My favourite Christmas tradition in Australia

The sea of candle lights rise and fall, again and again, like the waves on the ocean; occasionally punctuated by us singing Hallelujah,  Hallelujah with each lift of our candles. We don’t know the rest of the words, no one cares. Handel’s Messiah is only meant for the choir and to help us create the dance of lights! Our flickering candles show that community joined together can dance so much more beautifully together than alone. 

An integral part of Christmas celebrations in Australia is Carols by Candlelight, held outdoors, as Christmas is in the summer down-under. These are held by local councils, communities and churches in local parks and in the city it is a televised event. The show consists of a variety of singers,  celebrities and choirs singing old fashioned Christmas song with a visit from Santa and Celebrities like the Wiggles (dancing and singing quartet). For a person with Parkinson’s to consider going,  it’s quite the undertaking.

For the uninitiated – let me explain.  Firstly, for me, getting into town takes about 45 mins plus a 10 minute walk at each end. Thankfully most days I am up for this but if you are not, you need to have a disabled car parking official permit (each country has their owns systems). 

Next challenge is because it is a free event you have to sit in your reserved spot on the grass from 1 or 2pm onward, until 7pm when the show time starts. Everyone brings a blanket and picnic basket and you can buy goodie packs that include the candles, song books and snacks and the proceeds go to the Salvation Army charity for the homeless.

Still still is tough, thankfully you can dance to the pre show entertainment and we (friends/ family members) take turns going for walks, visiting the facilities which include disabled toilets preshow. Despite doing lots of pilates, a helping hand to get up and down from the ground is good and we use low beach chairs for back support.

It is a long day for someone with PD, so I am prepared and willing to take a little siesta in the park if needed – but s eriously it is buzzing with noise. We talk, we play games, we meet our picnic rug neighbours.  This is a tradition from my childhood and my our children love it too and are glad it hasn’t been  cancelled, but as luck would have it I got COVID and we couldn’t attend this year. The unexpected yet again.  

The songs bring us back to the meaning a Christmas:The story of an unexpected baby, without a hospital bed, with unexpected visitors, and an unexpected life and death. We all face an unexpected future but the joy of music and community again brings me joy. 

Research has shown that those who are more active in community do better with Parkinson’s so make sure you renew or find new new traditions to get involved in community this Christmas. I hope you can join your community for Christmas again this year in whatever shape or form that might be.  Remember the sea of candles dancing. Join in the dance of lights because in community joined together can dance so much more beautifully together than alone.

Your film has 44 wonderful comments

My Film” Would you sell your house to save your mother” was recently in a video competition called “focus on ability”. Unfortunately the website could only hold 10 comments at a time so I couldn’t see all the comments and I asked Ryan from Focus on Ability if there was a way I could see them all. He wrote “Your film has 44 wonderful comments”. I was shocked, that it had so many and most were from people I didn’t even know.

Thank-you everyone for voting and for sharing and for the amazing comments on the video. I do not believe it won the popular vote but you never know and on the 27th October about 7pm Australian time it will be announced in a ceremony on facebook of “Focus on Ability”. It is up for a judges award as an International Documentary.

Win or loose it has been a valuable experience for me in editing the video and managing the whole process of the competition. The video has been seen by over a 1000 people more than saw it previously and many have been challenged, realised how blessed they are and learnt something about Parkinson’s they didn’t know. I have also connected with many people who helped me share it yet again. 

It also encouraged me to start another video project but this time with a young professional. I don’t want to give too much away but I think it is going to to be a powerful short documentary and our aim is to get it into a mainstream film festival. 

Of course I’m now learning you need funding to promote your film and bring it to the attention of the public but since we’ve stepped out in faith and filmed the project we’re going to keep going and have faith that the funding to promote it will come in once we have the final product, it should sell itself. 

I don’t want to give too much away just yet but watch this space. 

Thanks again for your support and interest. 

Christine J.

