstand has gone backwards. Firstly my coach prefers that I don’t use a wall for support and secondly I am still frightened and lack consistency in my style. I need to keep practicing! Everyone has these valleys or plateaus but I am working hard. My next video will include some new tricks I am working on… of course I’m not looking like a pro but I’m moving forward nonetheless. April marks the first anniversary of my time in the gym.
This is Sammy photo bombing me. Not related but fun.
Este es el enlace para recaudar fondos para el proyecto (ya borre). Está en fase de desarrollo en este momento. Estoy tratando de encontrar pacientes e invito a reunirme regularmente y buscando socios con los que trabajar, como la asociación de Parkinson de PERU (que está muy interesada en trabajar con nosotros).
El objetivo es encontrar voluntarios internacionales y nacionales y fondos para venir a enseñar / demostrar las mejores prácticas en el tratamiento de la enfermedad de Parkinson, la educación sobre la enfermedad y el ejercicio.
El proyecto también examinará a cada nuevo contacto sobre sus experiencias con Parkinson en PERÚ. A continuación se muestra un borrador del plan del proyecto, pero las cosas dependerán de las encuestas y los recursos disponibles.
Objetivos del proyecto: Educación para la enfermedad de Parkinson en Perú
Parte 1: Educar a profesionales de la salud, fisioterapeuta, patólogo del habla. Las enfermeras y otros profesionales, como trabajadores sociales, nutricionistas, educadores de la salud y más jóvenes / seleccionados sufren o miembros de la familia capaces de ayudar con la educación de otros.
¿Cómo? Invite a extranjeros o expertos locales a capacitar al grupo principal / Capacitación interactiva y práctica / Pruebas / enseñar a un vecino.
Día 1- Enfermedad de Parkinson en profundidad: Dopamina / síntomas / Drogas vs Ejercicio / mitos / cirugía
Día 2- Discurso / Dieta / Depresión / Importancia de las reuniones / Organización /
Planificación de lecciones de planificación y libros de imágenes
Día 3/4 Entrene a los fisioterapeutas / baile u otros en PD warrior u otro programa similar
Parte 2: Día 5/6 – Clínicas en Lima: Enseñe nuevamente 1-4 en forma abreviada.
Días 7/8 (después del domingo) Trujillo regional y Arequipa – 4 capacitadores (incluyendo fisio / habla / nutricionista) van a cada ciudad.
Es un borrador del plan, pero como la gente me lo ha pedido, me parece bueno compartirlo. Del mismo modo, si deseamos ayuda, necesitamos compartir un plan claro, incluso si es necesario ajustarlo.
Si conoces a alguien que pueda ayudar, los expertos de Parkinson pueden compartir. Que puedan ofrecerse a ser voluntarios o hacer incluso más que en el plan. DREAM soñar grande … y trabajar duro en el interum.
This is the link to to project fundraiser (no deleted as it was old). It is in development stage right now. I am trying to find patients and invite to meet regularly and looking for partners to work with too like the Parkinson’s association of PERU (who are super keen to work with us).
The aim is to find international and national volunteers and funding to come and teach/ demonstrate best practices in Parkinson’s disease treatment, disease education and exercise.
The project will also survey each new contact on their experiences with Parkinson’s in PERU. Below is a draft of the project plan but things will depend on survey’s and resources available.
Project Aims: Education for the disease of Parkinson’s in Peru
Part 1: Educate health professionals, physiotherapist, speech pathologist. Nurses and other professionals, like social workers, nutritionist, health Educators and younger/ selected suffers or family member able to help with education of others.
How? Invite foreigners or local experts to train the core group/ Interactive and practical training/ Quizzes/ teach a neighbour.
Day 1- Parkinson’s Disease in-depth : Dopamine/symptoms/Drugs vs Exercise/ myths/surgery
Day 2- Speech/ Diet/Depression/Importance of meetings/ Organisation /
Planning lesson planning and picture books
Day 3/4 Train physiotherapists / dance or others in PD warrior or other such program
Part 2: Day 5/6 – Lima Clinics: Teach 1-4 again in abbreviated form.
Days 7/8 (after Sunday off) Regional Trujillo and Arequipa – 4 trainers (including physio/speech/nutritionist) go to each city.
