Community created to benefit the lives of those living with Parkinson's
Person with Parkinson’s & Partner & Carer for Russ, diagnosed in 2004 Company Director and Co-Founder, volunteer.
Person with Parkinson’s & Partner & Carer for Charlotte, diagnosed in 2012 Co-Founder, volunteer.
Person with Parkinson’s, husband to Helen, diagnosed in 2017 Project Manager Volunteer.
Wife & Carer for Richard Social Media Manager, volunteer.
Parkinson’s Concierge is not a charity, we are so passionate about the Parkinson’s community we support and improving the quality of life of all people affected by Parkinson’s worldwide. We are the VOICE & “go to” place for everything in the world of Parkinson’s.
Here to provide support & information to all people affected by Parkinson’s we:
Campaign, Raise funds, Get involved & included. We are: Awareness creators, Public speakers, Research advocates and Patient engagement professionals.
Please contact Parkinson’s Concierge to speak to a fellow Parkinson’s sufferers, or write to us at any of the following social media platforms, or by email.
Why not join us for any of our upcoming activities?
Parkinson’s Concierge and ReMeLife welcome you to our pages on information and practical help for people newly diagnosed with Parkinson’s. Here at Parkinson’s Concierge and ReMeLife, we firstly want to say “Hello” and we hope you find our platform useful and full of resources to help you live well with Parkinson’s.
Reassuringly, you are not alone. There are approximately 60,000 people a year newly diagnosed with Parkinson’s across the world, with an estimated total of around 10 million patients currently living with Parkinson’s globally.
If you, or someone you love, have just been diagnosed with Parkinson’s, you probably have a lot of unanswered questions about what this means for you and your family. It is easy to assume that everyone’s Parkinson’s is the same. Invariably, this is not the case, as every case of Parkinson’s is different. Here at Parkinson’s Concierge and RemeLife, we know from personal experience, that every person with Parkinson’s encounters different symptoms at different times. Likewise, they may have different questions and concerns at different times.
There is a risk at the time of diagnosis of being given too little information, irrelevant information (at that time) or indeed, too much information. You may have come away from your recent hospital / neurologist appointment with more questions than answers! Our aim, at Parkinson’s Concierge, is to provide a resource bank of information, and a caring, friendly voice to provide those answers. Based on our “lived-in” experience, we can offer tips and tricks to help people with Parkinson’s find answers to their current questions, become well informed, and to be able to make choices to live well with Parkinson’s. All our advice comes directly from real people living with Parkinson’s, or the numerous partnerships we have with Parkinson’s nurses, neurologists, consultants, and many specialists within the medical field. We also partner with companies who offer products or services to improve the quality of life for those of us living with Parkinson’s.
Our personal experience shows that many of these questions and concerns are quite common to a lot of people newly diagnosed, with a long-term neurological condition such as Parkinson’s. Help with these issues may be covered well on other websites, and we believe drowning a newly diagnosed person with a deluge of the same information has, in our experience, made us even more confused. People with Parkinson’s often become lost in too much detail! To avoid this, one way of sourcing information and contacting a Parkinson’s human is through Parkinson’s Concierge. If we do not have the answer’s, we will gladly signpost you to organisations who can help you on your Parkinson’s journey.
A lot of questions may be of a personal nature. As people with Parkinson’s ourselves, we have come across many websites which concentrate on the same issues, and provide the same textbook answers, sometimes creating a negative vibe. Here at Parkinson’s Concierge and RemeLife, we have created an environment, where you can gain positive help and advice. With a lot of practical tips and tricks that we, ourselves, have found beneficial in living with Parkinson’s Disease. This will enable us to offer all the resources, the healthcare and clinical experts available to us, and help us all to deal with, and live with Parkinson’s. We really hope you find Parkinson’s Concierge useful, and if you have some helpful advice you would like to share, please get in contact. Everyone with Parkinson’s has a different and useful story to tell.
The Next Steps
It may take some considerable time for your diagnosis to settle in, everybody is different in this. However, once you feel able, we are here for you at Parkinson’s Concierge. We have personal experience and are here to support you, please do not hesitate to contact us for a friendly chat.
Feel free to explore some of the national association’s websites lower down this page. If you did not find what you were looking for there, please come back to Parkinson’s Concierge.
Talking to family members, especially your own young children about being diagnosed with Parkinson’s, is a major concern for newly diagnosed, but extraordinarily little help is out there. Please contact us for help and support.
In the UK (and other countries across the World) you are legally obliged to notify your National Vehicle Authority about your diagnosis of Parkinson’s. Most people with Parkinson’s continue to drive independently for many years. You may be entitled to a disability badge to help with parking within your country e.g. a Blue Badge in the UK. Contact your local authority for further guidance.
Questions regarding your future will no doubt be on your mind. A diagnosis of Parkinson’s was not something any of us would have chosen, and we all understand how this has the potential of changing our future hopes and dreams. Parkinson’s is an incurable, progressive neurological disease, which if we are completely honest, is no fun. BUT it is possible to continue to live positively and well. Please contact us for further guidance.
Questions around employment and working with Parkinson’s is another under-reported issue which throws up many questions. Please contact us for further guidance.
Being diagnosed with Parkinson’s or any long-term neurological condition throws up many emotions and it is OK to feel NOT OK! Beware, it is not always easy and if you are struggling, do get in touch with us or other organisations we recommend.
Relationships and sex are hardly ever discussed around Parkinson’s. if you are struggling, do get in touch with us or other organisations we recommend.
Being diagnosed with Parkinson’s may cause financial worries. Parkinson’s Concierge can point you in the right direction, please contact us for help.
Many people newly diagnosed with Parkinson’s, are not aware of the many different types of clinical research that goes on, trying to find better treatments and a cure for Parkinson’s. Often People with Parkinson’s wish they had been better informed at an earlier stage about how they can get involved with research. Parkinson’s Concierge can sign post to organisations who carry out Parkinson’s clinical research.
Parkinson’s Concierge supports ALL people affected by Parkinson’s
“We will be seen and heard” as a voice for people with Parkinson’s
We listen & Care
We campaign for what is rightfully ours, discounts on products and services, benefits, employment rights. Providing factual and helpful information.
We are not Doctors or medical professionals and will not advise on medication.
WILL YOU JOIN OUR COMMUNITY?
Together, We WILL make a difference together by building relationships with people and organisations who are able to implement change and move forward to helping offer a better quality of life to people affected by Parkinson’s and hopefully to finding a cure.
What Support do we give?
Advice on Health & Well Being Health, diet, alternative Therapies, exercise.
We promote positivity and “Patient Centric Healthcare”, for which we were awarded the ESPCH Patient Engagement Award 2020.
We have carefully identified Products and services to improve the quality of life that enable you to “live well” with Parkinson’s. We signpost to these businesses/specialists.
We connect with the various health & well-being experts, businesses & medical communities to partner & make a difference together.
We are always looking for Partners to help us on our journey these organisations must believe in us, our idea, and want to help us make a difference to improve our quality of life, increase awareness of what it’s like to live with Parkinson’s.
Our partners provide and offer advice on:
We are patient engagement experts
We have also made a film called “Stages”, with famous actors, playing our parts.
We would like the opportunity to tell our story at any conferences involving patient engagement.
Our ideas include promoting awareness of Parkinson’s to GP’s, retailers, holiday companies, airports, rail networks, supermarket chains, schools, colleges, universities, care homes, hospitals and more……
To create an understanding of the problems people with Parkinson’s and people affected with Parkinson’s face daily and the things that healthy people would not know about and take for granted.
We ask you any services and product you have found beneficial to people with Parkinson’s?