Parkinson’s Vision 2020 conference (putting the focus on YOPD) is taking place in Leicester at the end of April – pop over to the website for all the details and how to get tickets.
This is the first conference with an emphasis on those diagnosed with Young Onset Parkinson’s Disease (YOPD). Young Onset ‘officially’ refers to those diagnosed before fifty. The emphasis might be on young onset, but everyone is welcome to attend.You won’t be asked for ID to prove your age in a reverse ‘buying a pint scenario’.
So why the need for a conference with the emphasis on those diagnosed at a younger age?
The conference aims to discuss the worries, concerns and challenges faced (in the main) when people are diagnosed at a younger age and Parkinson’s is thrown into their lives. It is such a complex misunderstood unpredictable disease difficult at every age. But there are differences.
The cut off age could be continually discussed. It is not a debate about whether people are 90 but young at heart, or 25 and old before their time. It is not about hobbies or fashion – garage music, sherbet fountains, comfy cardis, and slippers can be enjoyed at all ages.
However, from a practical, financial, social and medical point of view there are usually life differences between a 35 year old and a 70 year old – although please read everything with a sub note of: there are always exceptions to the rules and exceptions to the exceptions.
From a medical point of view those diagnosed at a younger age, are likely to be living with the disease for longer, giving symptoms more time to develop/worsen as the brain cells degenerate. They are also likely to suffer the side effects from long term use of the PD medication, and will require more advanced treatments. Although disease progression varies, so there will be exceptions.
Most people start on the property or career ladder and have children at a younger age. Obviously there are exceptions to this rule. However it is more likely to be a 35 year old, rather than 70 year old who will be changing nappies, attending parents evenings, attempting the parents race at sports day, ironing shirts, earning enough to support a growing family, or holding their own in an all day brain storm with the boss when at times they can’t hold a pen.
Also, Keeping up friendships and relationships with peers who are still living their lives at warp speed. Whilst living with a condition which is trying to stop us at every turn and disrupt our lives,
Coping with a disease so complicated, unpredictable and misunderstood is difficult at every age.
The conference will be an opportunity to meet up with old and new friends, many of whom, up until now, we have only met virtually. Hopefully everyones profile picture is up to date.
It will also be an opportunity to meet the movers and shakers (sorry) who are researching to advance a cure, and those with the information and advice to keep us living well and managing the condition until that day comes.
So, I look forward to an interesting and informative weekend, interspersed with some social chit chat and cake. Pop over to the website for more info