It is a draft plan but since people have asked I thought it good to share. Likewise if we want help we need to share a clear plan, even if it needs adjusting.
If you know anyone who could help – Parkinson’s experts then please share. Maybe they can offer to volunteer or do more than in the plan even. Lets DREAM big…..and work hard in the interim.
UPDATE; WE STILL HAVE THESE AIMS TO EDUCATE AND HAVE CONFERENCES BUT WE’RE DOING IT ON A SMALLER SCALE AND ON PAUSE BECAUSE OF CORONA
Everyone is asking: Yes I am back at the gym training with my coach, trying crazy things. M y daughter, Amelia, has pointed out I am doing this wrong and how to fix it. Little by little.
Anything in addition to the target goes towards an educational campaign for patients, families and interested health professionals. Today I met with a Parkinson’s sufferer who has lost faith in doctores, who don’t give patients enough time to educate them properly, explain repercussions of drugs (like laxatives) nor the importance of nutrition, exercise, exercises for the voice, self care and the prevalence of depression and how to confront the disease. Looking back maybe I got more time, being the gringa because I was firing question after question despite noticing the doctores desire to say “next” written all over his/her face. But even then the responses were simple ” yes physiotherapy could help”. I am working one on one to educate but more is needed. I know I have been an encouragement but thinking of a team of people educated in Parkinson’s to deal with this nasty disease properly. People able to model love and kindness and willing to go to the regional centres too.
According to the World Health Organisation 7 million people around the world have Parkinson’s disease. In Peru there are no official statistics but it is it is estimated that 30,000 people suffer with Parkinson’s and every year 2000-3000 new cases are found.
But from observation and comments of friends here, people hide disabilities or they can be undiagnosed so the numbers could be higher.
The treatment and lack of education about the disease is concerning.
Diagnosis of Parkinson’s disease in Peru is usually done by a neurologist but outside of the capital there are no Parkinson’s specialist neurologists (registered as Movement specialists) and this can cause a variance of treatment. Unfortunately ‘Levodopa’ is prescribed from the beginning of the disease when it should be prescribed after about five years according to Doctor. Cesar Casteñada, Neurologo, Movement Disorders Specialist de Lima. The Parkinson’s medication “levodopa” has a shelf life and becomes less effective with time, and can even stop working after 5-10 years. Other drugs called Antagonists should be prescribed but they are expensive and may not be covered by health insurance in Peru (public or private).
Aside from drugs, the most important treatment that slows the diseases advancement is exercise but doctors here rarely mention this. One does not get a lot of time with the specialist and patient education is not a priority. It’s possible that doctors are not trained in what to recommend in terms of exercise therapy. Likewise referring people to a physiotherapist may lead to the same problem as in my experience in a regional city, physiotherapists lack training too.
What is needed is an expansion of the education about Parkinson’s disease for patients, their families and the medical community. Recently I attended the Parkinson’s Association meeting in Lima and found it to be so beneficial for the people emotionally as we connected with others like us. We became more educated about the disease and the event finished with some physical therapy which encouraged people and informed them about what they could do to help prevent the disease getting worse. We all participated and had fun.
Let me give you one case study that shows the benefits of education and of Parkinson’s sufferers meeting together. Over the last 6 months I have been chatting on WhatsApp and by phone with a lady of about 49 years of age with severe Parkinson’s. I’ve encouraged her about doing exercise, sent her videos of simple things she could do and articles to read about benefits of exercise and how to have a positive attitude. I pray for her too but unfortunately she never said she did any of the exercises. She was encouraged by our friendship but was often depressed and didn’t want to go out. She wanted to meet me and go to the Parkinson association meeting so she came all the way to Lima from a city 12 hours away. She attended the meeting and I could see that the people around her encouraging her and challenging her about some of the things that I have been saying for months. When she got home she found it hard because her symptoms were getting worse and the drugs weren’t working as well as they did before, but then she wrote me saying she was meeting someone else with Parkinson’s disease and she was realising the importance of exercise and they were doing it together. She realised with her diseases advancement she had to exercise and stretch as the drugs didn’t help much. Amazing progress.
She benefited from both the educational meeting of the Parkinson’s Association and uniting with other people who had the disease – this was a great encouragement to her. This is needed across Peru.