44 Comments from around the World

Beautiful and heart touching video. Creates a lot of awareness on the disease.. God bless the family.Marsden Park Australia
What an inspiring and educational short film CongratulationsSanta Monica United States
Very touchingSutherland Australia
super videowesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundoPereira Colombia
Tried to write something but have no words to describe mother .Liverpool Australia
This portrays humanity and love that is genuine.Bamenda Cameroon
Excellent work by Christine in raising awareness about this disease and the challenges the patient and their families face.Westleigh Australia
Christina honoured her mother by following and keeping one of the ten commandments.Kolkata India
Inspiring and Impactful Love is a verb.Sydney Australia
Well done ChristineCaterham United Kingdom
Excellent work of her daughter. She shows compassion and love for her mother. Credit goes to the mother herself while rearing her. She has learnt from her mother herself. It's a rare exampleDelhi India
Es una gran realidad no hay cura para el Parkinson yo tambin lo sufro pero el amor todo lo puede est gran familia merece ganar con ste vdeo.Voten e inviten a ms personas que lo vean y voten por el. El parkinson no nos definesin embargo es una enfermedad muy difcil de sobrellevar tanto el paciente como la familia se van consumiendo con la enfermedad.Escobedo Mexico
Excellent story and awareness of this decease. Amazing family and the way they took care of their mother
Berwick Australia
JuampyJuampys
Christina did a wonderful thing I wish she become a roll model for many. Many do not care for their aged parents even though they have plenty of wealth. May the Lord bless ChristinaPathanamthitta Kerala India
Very touching. Indeed true love can do anything.Thane-Mumbai India
Muy conmovedora historia y lo ms importante lucharon por su madre la f mueve montaas un ejemplo a seguir bendicionesTALARA Peru
Excellent very touchingChennai India
Truth well told…Bengaluru India
Thank you for helping raise awareness for this unrelenting disease. We all need to speak up to raise awareness so we can end PD nowCalifornia United States
PIURAPiura Peru
A heartwarming story will told. May the angels of God protect us all from evil.Oatley Australia
Inspirational story about a family willing to sacrifice their home to help their mother with Parkinson's.Penshurst Australia
Piura
Piura
An extremely moving film. What a wonderful sacrifice this family has made for their mother.Caterham United Kingdom
It is an amazing story well doneCarlingford Australia
Amazing story Thank you for sharing and creating the video to raise awareness on debilitating Parkinsons disease and its impact on function family and finance. Thank you Pray that there will be a breakthrough in finding cure for this disease.Homebush Australia
Very natural without exaggeration down to earth informative filmBangalore KarnatakaIndia Australia
Very moving Hope we find a cure for Parkinson soon. Instead of spending trillions of dollars on war machinery we should work on finding cure for Parkinson AIDS Cancer etc.
Warminster United States
Rosita is not like many people of this world but allowing God to change the way she thinks. She knows how to do everything that is good and pleasing to God.Romans 122 CEV. In serving her mother's needs she realizes the value of mothers. Parkinson's is debilitating and without medical intervention life is severely restricted and causes an intense emotional with a mental impact that isolates the person. Thanks for highlighting the need in some little published countries.
Cromer Australia
A true story of love compassion and sacrifice an example to emulate of Honouring your father and mother a story that will inspire many to pray for and support those suffering from Parkinsons disease.Caterham United Kingdom
Very enlightening thank you.2207 Australia
Well done a brave step to save the mother and I support this because as scriptures says nothing is greater then LOVE… It is God's love that saved us from the bondage of sins and saitan…All Praise and Glory to God for giving some comfort for this sister…
Little Andaman India

