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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