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Together, We've Got This 🩵

Updated: Feb 15

Having been diagnosed with Motor Neurone Disease in March 2022, there was and still are very few places where you can find what is out there to support you. So I wanted to create a space where I could share all of the things I have found useful. I hope they help you in supporting you in the early days of diagnosis and to help you maintain a quality of life.


Motor Neurone Disease Association (MNDA)

MND Nurse/MND Coordinator

Occupational Therapist

Neurologist

Respiratory Unit


Financial


Personal Independence Payment (PIP) - previously known as Disability Allowance

Pensions

Life Insurance

Will

Power of Attorney


Travel


Insurance (info received from MNDA)

Blue Badge for disabled parking

Disabled Persons Railcard

APCOA - SouthEastern train station parking

Bus Pass


Going Out


Access Card

Theatre Accessibility

Cinema card


Technology


iPhone Voice Control

Following a recent visit from environmental control, I was informed about the impressive technology offered by Apple for iPhone users. For anyone with restricted mobility, iPhone users are able to activate the voice control function which enables you to navigate and use your phone without having to touch it. Having struggled for a few months to not only pick up my phone, but to use it for social media, messages, telephone calls et cetera, this technology has been an absolute game changer. It provides me with a quality of life and independence. Further details can be found here.



Support Groups / Organisations


Support Groups / Organisations


Clothing


Footwear


Mobility Aids


Cool Crutches


I hope you have found the above helpful and I will continue to update with anything as I discover it. If there is anything I have missed, or if you discover other useful information that you would like to share, please get in touch so I can update the information so it remains up-to-date.


Please get in touch if you have any questions, I am more than happy to help.

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