The world needs to see this powerful story. Wish this film will get recognized and that many more will benefit from this very open and honest effort.
Bangalore India
A close knit family's to put the Mother above all their personal need which is selling their prized possession 'The House' is very touching and moving. Very appealing film.
Bangalore India
Truly touched.
Sydney Australia
Thankyou everyone for your votes. I know I have to a wonderful community supporting me. My friends like Ana Mara Sabela Lizzie Esme Larry. David and my kids too have put in hours of help checking and rechecking. It takes a community to make a documentary. And thanks to the family for inspiring so many. I have a longer version of their story at Christine Jeya on YouTube. We hope this video shows the need for a cure and better treatment for all.Arequipa Peru
Inspirational.Concord Australia
Wonderful Christine So good
Caterham United Kingdom
A video which depicts reality of life.It was a very moving video about the effect of the disease. More so about the sacrifice of the family to give the life back to the mother who gave them life in the first place and made so many sacrifices to bring them up.The video is about celebration of life rather than gloomy helpless one It is about victory over one of the most debilitating diseases in life.Penshurst Australia
Well done. If the problem can be solved by money its not a problem its the costs. – Jewish proverb. I would do the same.
Old lyme United States
Ta Doris t vas a ganar
Piura Peru
Muy lindo y espero que esto llegue a muchas personas para que sepan su historia
Piura Peru

Rise21 Finalist – Alianza Iberoamericana de Parkinson

Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals. 

Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world.
See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:

Please watch the video at this LINK: https://lnkd.in/dMt3Jds

Special thanks to Ludovic Kohn for the drone footage – check out his channel here for other amazing footage. Amazing! More of his videos on his youtube channel:

https://www.youtube.com/channel/UCbCDhE-V0Id4d9YlIiiEQrg


 #health #parkinson #rise21 Ignacio Mata

Alliance of Parkinson’s for Spanish speakers

Parkinson’s Disease is severely disabling in parts of the Spanish speaking world because of late diagnosis and poor treatment. Parkinson’s robs one ability to walk, talk, eat and smile. Some of this suffering is preventable.

Parkinson’s Disease is a growing pandemic with 7-10 million worldwide and it’s prevalence has doubled in the last 25 years and will double again in the next  20 years if we don’t find a fight for change. 2%  of people over 60 years of age but in Australia 20% of those diagnosed are under 50. Statistics don’t exist in many Spanish speaking countries. The whole family is affected economically and emotionally.  

In the west treatment exists. Parkinson’s disease can still be disabling and painful but in Spanish speaking countries treatment can be substantially lower (each country varies). I’m a founder of an iniative called Alianza IberoAmerican de Parkinson. This initiative is needed because:

  • Patient’s lack self management and lifestyle and trustworthy disease education would help address – false information (cure scams), social stigmas, dangers of isolation and inactivity and depression that lead to rapid disease advancement.
  • Many countries don’t have exercise and multidisciplinary programs that help prevent progression and advocacy and awareness raising is needed for this
  • and more health professionals need training in Parkinson’s disease. 

The Idea

The idea is to provide accessibility to Parkinson’s resources to patients, families, health professionals and associations. In turn we can unite for training opportunities across Iberoamerica (The Americas and other Spanish speaking locations). This will strengthen capacities to prevent disease progression, raise consciousness and educate professionals better in Parkinsons in Spanish and ultimately create advocacy for health service improvement including exercise and other key multidisciplinary programs. 

Such an alliance of support has never been done in Spanish. Everyone has been working in silos often reinventing the wheel. With COVID forcing leaders like cofounder Sonia Elizabeth and I  online as we cannot hold in-person meetings. The demographic is older and  some have struggle to adapt to zoom meetings but our community leaders, health professionals and associations are now online, zooming and doing webinars and we realised that we are closer than we thought and can work together.  

Our approach is unique as we’re not rushing to create new resources, we’re bringing together what already exists with the help of the World Parkinson’s Congress, who is collating resources in English. Our work will be to have such a directory in Spanish. International health associations exist for professionals but patient friendly resources will be prioritised. 

The Project has grabbed the attention of the target population in the Parkinson’s community. Three big associations are eager for us to share their Spanish resources. Over 10 countries are represented so far including associations, advocates and professionals. We surveyed their thoughts concerning the needs of their group and their commitment to help and resources they have. This has determined our aims. 