PS- There are many more stories to tell and more stories and background can be found in previous blogs.
Según la Organización Mundial de la Salud, 7 millones de personas en todo el mundo tienen la enfermedad de Parkinson. En Perú no hay estadísticas oficiales, pero se estima que 30,000 personas sufren de Parkinson y cada año se detectan 2000-3000 casos nuevos. Pero a partir de la observación y los comentarios de amigos aquí, las personas ocultan discapacidades o pueden ser no diagnosticadas para que las cifras sean más altas.
El tratamiento y la falta de educación sobre la enfermedad es preocupante. El diagnóstico de la enfermedad de Parkinson en Perú generalmente lo realiza un neurólogo, pero fuera de la capital no hay neurólogos especialistas en Parkinson (registrados como especialistas en Movimiento) y esto puede causar una variación del tratamiento. Desafortunadamente, “Levodopa” se prescribe desde el principio de la enfermedad cuando debe recetarse después de unos cinco años, según el médico. Cesar Casteñada, Neurologo, Especialista en Trastornos del Movimiento de Lima. El medicamento “levodopa” de la enfermedad de Parkinson tiene una vida útil y se vuelve menos efectivo con el tiempo, e incluso puede dejar de funcionar después de 5-10 años. Se deben recetar otros medicamentos llamados Antagonistas, pero son caros y es posible que no estén cubiertos por el seguro de salud en Perú (público o privado).
Aparte de los medicamentos, el tratamiento más importante que retarda el avance de las enfermedades es el ejercicio, pero los médicos aquí rara vez lo mencionan. Uno no tiene mucho tiempo con el especialista y la educación del paciente no es una prioridad. Es posible que los médicos no estén capacitados sobre qué recomendar en términos de terapia de ejercicios. Del mismo modo, remitir a las personas a un fisioterapeuta puede llevar al mismo problema que en mi experiencia en una ciudad regional, los fisioterapeutas también necesiten capacitación.
Lo que se necesita es una expansión de la educación sobre la enfermedad de Parkinson para los pacientes, sus familias y la comunidad médica. Recientemente, asistí a la reunión de la Asociación de Parkinson en Lima y descubrí que era muy beneficioso para las personas emocionalmente, ya que nos conectamos con otros como nosotros. Nos educamos más acerca de la enfermedad y el evento terminó con una terapia física que alentó a las personas y les informó sobre lo que podían hacer para ayudar a prevenir que la enfermedad empeorara. Todos participamos y nos divertimos.
Permítame darle un estudio de caso que muestra los beneficios de la educación y la reunión de los pacientes de Parkinson. Durante los últimos 6 meses he estado hablando en WhatsApp y por teléfono con una mujer de unos 49 años de edad con Parkinson grave. La alenté a hacer ejercicio, le envié videos de cosas simples que podía hacer y artículos para leer sobre los beneficios del ejercicio y cómo tener una actitud positiva. Ore por ella también, pero desafortunadamente ella nunca dijo que hizo ninguno de los ejercicios. Nuestra amistad la animaba pero a menudo estaba deprimida y no quería salir. Quería reunirse conmigo e ir a la reunión de la asociación de Parkinson, por lo que vino a Lima desde una ciudad a 12 horas de distancia. Ella asistió a la reunión y pude ver que las personas a su alrededor la alientan y la desafían por algunas de las cosas que he estado diciendo durante meses. Veía la muy atenta. Cuando llegó a casa, lo encontraba difícil porque sus síntomas empeoraron y las drogas no funcionaban tan bien como antes, pero luego me escribió diciendo que estaba con alguien más con la enfermedad de Parkinson y que se estaba dando cuenta de la importancia del ejercicio y lo hacían juntos. Se dio cuenta de que con el avance de sus enfermedades tenía que hacer ejercicio y estirarse ya que las drogas no ayudaban mucho. Increíble progreso.
Se benefició tanto de la reunión educativa de la Asociación de Parkinson como de la unión con otras personas que tenían la enfermedad, esto fue un gran estímulo para ella. Esto es necesario en todo el Perú.
PD: Hay muchas más historias que contar y más historias y antecedentes se pueden encontrar en blogs anteriores.
