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Diagnosis

Newsletters and their importance – Noticias en Español.

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.

Joy – A Poem

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

Nuevo sitio web en español New website in Spanish.

I have created a Spanish website so you’ll find English below the Spanish

¿Por qué este sitio web?

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.

Los Menús son:

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.

Christine Jeyachandran

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.

Christine Jeyachandran

Video Launch – “What are the Benefits of Exercise? Parkinson’s secrets for living successfully!

“The Amazing Benefits of Exercise in combating Parkinson’s Disease”. People with Parkinson’s from around the globe unite to share their stories. #parkinsonsawarenessmonth #empoweredbyexercise #Parkinsonssecrets #parkinsonsdisease

Thirteen people with Parkinson’s from all around the world have joined forces to create a video about the benefits of exercise. Each has been diagnosed with Parkinson’s disease, a neurological degenerative movement disorder that  affects one’s balance, ability to walk, coordination and range of movement. Each experiences Parkinson’s differently but one thing is quite common – People with Parkinson’s are often apathetic or struggling with motivation because of the shortage of dopamine.  Muscle stiffness can make movement difficult, but fighting this movement disorder requires movement.

These Parkie’s are all passionate about one message. They want to encourage others to exercise to combat Parkinson’s because they’ve benefited dramatically; physically and emotionally. Most have found a sport they love which keeps them motivated and a community that helps motivate them too.  This video comes with a sequel discussing “What keeps you motivated”. 

These empowered people implore you to: 

“Start exercising, any physical activity you enjoy doing. Then do it with determination and intensity”. 

Though the world has stopped for COVID19, Parkinson’s disease never takes a day off and neither should you. Waiting to begin an exercise regimen is not an option. This video inspires and gives hope in a time of crisis.

Australian Christine Jeyachandran initiated this video project because she wanted to encourage others positively and knows what it is like to struggle: 

“I had to overcome apathy, doubts, fatigue, and fear but the benefits have been worth the effort” says Christine. Christine was diagnosed at 37 year of age with Parkinson’s Disease. Her story Handstand for Parkinson’s was selected as a finalist at the World Parkinson’s Congress amateur video competition. She grew in confidence, set new goals and kept training. She made a Before and After video which systematically shows contrasting footage of her balance, coordination, flexibility and sheer strength and it has inspired the Parkinson’s community. 

The power of exercise and targeted physical activity to help people live well with neurological conditions cannot be overemphasized”  stated Professor Meg Morris Parkinson’s exercise expert researcher and Head of Allied Health and Professor of Clinical & Rehabilitation Practice at La Trobe University, Melbourne Australia. 

The Sequel to this video is “What keeps you motivated?” which is an equally necessary topic. Click this Link below:

FOR MORE INFORMATION: Christine Jeyachandran

Parkinson’s is like a rope climb!

Parkinson’s is like a rope climb. You think you can’t do it but you hold on for dear life. But you start to climb, it aches, the rope burns. You keep trying. You learn new techniques. Little by little you move up and feel a sense of achievement. But always leave energy for the descent.

New treatment developments for Parkinson’s Disease

Many ask me questions about the new developments that are coming out to treat parkinson’s disease. While I know a lot sometimes I find it hard to explain so here is a great video from Dr Simon Lewis, from University of Sydney, who I met at the World Parkinson’s Congress. He explains everything you might need to know but it is 45 minutes long because it isn’t a simple question to answer.

I think it is worthwhile watching if you make the time. Please share with others and give it a like.

World Parkinson’s Congress 2019 Kyoto JAPAN

The World Parkinson’s Congress in Japan was amazing and life changing. Researcher from around the world joined with patients and carers to hear and share about the latest scientific developments and support each other in this journey called Parkinson’s disease.

A reception for Australian’s got me started on networking. There were hundreds of Aussies and over 60 countries represented. I was the only one from Peru.

I heard talks about advocacy, diet, the best exercise, depression/ apathy and anxiety and coping with early onset Parkinson’s with family/work. Some scientific talks that went over my head and others I’m reviewing at home to remember. I did yoga, a dance class and tango which was so empowering.

I met people from all around the world and I especially tried to connect with Latinos and Spanish people and encouraged people to come visit us in Peru and maybe volunteer there.
I told everyone about how tough it is for sufferers in PERU but was so excited to hear next time it will be in Barcelona so that means Peruvians can attend as the conference will be translated into Spanish as well.
My video did not win – but thanks again to everyone who voted nonetheless. The winning video was professional, one of four entries by the same person and about a legendary campaigner/PWP in the Parkinson’s world who had passed away suddenly. A worthy winner indeed.
It was amazing to see how different the symptoms were around us and that there must have been over 200 people under 55 with Parkinson’s at the conference. Over 2000 people attended from 60 countries.
I loved it so much that I can’t wait for World Parkinson’s Congress in 2022. #WPC2022

Knowing Spanish, I hope I might help in some way with organisation as it is run by a small NGO and as you can imagine it is a mammoth undertaking and they need volunteers to help run it. Maybe you could come and volunteer too.  