We are doing education webinars in partnership with others and next is with the Mohammad Ali Parkinson’s Foundation and the Federacion Espanola of Parkinson. The comments we are receiving show the difference we’re making in our target population and the ageement they have to see this succeed.

The potential

 “Scaling up means expanding, adapting and sustaining successful policies, programs, and projects in different places over time to reach a greater number of people”(Hartmann and Linn, 2008). This exactly the aim of this initiative – Our goal  is to increase the quantity, quality and accessibility  of resources available concerning Parkinson’s disease in Spanish to improve the quality of lives of people with Parkinsons throughout the Spanish speaking community.

Our strategies for Scaling Social impact include expanding our network of affiliated organisations connected by the shared goals and activities to disseminate a directory of resources, promote courses for professionals, and raise awareness together (online, printable, videos and webinars),

Our business plan focuses on these aims and encourages advocacy for better services and policies concerning Parkinson’s treatment. Ultimately we’d like to evaluate lessons learnt in policy and service initiatives and advocacy to create  context specific reviews that could guide further efforts. 

Future investment would help:

Currently we have no funding for awareness campaigns, paid staff or a web platform. We have volunteers and willpower. Future investment could create a technological platform, help cover costs of awareness raising and ultimately we’d like to provide leadership training across our partners organisation to build up effective and discerning leaders who can disseminate resources and lead awareness raising campaigns in a latino context. 

So what next… let us know if you can help.

Featured in Spanish Blog – Translation here.

https://pdeparkinson.blogspot.com/2021/01/fuerza-y-determinacion.html

Para leer en espanol was al enlace arriba.

This is a guest blog I made on a Spanish website – I translated it into English here:

I am Christine Jeyachandran and I was diagnosed with Parkinson’s disease seven years ago, when I was 37 years old. People are surprised that I have Parkinson’s because of my age and also because I am open about it. It was difficult at the beginning . In 2018 I wrote: “Sometimes I feel sad. This disease got me too young, I am only 41 years old. I grieve the loss of what I can’t do. I hope I can be there for my children when I am older and be full of energy and strength.”

But in my journey I have shown that I should not wait for the bad things to happen, but to change my destiny with determination. For me, light exercise was not working. My Parkinson’s symptoms were getting worse, my left hand was shaking and my ability to walk and my arms were affected. Light exercise was not helping me prevent my body from deteriorating further. In 2018 I decided to take classes, 3 times a week of artistic gymnastics, starting 1 hour per week of class and going up to 2 hours.

It was very hard because I couldn’t move much, I was sweating and sweating, my muscles hurt and I was afraid to do some exercises…. But I filmed my experience and my story. My video Handstand for Parkinson’s was a finalist in the World Parkinson’s Congress video competition. I regained my range of motion, balance, flexibility, coordination and I was stronger than ever. It is amazing for me to see the change in my Before and After exercise video.

Now I am an ambassador for the World Parkinson Congress 2022 (WPC), I want to encourage you to go (Barcelona). It is for professionals and people with Parkinson’s and their caregivers. WPC changed my life, because I was able to learn a lot about Parkinson’s and I came back ready to help my community in Peru. I am Australian but I have lived in Peru with my family for 10 years now. I am now passionately helping to educate people with Parkinson’s and encouraging them to do exercises to treat Parkinson’s. I want to finish with a reflection on the attitude of people with Parkinson’s.

I want to end with a reflection on the Parkinson’s attitude I see around me. People with Parkinson’s usually don’t like to go out in the street because there is prejudice against people with disabilities. People hide their disability. Sometimes others want to blame and say it is a curse from God.

If they go to church, sometimes they are told to pray and to have more faith in God for healing. If there is no healing, they don’t want to go to church anymore. On once or twice it was said to me: “You need to pray and have faith”. I agree I need to pray more and have more faith but I want to say it’s nobody’s fault that I (or you) have Parkinson’s.