This is more information about a Parkinson’s meeting I attended in Lima in January. That may seem boring to some but the next two characters certainly ensured it was not boring. Also see previous blog about the shocking misdiagnosis of a lady who attended.
Joy
One of the first persons to meet us was a vibrant lady in her early 50’s who had had the disease since she was 28 years old. Lets call her “Joy” as that she was, she immediately told us her story, including the trials of being called a drunk but most of all she was encouraging people “keep moving”, “don’t cry” , “do exercise” and “you can do it”.
She was quite the chatterbox but I could see my friend who’d taken a 12 hour bus to meet me at the meeting moved by her positive example. I enjoyed seeing her encouraged by someone else to do all the things I’d been encouraging her to do. It was nice I could remain silent and let Joy do what came naturally. Thank God for people like Joy who inspire us.
Movement Therapist
She was a pocket rocket – small but strong. From the get go she had us eating from her hand as she sang huskily along to the music and moved her hips and arms as only a latino can. She asked us all to join in (as we could) and ‘feel’ the music. This was the warm up and people who’d been in tears minutes earlier sang along and moved with enthusiasm. What a great way to warm up that anyone can do – limited movement or not. Music warms the soul and helps you move and smile. The exercise therapist then taught the group some basic stretching movements.
Everyone had a great time and I joked she needed to come to Arequipa every week (1.5 hours by plane). She does have a regular slot in Lima where older folk can go and the association can pass on the details.
Again the positive outcomes of having Parkinson’s association meetings are clearcut. We can encourage each other and exercise together and I am hoping we can replicate in our city.
Gozo Personificada
Esta es más información sobre una reunión de Parkinson a la que asistí en Lima en enero. Eso puede parecer aburrido para algunos, pero los siguientes dos personajes sin duda aseguraron que no fuera aburrido. También vea el blog anterior sobre el sorprendente diagnóstico erróneo de una señora que asistió.
Gozo Una de las primeras personas que conocí fue una dama vibrante de unos 50 años que había contraído la enfermedad desde que tenía 28 años. Llamémosla “Alegría” como era, inmediatamente nos contó su historia, incluidas las pruebas de ser llamada borracha, pero sobre todo estaba animando a la gente a “seguir moviéndose”, “no llorar”, “hacer ejercicio”. Y usted puede hacerlo”. Ella estaba bastante en el chatterbox pero pude ver a mi amiga que había tomado un autobús de 12 horas para reunirse conmigo en la reunión conmovida por su ejemplo positivo. Disfruté viéndola animada por alguien más para hacer todas las cosas por las que la había alentado. Fue agradable poder permanecer en silencio y dejar que Joy hiciera lo que era natural. Gracias a Dios por personas como Joy que nos inspiran.
Terapeuta de movimiento Era un cohete de bolsillo, pequeña pero fuerte. Desde el principio, nos hizo comer de su mano mientras cantaba con la música y movía sus caderas y brazos como solo un latino puede. Nos pidió a todos que nos uniéramos (como pudiéramos) y “sintiéramos” la música. Este fue el calentamiento y las personas que habían estado llorando minutos antes cantaban y se movían con entusiasmo. Qué gran manera de calentar que cualquiera puede hacer, movimiento limitado o no. La música calienta el alma y te ayuda a moverse y sonreír. El terapeuta de ejercicios enseñó al grupo algunos movimientos básicos de estiramiento. Todos la pasaron muy bien y yo bromeaba que ella necesitaba venir a Arequipa cada semana (1.5 horas en avión). Ella reside en Lima, donde la gente mayor puede ir y la asociación puede transmitir los detalles.
Nuevamente, los resultados positivos de tener reuniones de la asociación de Parkinson son claros. Podemos animarnos mutuamente y hacer ejercicio juntos, y espero que podamos replicar en nuestra ciudad.
I’ve got a friend with Parkinson’s disease who feels alone. She doesn’t go out of her house unless she’s medicated and she has long off periods. She drags her feet when she walks and is embarrassed generally by the disease. She is self-conscious. Even her neighbours haven’t seen her walking. Why does she have such an attitude?
