I'm one of the developers of the YOP-X app, ask me anything!

Hi :wave:

My name is Michael, I’m one of the developers of the YOP-X app. Happy to answer any questions you have about the app.

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Hello Michael, you and the team have done a fantastic job with this App. It will be crucial for newly diagnosed people to access information that wasn’t available as readily previously - for those with YOPD plus partners and caters alike. Thank you.

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Good morning

This is amazing way to connecting people. People that don’t know where to start. Anyone that needs help and support there are so many people out there with YOPD and sometimes just need to read other people‘s comments to help them on their way for the day.

We all are here to help guide support each other at different times, it’s an awesome community. The friends that I’ve made though Having Parkinsons are now long life friends.

:pray::tulip::heart::butterfly:

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Hi Michael
Firstly thank you all so much for the incredible job you’ve done in putting this App together.
I am just wondering if there was any thought of putting in a section specifically for medications as that can be a big part of this journey we’ve found ourselves on.
Thanks
Liz

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Hey Liz

Yes I understand that medication can be an important part of Parkinson’s treatment. However, the difficulty there is the app shouldn’t be used as a substitute for professional medical advice, and so we don’t want to have information that is too specific but might not be the right advice for everyone.

That said, we’ve built the app to grow with more resources over time, so if Parkinson’s Australia develop resources specifically about medication, they can be brought into the app. So these suggestions about what information would be useful to you are really important.

Cheers
Michael

That makes perfect sense.
Thanks Michael

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A post was split to a new topic: App not remembering profile

I agree about meds not to provide advice but what the treatments are and some info about the contraindications.

Hi Michael

Loving the app and just tested it out briefly and found the following
Am I doing something wrong

Legal and employment

At the end of the Employment and Legal section Employment experience check list I cant preview the email or send it. The Screen goes grey when I try and preview and nothing happens with I try and email.

Did it for mental health, Sleep and the email was sent and received.

NDIS Wallet the support person template is that meant to go to an actual template it just goes to a guide for the support person.

Cheers

Hi guys, great job on the new app. I was beginning to wonder if there were many others with YOP in Oz. I’m sure the app will grow and become a great resource for all. Cheers Ty

Welcome Marz :blush: Let us know how we can build on the first stage of the YOP-X project.

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Welcome Sandra! :blush: Looking forward to learning how we can further target resources and support through ideas generated in this Discussion Group!

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Welcome Liz :blush: Yes as Michael mentioned, we can look at additional resources to add to the YOP-X website which compliments this App. The association between medication effectiveness and diet has been one topic raised that we could look at.

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Welcome Jen! :blush: Looking forward to hearing your thoughts on the App. Michael will follow up the Employment Checklist to see if it’s an issue with phone type.

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Welcome Ty :blush: Looking forward to hearing your thoughts on the App and growing resources for this community based on any needs identified.

Thanks I was on my ipad btw

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Definitely, thank you to you, the developers, contributors and Parkinson’s SA for all your hard work to get this up and running, it will assist so many.

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Hi, Thanks for this resource which I think will be amazing and much needed and appreciated. I’m sure when I read about the app, it said it was also for support people. Not sure if you plan to include specific info or discussion topics for supporters/carers. When you first open the app, the info you are supposed to put in is not applicable to carers. The app and particularly this forum look great for PD sufferers so I have encouraged my husband to sign up.

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Welcome Suzy :blush: Resources for primary support people will sit on the YOP-X website, and a national consultation for support people will commence next month. We welcome you to register your interest to participate at www.youngonsetparkinsons.org.au and we will be in touch soon.

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Hi there. Awesome app!

I generated and sent an email for my employer (to myself to test) and it came out like this:

Dear Sir / Madam,

This letter has been generated with the assistance of the Young Onset Parkinson’s Exchange (YOP-X), a government funded initiative to support people with young onset Parkinson’s.

Young onset Parkinson’s is very different to Parkinson’s diagnosed later in life, with many and varied symptoms.

Not everyone with Parkinson’s is the same, and not all symptoms are visible.

A diagnosis of young onset Parkinson’s does not mean that the person with Parkinson’s is no longer of value to the workforce.

When managed, young onset Parkinson’s does not necessarily have to impact employment.

There are many strategies that can support people with young onset Parkinson’s to remain in employment.

It is important for people with young onset Parkinson’s to continue to work and to remain a valued member of the workforce.

A person with young onset Parkinson’s is trying their best to understand, and cope mentally and physically with the condition and any treatment they are having.

People affected by this condition are still productive, functional and valuable, and simply require some readjustment, support and allowances for possible variation to their roles.

Adjustments to the workplace environment and to work patterns can be of great assistance.

The symptoms of young onset Parkinson’s are unpredictable, and there can be times of the day where an employee is most able and productive.

Regular rest periods can assist people with young onset Parkinson’s to maintain their abilities.

With a few modifications in the work environment and the way tasks are carried out, someone with young onset Parkinson’s can continue to deliver the same high standard of work.

There are services available to assist the work place with modifying workplaces and any equipment required.

The most debilitating issues with regards to my working capacity are:

- Fatigue
- Muscle stiffness
- Sitting for long periods
- Depression
- Anxiety
- Tremor

The time of the work day I find more difficult than others is:

- The afternoon
- When my medication wears off
- The middle of the day

Strategies or techniques that may be helpful to support me could include:

- Flexibility to work around my fluctuating symptoms
- Enhanced employer understanding of the impacts of young onset Parkinson’s
- Writing aids such as voice-to-text software to reduce the need to type
- Working from home

Yours Sincerely,

Tim

Is there any way this can be fixed? It will be very handy for my employer.

Cheers