There are many people in the Bible like Paul, who had great faith and God did not heal him and there are people who suffered: Daniel, Joseph, Naomi, Hannah and Job. I will be the first to admit that I fail more often than I would like to openly admit, but I believe that God is gracious and loving. He sees our hearts. If Jesus died on the cross for my sin, I don’t believe he would punish me (with a disease) unless it is a direct consequence of bad choices, i.e. smoking can cause lung cancer.

In the Bible there is a story about a blind man (John 9: 1-12) and Jesus’ disciples asked, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” Jesus said, “but this happened so that the works of God might be shown in him. As long as it is day, we must do the works of him who sent me.”

Jesus healed the blind man and showed his power. I don’t know why I have Parkinson’s, but I have had the opportunity to meet many with Parkinson’s and connect with them. I can encourage and educate them and that gives me joy and purpose and I can love them in a world where they feel rejected at times. The disease is not good but I know for sure it is not a curse from God because of past actions.

I cannot hide my disability and any question or comment helps educate one more person, one person at a time. I can’t sit at home and hide, I have responsibilities and children, and there are beautiful places to see and mountains to get to the top off. I can’t stop living and enjoying life, even if I am scared sometimes.

I have learned that ‘Courage is not the absence of fear, but the ability to go on in spite of fear’.

Christine Jeyachandran

Ambassador of the World Parkinson Congress 2022

Blog: English and Spanish https://handstandforparkinsons.com

Spanish website: https://activateparkinson.com

Youtube: Christine Jeya, https://www.youtube.com/c/ChristineJeya

Twitter: handstand for parkinson’s @christinejeya

Serendipitous meeting

Esta historia esta en español en https://activateparkinson.com/

I was on vacation, relaxing when I met a friendly guy in the same hotel, let’s call him Kevin. He is traveling alone, in his 50’s and my 6th sense told me there was a reason why I should chat with him. But he worked in real estate, no connection there!

But when I told him about my PD association he was full of advice as he had worked in pharmaceuticals previously. He said I should get a social media plan for my organisation. Of course I know that social media is important to get the message out so I nodded politely when he kept pushing this point. 

But the next day he went from a different angle, the more members you have the more you can influence. I have about 100 members and maybe contact with 200 nationwide.. not enough to get this on the national agenda, not even enough for the pharmaceutical companies to take me seriously he says. He said if you can get 5000 people then you have power. 

The penny dropped.

So we need to use paid advertising in social media to get it beyond PD circles. It turns out Kevin had a deceased parent with Parkinson’s and it was clear he’d never heard of such support groups. Point made. 

Activate (my NGO) needs to have a presence that cannot be ignored, so that Parkinson’s treatment and education are actually on the agenda. And so that pharmaceutical companies will come to the party with conference funding, educational resources and doctors etc. Let’s be honest – we’ll always need them, but they need us too and if we group together, just maybe we can influence them for the better.

I asked Kevin to help me draft a letter to send to the pharmaceutical companies which he kindly did but now I’ve got to step back and set up my systems to meet the swell of responses that will come in from my media campaign (create that too) and automated response forms and information sheets etc. Yes, this could take months but April is Parkinson’s awareness month so that could give me a good target. 

It is funny how even on vacation the coincidental meetings with people can influence work. 

Newspaper Article: Getting Parkinson’s patients out of their homes

Quick note: Please subscribe to my blog to get new updates. Thank-you for reading and commenting too.

Usually activities shut down over Christmas/ new year but something in me said “Let’s start this group and keep the momentum going”. So we started in November and continued with meetings in December, January and February and March with Dr Karlos Lizarragas’s visit. It was a busy few months but it turned out to be a good decision because the week after the Doctors visit we all went into lockdown. I was grateful that I got to know the people who came and connect with them over the ‘summer break’. Now we can’t meet and it is day 108 of the lockdown and we’ve got at least a month to go and because many are elderly and at risk it will be some time before we can meet again.