Peruvians tell me that there is prejudice against people with disability. They create a financial strain on their family and community. You don’t see many disabled on the streets except a few regular beggars. People hide away disabled family members. Children with disabilities are not exposed to normal outings and parents have low expectations of them which become self-fulfilling. One person was told not to touch an autistic children (as if it could be contagious). This is clearly unloving towards the child and exacerbates the disability further.
I created Facebook group for Parkinson’s Disease in my city with the idea of educating others about the disease and encouraging people to meet up to do exercise together. But people with Parkinson’s don’t want to come out. They may also be frightened of meeting someone new.
Why? It is a low trust society but also they could have mobility issues (taxi’s are expensive) or it might relate to other people’s attitude to them. Often disability in the family leads to people believing it is somehow the fault of the family. Maybe it is the fault of the parents or discipline from God. There is also a lot of superstition so they look for something or someone to blame.
If they go to church they sometimes get told to pray for healing and have faith more God. And if no healing happens they don’t want to go to church anymore. Worse still, one friend said they’ll go from religion to religion or to the witch doctor to a quack doctor looking for something that helps but never committing to any religion fully – he called it religion shopping.
So when people find out ‘the missionary’ has a disease they are shocked and tell me what they have been told “I need to pray and have faith”. Paul had huge faith and God didn’t heal him and there are people throughout the Bible who suffered: Daniel, Joseph, Naomi, Hannah. And Job was tested because of his good faith which messes with that idea a bit too. I am not suggesting I am like Job or Paul but I also sense that unspoken question ‘’what sin in your life is preventing your healing’. I’ll be the first to admit that I fail and sin more often than I’d like to admit openly but I believe God to be a gracious and loving God. He sees our hearts. If Jesus has died on the cross for my sin, I don’t think he will punish me (with a disease) unless it is a direct consequence of bad choices, ie smoking can lead to 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,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me”.
Jesus healed the blind man and displayed his power. Maybe God wants to demonstrate his power in me or others but it isn’t always clear God’s purpose in everything.
In the Bible we also see Jesus was forgiving: When a lady was condemned for adultery and the Jews wanted to stone her, What was Jesus response?
“Let any one of you who is without sin be the first to throw a stone at her.”
Meanwhile Jesus wrote something on the ground. If you feel judged by others remember Jesus asked her “who condemns you” to the lady. She said “Noone! Jesus responds -“Then neither do I condemn you, Go now and leave your life of sin.” We should always be striving to leave sin behind whatever health problems come our way. Our health problems are not a curse from God for past actions.
I don’t and can’t hide my disability and any questions or comments help educate one more person, one person at a time. I can’t sit home and hide – I have responsibilities and children and there are beautiful places to see and mountains to get to the top of. This picture is from Rainbow mountain, an amazingly beautiful place in Peru we went to this week.
I got a horse some of the way up. I climbed the last 300 metres at an altitude of 5000 metres and I helped my hesitant 9 year old niece to keep going. I walked all the way down. I am looking for the next challenge…. to raise funds for Parkinson’s disease and my trip to World Parkinson’s congress. Ideas welcome.
I won’t stop living and enjoying life, even if I have fear. Hopefully you can live this way too.
Ps. This is a big theological topic so I am not able to do it justice.
Prejuicio contra personas con discapacidad en el Perú.
Tengo una amiga con la enfermedad de Parkinson que se siente sola. Ella no sale de su casa a menos que esté medicada y tenga periodos prolongados. Ella arrastra los pies cuando camina y, en general, se siente avergonzada por la enfermedad. Ella es consciente de sí misma. Incluso sus vecinos no la han visto caminar. ¿Por qué tiene esa actitud?
Los peruanos me dicen que hay prejuicios contra las personas con discapacidad. No ves muchos discapacitados en las calles, excepto unos pocos mendigos regulares. La gente esconde a sus familiares discapacitados. Los niños con discapacidades no están expuestos a salidas normales y los padres tienen bajas expectativas de ellos, que se vuelven autosuficientes. A una persona se le dijo que no tocara a un niño autista (como si pudiera ser contagioso). Esto es claramente poco amoroso hacia el niño y exacerba aún más la discapacidad. Creé el grupo de Facebook para la enfermedad de Parkinson en mi ciudad con la idea de educar a otros sobre la enfermedad y alentar a las personas a reunirse para hacer ejercicio juntos. Pero las personas con Parkinson no quieren salir. Drepente pueden tener miedo de conocer a alguien nuevo.