Saddened by Parkinson’s stories in Peru

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.

Thanks everyone for sharing and donating to the page: https://www.gofundme.com/hand-stand-for-parkinson-disease

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.

Peru and Parkinson’s Disease

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.

Articles in Spanish Media:

https://elperuano.pe/noticia-parkinsonconociendo-enfermedad-48861.aspx

https://peru21.pe/amp/lima/lima-habria-10-000-personas-parkinson-72412

https://alicia.concytec.gob.pe/vufind/Record/UPCH_2f01252d8dff0d77e52d8faa46f8b494

hLa Enfermedad de Parkinson’s en Peru

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.

Artículos en medios españoles esten arriba.

Possible Parkinson’s misdiagnosis (not me!)

“According to my evaluation you may not even have Parkinson’s Disease!” said the doctor to the lady in front of us. I was in Lima briefly and attended a meeting of the Parkinson’s association which has recently formed or revived. It quickly became clear how invaluable this meeting was and the power these meetings if they could be held throughout Peru. A guest Parkinson’s Doctor evaluated 4 cases (not mine) and one lady had this said to her.

I met another who I wondered àbout her diagnosis and worse still her doctor had encouraged her to have surgery. Thankfully she hadn’t been operated on and was evaluating her symptoms. Both had hands shake when nervous but this is not symptom of PD necessarily.  A tremor at rest is one of the first symptoms of the disease.

The second shocking news; most at the meeting had been prescribed a drug called Levadopa at diagnosis. Our visiting expert said that it should not be prescribed until about 5 years after the diagnosis. As time progresses you need to take more and more of thi to get the same effect. Even I was prescribed Levadopa on diagnosis but with my GP with us, we corrected that quickly. Looking back I believe it was my GPs insistence not the doctor.

This information needs to be spread amongst the PD community in Peru as evidently doctors or neurologists are often not movement specialists which is what specialists in Parkinson’s disease are called and sadly outside of Lima there are no movement specialists (an area of neurology). The patients are also restricted in who they see depending on their insurance or financial capacity but a list of movement specialists in Lima can be obtained. I will endeavor to get an updated list to share. Not all doctors are equally trained or knowledgeable.

I didn’t expect such a meeting outcome. Much more to report soon just as interesting.


“Es posible que ella ni siquiera tenga la enfermedad de Parkinson” (no a mi)

“¡Según mi evaluación, es posible que ni siquiera tenga la enfermedad de Parkinson!”, Dijo el doctor a la señora que estaba frente a nosotros. Estuve en Lima brevemente y asistí a una reunión de la asociación de Parkinson. Rápidamente se hizo evidente cuán valiosa era esta reunión y el poder de estas reuniones si se pudieran celebrar en todo el Perú. Un médico de Parkinson invitado evaluó 4 casos (no el mio), a una de la 4 personas le dijo que no era Parkinson lo que tenía.

También conocí a otra persona (recien diagnosticado), yo me preguntaba sobre su diagnóstico y fue peor aún, su médico la había alentado a que se sometiera a una cirugía. Afortunadamente, no había sido operada porque sus síntomas de la enfermedad eran pocos (pero no soy médico). A ambos les temblaban las manos cuando estaban nerviosos, pero esto no es necesariamente un síntoma de la EP. Normalmente el temblor es en reposo con la enfermedad de parkinsons (EP) cuando se diagnostica.

La segunda noticia impactante; a la mayoría en la reunión se le había prescrito un medicamento llamado Levadopa en el momento del diagnóstico. Nuestro experto visitante dijo que no se debe prescribir hasta aproximadamente 5 años después del diagnóstico. Este medica, por lo que no debe comenzar a tomarlo demasiado pronto. A medida que avanza el tiempo, debe tomar más y más para obtener el mismo efecto. Incluso a mi me recetaron Levadopa en el diagnóstico, pero con mi médico de cabecera lo corregimos rápidamente. Mirando hacia atrás, creo que fue la insistencia de mi médico de cabecera y no el médico de EP.

Esta información debe distribuirse entre la comunidad de Parkinson’s en Perú, ya que, evidentemente, los médicos o los neurólogos no suelen ser especialistas en movimiento, que es como se llaman los especialistas en la enfermedad de Parkinson y, lamentablemente, fuera de Lima no hay especialistas en movimiento (un área de neurología). Los pacientes también tienen restricciones en cuanto a quién ven, dependiendo de su seguro o capacidad financiera, pero se puede obtener una lista de especialistas en movimiento en Lima. Me esforzaré por obtener una lista actualizada para compartir. No todos los médicos están igualmente capacitados o bien informados.

No esperaba tal resultado de la reunión.

Manténgase en sintonía para la segunda igualmente interesante.