This is a newspaper article that appeared in the CORREO newspaper the week Dr Karlo came. I have attached the link but have included a rough translation as the article in in Spanish. It might be old news but it reminds me to keep sending them messages of hope and encouragement by whatsapp or sms to my people here and since I didn’t translate this is earlier it is still new to most of you. Please note it is a loose translation and sounds a little strange but you can get the gist. 😉

This article is titled: “Those affected by Parkinson’s take on the challenge to to fight against Parkinson’s”

https://diariocorreo.pe/edicion/arequipa/afectados-por-enfermedad-asumen-reto-se-superar-parkinson-933641/

The Activate Association of Parkinson’s is growing and on Tuesday, March 3, they will receive the Arequipa neurologist Karlo Lizárraga Mendoza 03/01/2020 at 12:30

Last December, The Correo (newspaper) spread the encouraging message of Christine Jeyachandran, an evangelical Christian missionary, who manages well her symptoms in her body although it is affected by the disorder of the central nervous system. Three months later, her aim to create the Parkinson’s League – ‘Get Active'(Activate) is paying off with 26 people attended the last meeting. Christine, who has overcome the limitations of the disease through gym sessions, wishes her peers a similar experience. The first step, and perhaps the most difficult, has been to encourage this significant group of people of different ages to come along and not hide at homes. They are now the founding members of Actívate, and the next step will be to involve everyone in physical exercise as therapy.

Limitations. Parkinson is terrible: the physical limitations, the inability to speak loud and clear, tremors, dragging feet, drooling, diminished facial expression, the lack of balance, the frustration of not walking well, all this causes a heavy load of vulnerability that you carry to everywhere” says Christine to describe the diagnosis of parkinson’s. Activate began on November 3 with 5 members supported by two professionals from the Honorio Delgado Espinoza hospital, one of them is the psychologist Rita Ames who has strengthened Christine’s knowledge of group management and emotions of those affected by the disease.

Since then until February, they have met three times and each time the number of members has increased, reaching 26 people who have left isolation and are willing to continue on the path of integrating and growing the League, eager to achieve control of your movements. “Affected people do not have to be embarrassed in our meetings. You don’t have to explain your symptoms to anyone here because we understand each other. The reason for our name, Get active (Activate yourself), is that we want to do gymnastics, but we haven’t started for various reasons, but the first thing is that they came out of hiding, “says the promoter of the organization excitedly. In these sessions, with the help of the psychologist Rita Ames, everyone can share their ideas, some very shy and others less, they tell their stories, tears are not lacking because they finally have people by their side who understand them.

TO THE FAMILY. The meetings are focused on educating people and their families about the disease and about exercises that can help overcome their symptoms to improve their quality of life. Rita Ames indicates that many suffer from depression and apathy but they are explained how the Activate League will work, that is, with their participation. They find it hard to stop focusing on their weaknesses, but little by little they have shown hope in their eyes. One of the participants, Juan, acknowledged that at first he was only interested in reinforcing his depression due to the disease and its symptoms, but now he maintains the hope of engaging in physical exercises as a means of reducing them and thus improving his quality of life.

MUCH FAITH. “Telling PD patients they have a movement disorder and leaving it at that is a self-fulfilling prophecy. It would be better to tell them, “You have a disorder in which the motivation for movement is significantly impaired, along with movement . But by knowing that, and using conscious mental effort, you may be able to override the impairment to a significant degree” says Canadian psychiatrist Norman Doidge, and members of the Activate League have begun to believe it.

Dr Karlo Lizarraga’s Visit to Arequipa – Visita de Dr Lizarraga

El español está abajo los fotos.

Over a 100 people attended the visit of Dr Karlo Lizarraga. He was so genuinely interested to meet people and hear and answer their questions. He is from Arequipa but lives in the US.

More than 60% of the attendees were new contacts for Activate and we now have doubled the number of people with parkinson’s we have with 80 with almost 60 on the whatsapp group and new calls coming in everyday. 

I was thankful for all the people with Parkinson’s (PWP), friends and family of Activate who helped out. We also couldn’t have done it without Dr Isabelle Carmago organising a huge auditorium in the hospital. Volunteers did registration, drinks table and brought gifts. 

