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Parkinsons /Friendships

Starting the Parkinson’s Association in Arequipa

Speaking at a Lima event of the Parkinson’s Association

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

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

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

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

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

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

Visiting Parkinson’s Geneticist – Dr Nacho Mata

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

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

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

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

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

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

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

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

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

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


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.  

World Parkinson’s Day in Lima 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.

Photos speak louder than words so enjoy.

TED Talk Tips – plus change of blog name to Handstand for Parkinson’s

Was feeling a bit sick this day so lay in bed reading this book. Love it.

I really love TED talks and I found a book on a friend’s shelf “How to deliver a TED talk”. I quickly asked to borrow it. I have always enjoyed public speaking and inspired by the book I drafted a talk about “an idea worth spreading” which is the catchphrase of TED. I’m giving a talk next week so it is perfect timing.

As I kept reading I now see many changes that need to be made, but I knew If I didn’t draft it today I would forget all the good advice from the book.

The first tip that stood out was you need a catchphrase, summarising your main idea(s) ideally short 3-12 words, action centric and include word repetition, rhythm or even poetry. Not all are possible at once but it should be repeated various times.

The second tip I really liked was that you need to catch your audience’s attention in the first 30 seconds. If not, it’s really hard later. There are extensive list of how to do this but I won’t give it all away (Jeremey Donovan wouldn’t like that)

There are lots of tips to fine tune my talk but for me this time the stakes are not as high as doing a real TED talk. But this leads to the next tip I am following already. You need lots of real life practice to get good at public speaking. Without this it is unlikely you’ll get on TED. But that said it is not about being an expert speaker, but a passionate expert in your particular area.

You can nominate yourself to be on TED but if others do, it is even better.

I am excited now to improve my public speaking skills so will continue to take opportunities to share “my idea worth sharing” (that’s another blog post).

I’d love share in your community or church group or Parkinson’s group. I’ll be in Australia from June to August. Other locations could be harder but you never know, I love to travel.

I better get back to writing my speech for World Parkinson’s Day on 11th April which will be in Spanish. This is no easy task in another language. I’ll need even longer to practice and memorise this one. I better get to work.

PS. I am attempting to move all media to name: Handstand for Parkinson’s (often without apostrophe). I am told this is better – uniformity. A work in progress as it is a bit mixed.

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.

Joy personified

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.

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.