¿Por qué? Es una sociedad de baja confianza, pero también podrían tener problemas de movilidad (los taxis son caros) o podrían estar relacionados con la actitud de los demás. A menudo, la discapacidad en la familia lleva a las personas a creer que de alguna manera es culpa de la familia. Tal vez sea culpa de los padres o disciplina de Dios. También hay mucha superstición por lo que buscan algo o alguien a quien culpar.
Si van a la iglesia, a veces se les dice que oren por sanidad y tengan más fe en Dios. Y si no hay curación, ya no quieren ir a la iglesia. Peor aún, un amigo le dijo que irán de religión en religión o de brujo a médico curandero en busca de algo que ayude, pero que nunca se comprometa con ninguna religión por completo, él lo llamó ir de compras a la religión.
Entonces, cuando la gente descubre que “el misionero” tiene una enfermedad, se escandalizan y me dicen lo que me han dicho “Necesito orar y tener fe”. Pablo tenía una gran fe y Dios no lo sanó y hay personas en toda la Biblia que sufrieron: Daniel, José, Noemí, Ana. Y Job fue probado debido a su buena fe, que también confunde un poco con esa idea. No estoy sugiriendo que soy como Job o Pablo, pero también siento que la pregunta no formulada “qué pecado en tu vida está impidiendo tu curación?” Seré la primera en admitir que fracasó y peco más a menudo de lo que me gustaría admitir abiertamente, pero creo que Dios es un Dios bondadoso y amoroso. Él ve nuestros corazones. Si Jesús murió en la cruz por mi pecado, no creo que me castigue (con una enfermedad) a menos que sea una consecuencia directa de malas decisiones, es decir, fumar puede provocar cáncer de pulmón. En la Biblia hay una historia sobre un hombre ciego (Juan, 9: 1–12) y los discípulos de Jesús preguntaron: “Rabino, ¿quién pecó, este hombre o sus padres, que nació ciego?”
“Ni este hombre ni sus padres pecaron”, dijo Jesús, “pero esto sucedió para que las obras de Dios se mostrarán en él. Mientras sea día, debemos hacer las obras del que me envió “.
Jesús sanó al ciego y mostró su poder. Tal vez Dios quiere demostrar su poder en mí o en otros, pero no siempre es claro el propósito de Dios en todo.
En la Biblia también vemos que Jesús perdonaba: cuando una mujer fue condenada por adulterio y los judíos querían apedrearla, ¿cuál fue la respuesta de Jesús?
“Que cualquiera de ustedes que este sin pecado sea el primero en tirarle una piedra”. Mientras tanto, Jesús escribió algo en el suelo. Si te sientes juzgado por otros, recuerda que Jesús le preguntó a ella “quién te condena”. Ella dice que ninguno y Jesús responde: “Entonces tampoco te condeno, vete ahora y abandona tu vida de pecado”. Siempre debemos esforzarnos por dejar el pecado detrás de cualquier problema de salud que se nos presente. Nuestros problemas de salud no son una maldición de Dios por las acciones pasadas.
No puedo y no puedo ocultar mi discapacidad y cualquier pregunta o comentario ayuda a educar a una persona más, una persona a la vez. No puedo sentarme en casa y esconderme, tengo responsabilidades y niños, y hay hermosos lugares para ver y montañas para llegar a la cima. Esta imagen es de Rainbow mountain, un lugar increíblemente hermoso en Perú al que fuimos esta semana.
Tuve un caballo en el camino. Subí los últimos 300 metros a una altura de 5000 metros y también ayudé a mi temerosa sobrina de 9 años. Bajé todo el camino hacia abajo para que no fuera del todo fácil. Estoy buscando el próximo reto…. para recaudar fondos para la enfermedad de Parkinson y mi viaje al congreso World Parkinson. Ideas bienvenidas.
No puedo dejar de vivir y disfrutar la vida, aun tengo miedo a veces. Espero que tu puedes vivir igual amigos.
PD. Este es un gran tema teológico, así que no puedo hacerle justicia.