I didn’t want to talk too much so Elizabeth shared beautifully her story. Juan brought tears to my eyes as he shared that he has new hope for the future. Juan kinda took over the show and isn’t that what every leader wants, people empowered to step up and take things on. 

Another friend who helped with the projection – at last minute she went out of her way to go and borrow a projector and set it up. Then the video wouldn’t play. So we struggled and finally got it going but without sound. Thankfully my friend Favi who kindly took the photos of the event noticed the problem and corrected the sound and we restarted with sound. What a relief. The video was a new before and after of my experience with gymnastics.

As it was finishing the lady beside me leaned in and said “so exercise helps with Parkinson’s disease”….yes!!!!  I reiterated this point again that yes exercise can improve your symptoms and movement and increase your quality of life. 

Dr Lizarraga is introducing a form of telecare which should be able to help the Peruvian patients but it is early stages so I won’t try and explain it. Dr Lizarraga is also working on advancing the training of neurologists here so that should people with Parkinson’s. 

DR Lizarraga visit and the patient support our group provides is something exciting for the community of Parkinson’s and I hope and pray especially the professional community will be willing to be trained in new methods of managing parkinson’s. 

Our next event aims to help train professionals to assess Parkinson’s patients and recommend exercise plans for them with Dr Koni Mejia from LIMA. We’ll be doing this on a practical way with real patients and teaching some exercises that help PWP. 

Special thanks to Dr Lizarraga for helping us in effect “launch” Activate in a more prominent way. He has also helped me think through some of the issues and define our aims too. Organising his speaking engagement (with the hospitals help)  has turned into a mentoring role, even if by email. Thanks Dr Lizarraga. 

All photo credits go to FAVI BEJAR Fotografia http://favibejar.com/

ESPAÑOL – Visita del Dr. Karlo Lizarraga a Arequipa

Más de 100 personas asistieron al conversatorio del Dr. Karlo Lizarraga. Estaba tan genuinamente interesado en conocer gente y escuchar y responder sus preguntas. Él es Arequipeño pero vive en los Estados Unidos.

Más del 60% de los asistentes eran nuevos contactos para Activate. Tenemos ahora 80 contactos, y 60 en el grupo de WhatsApp y nuevas llamadas todos los días.

Estaba agradecida por todas las personas con Parkinson (PWP), amigos y familiares de Activate que ayudaron. Tampoco podríamos haberlo hecho sin la Dra. Isabelle Carmago organizando un gran auditorio en el hospital. Los voluntarios se registraron, cuidaba un mesa de bebidas a y trajeron regalos.

No quería hablar demasiado, así que Elizabeth compartió bellamente su historia. Juan trajo lágrimas a mis ojos cuando compartió que tenía una nueva esperanza para el futuro. Juan ayudaba con el programa y esto es lo que todo líder quiere, la gente está capacitada para dar un paso adelante y asumir las cosas.

Otra amiga ayudó con la proyección, en el último momento, ella hizo todo lo posible pedir prestado un proyector y configurarlo, pero el video no se reproducirá, así que luchamos y finalmente lo pusimos en marcha pero sin sonido. Afortunadamente, mi amiga Favi, quien amablemente tomó las fotos del evento, notó el problema, corrigió el sonido y lo reiniciamos. Qué alivio. El video fue un nuevo antes y después de mi experiencia con la gimnasia.

Cuando estaba terminando, la señora a mi lado se inclinó y dijo “así que el ejercicio ayuda con la enfermedad de Parkinson” … ¡sí! Reiteré este punto nuevamente que sí, el ejercicio puede mejorar sus síntomas y movimiento y aumentar su calidad de vida.

El Dr. Lizarraga está introduciendo una forma de teleasistencia que debería ser capaz de ayudar a los pacientes peruanos, pero es una etapa temprana, así que no intentaré explicarlo. El Dr. Lizarraga también está trabajando para avanzar en la formación de neurólogos aquí para las personas con Parkinson.

La visita al DR Lizarraga y el apoyo de los pacientes que nuestro grupo brinda es algo emocionante para la comunidad de Parkinson, espero y oro especialmente para que la comunidad profesional esté dispuesta a recibir capacitación en nuevos métodos para manejar el Parkinson.

Nuestro próximo evento tiene como objetivo ayudar a capacitar a profesionales para evaluar a los pacientes de Parkinson y recomendarles planes de ejercicio con el Dra. Koni Mejía de Lima. Haremos esto de manera práctica con pacientes reales y enseñaremos algunos ejercicios que ayudan a PWP.

Un agradecimiento especial al Dr. Lizarraga por ayudarnos en efecto a lanzar “Actívate – Liga Contra el Parkinson” de una manera más prominente. También el doctor me ayudó a pensar en algunos de los problemas y a definir nuestros objetivos Mientras organizando su compromiso de conversatorio (con la ayuda del hospital), el se a convertido en mentor para mi, incluso por correo electrónico. Gracias Dr. Lizarraga.

Todos los créditos fotográficos son gracias a FAVI BEJAR Fotografia. http://favibejar.com/


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How is your body when you are stressed?

Do you notice yourself feeling tense, for example in your shoulders? Does your headache? 

Do you feel tired or easily irritated? Does your stomach get upset or do you experience shortness of breath?

While everyone might be a bit different it is important that we notice what stress looks like and notice what happens in our body. Looking for the signals is the first step in dealing with stress.  This was one strategy the fabulous psychologist Rita Ames taught us in an interactive talk about dealing with stress and Parkinson’s disease. She got everyone talking, even those who seemed reticent at first.

Looking back these feelings of stress were with me at the January Activate meeting where I felt overwhelmed leading almost everything at the meeting. So I had noted this and delegated a few things and asked for volunteers. I was encouraged to have lots of help and glad to not be stressed during our February meeting. 

Rita did the main talk and Elizabeth, another volunteer and gifted communicator, encouraged us spiritually. We had a volunteer bring crackers and water and others helped with registration. This allowed me to be free to organise the meeting while carers could tell their side of the story to our registration helpers. The carers often feel isolated so they appreciated having someone to listen to them and show them love. 

The biggest surprise was Juan who I asked to report on our legal status and our plans to create a Non government organization (NGO) so we can receive donations. He shared how he had caught my contagious attitude and was now planning big things for “Activate – Liga Contra el Parkinson”. It’s very encouraging as his plans go way beyond my ideas. He also shared about his life with Parkinson, his struggle with depression and thoughts about how we can help others with this debilitating sickness. It’s exciting to see Juan’s approach changing.

Needs:

  • We may need a new venue in the future so please pray for this.
  • We need to have space for exercise classes too (could be the same place). 
  • Also pray we find a physiotherapist to evaluate people, so we can understand their needs before we start classes and track their progress.
  • Volunteers for Registration at events
  • Volunteers to distribute and hang posters to educate the public 
  • Volunteers for administration and translation, 
  • Our next meeting on the 3rd of March is with a Peruvian Doctor who lives in the USA, so we need to get an organising team going very soon. 

So thanks again to those who helped me this month. I couldn’t do this alone. 

I am still thinking of how to avoid stress. I’m really enjoying the work but the extrovert in me doesn’t want to go it alone.

What can you do when you recognise stress in your life?

En Periódico Online – Encuentro

I am in the newspaper again to educate society that exercise is so important to improve parkinson’s symptoms and improve quality of life. Estoy en el periódico otra vez. Todo para educar la sociedad sobre la enfermedad de Parkinson: El ejercicio reduce los síntomas y por lo tanto mejora la calidad de vida. Por favor poner comentarios en “Encuentro”. Gracias
Link to Newspaper: http://encuentro.pe/deportes/la-gimnasia-artistica-como-terapia-del-parkinson/