Useful Links
I hope there are links here that will be helpful and useful. These are ones that have come to my attention. Feel free to contact me about any other ones.
Funding
Sometimes you want to buy something to help you to live with your MS but it is out of your budget. I cannot give you a contact point or how to go about it but here are some organisations that might be able to help. I have not tried any of them but they might be able to help you
Gov.uk disabled students allowances
Re-defining disability
It is definitely possible to be disabled with a good quality of life AND have a bit of style. I hope these sites help you to make living your life more enjoyable and cut out some of the stress. If you know of any more please let me know.
Blue Badge Style The strap line is ‘Redefining Disability With Style’. A website that reviews hotels restaurants and theatres etc mainly in the London area. There are reviews on items for daily use that are elegant and suitable for people with a physical disability.
designed2enable The strap line is ‘Stay active with style’. A website that lists award winning, functional and stylish products for daily living for people with a physical disability especially if it is connected with mobility.
TRAVELSCOOT The Travelscoot (AKA The Trike) is an innovative mobility scooter with a funky design. It weighs about 18Kg and folds down to the size of a large golf bag. I own one and have travelled all over the UK and Europe with it. It has given me my independence, this is important because I need a walking aid to walk. I have written several blogs on the Travelscoot, look HERE. There is an office in the UK so please contact it to find out more.
TravelScoot experiences Good information from someone who bought a Junior sized Travelscoot De Lux
Freedom Wheelchair Skills The aim of Freedom Wheelchair Skills training is to help people become more confident in using a wheelchair, become less dependent on others and to show people how to overcome everyday environmental challenges.
Blogs
An Ordinary Girl with MS A woman born in 1990 diagnosed with MS in 2014 and writes about her life and passions
Its a Shit Business Online diary-cum-therapy-hole for a young(ish) man chronicling his life with Multiple Sclerosis – there will be jokes, too
One Man and His Catheters A good life (honestly!) with multiple sclerosis
Stumbling in Flats A funny old life with multiple sclerosis. This is a well written blog about the ups and downs of life with MS
Surviving Life’s Hurdles We all have hurdles we are fighting to survive no matter how big or small
Travelscoot Travels with My Reluctant Owner. Written from the Travelscoot’s point of view and not talking about author and MS. Started in 2017
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Facebook Groups
MSpals UK
the world vs.ms – this is worth looking at
secondary progressive multiple sclerosis
MS’ers meet ups in UK
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Very Useful MS Information
Multiple Sclerosis Resources MS resources as shown on ABLEIZE
Brainhealth Keep your brain healthy Our vision is to create a better future for people with multiple sclerosis and their families
Clinicspeak Clinic Speak is a resource for people with MS. It is an ongoing project by Professor Gavin Giovannoni as a development of his Clinic Speak blog posts on the Barts MS Research Blog.
Digesting Science Digesting Science is a set of activities that teach 6-12 year old children about Multiple Sclerosis. Scientific information is communicated in a simple and fun way
EDSS Calculator If you want too do your own EDSS assessment The assessment should take between 5-10 minutes to complete and will allow you to calculate your own accurate EDSS score.
London Underground Map If you need to use the London Tube system but cannot use the stairs then here is some very useful step-free information, stations with lifts etc.
OMS Overcoming Multiple Sclerosis Overcoming MS (OMS) educates, supports and empowers people with MS in evidence-based lifestyle and medication choices that improve health outcomes.
My Easy Suppers A web and Facebook page shoeing easy to cook meals. The author has MS and now has to use a wheelchair. The food looks scrumptious, great photos and worth investigating.
9 Hole Peg Test The 9 hole peg test is the gold standard for monitoring arm and hand function in clinical trials. This cardboard version gives you independence from your neurologist, empowering you to test and monitor your own disease progression.
Over 96% of Government Websites Hide Disabled Men and Women on Their Site Very interesting read on the pictures of discrimination of disabled people. This also applies to companies selling products for people with a disability – GRRR.
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Useful MS Links
This is not an exhaustive list of British Multiple Sclerosis charities and organisations.
The list is in alphabetical order (I hope
Mirandasmsblog A blog from Miranda who is the MS Nurse at the Bedford MS Centre. The aim of this blog is not to provide information about MS – there’s already great stuff available, ( I’ll post links to the best sites) – or to be first with the news, or to tell you things that you can find out about easily elsewhere.
Multiple Sclerosis International Federation Independent information from MS professionals worldwide.
Multiple Sclerosis National Therapy Centres. These about 50 independent MS therapy centres. They also help people with other debilitating diseases Parkinsons, Rheumatoid Arthritis, Cerebral Palsy etc for both children and adults. The services provided vary from centre to centre
Multiple Sclerosis Research Blog A blog site run by Professor Giovannoni and his team at the Barts and The Royal London Hospital. This is a blog for people with MS, it reports on and interprets research news and allows you to make comments. Well worth a read. Multiple Sclerosis (MS) is the most common progressive and disabling neurological condition affecting young adults in the world today. It is possible to write and submit your own blog but it does need to be connected with MS issues that will interest others. I have written a few guest blogs. As a result of one of them the MS introduced a 1K walk for people who cannot manage to walk at least 5.
Multiple Sclerosis Society Multiple Sclerosis Society The official website for MS with information about fundraising, events, research, life with MS, news and events and disease details.
Multiple Sclerosis Trust UK charity providing information for anyone affected by multiple sclerosis including symptoms, treatments and living with MS.
Shift MS Shift.ms is a social network run by its users where young MSers meet, share experiences and support each other.
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Mobility shops etc
Mobility and Disability Aids Impartial advice on selecting the best mobility aids including mobility scooters, rollators, walking frames, wheelchairs and home aids to keep you active and help you lead a fulfilling and independent life no matter your age.
Northable Equipment Plus Northable Equipment Plus is a New Zealand mobility shop. It can offer you the option of shopping for the disability equipment and daily living aids you need online, from a source you can trust.
It specializes in Mobility Scooters and offers the facility to hire mobility equipment. This is a big advantage and I wish more companies provided this service.
StairliftsReviews We aim to help consumers make an informed decision when buying a stair lift. It can be very difficult to get information about Disabled Facilities Grants from council websites. So, we developed our own database, the “DFG Finder” tool, which shows the Disabled Facilities Grant contact information for every council. You can see this tool under the Disabled Facilities Grant section of this page http://www.stairliftsreviews.co.uk/grants/
Stairlift Guru Information to help consumers make informed decisions when buying a stair lift
Handicare Stairlifts UK Handicare provide stair lifts, mobility fittings, help and advice to a wide range of people.
TRAVELSCOOT The Travelscoot is an innovative mobility scooter. It weighs about 18Kg and folds down to the size of a large golf bag. I own one and have travelled all over the UK and Europe with it. It has given me my independence, this is important because I need a walking aid to walk. There is no office in the UK so please contact their German/European Union office please refer to their webpage, click HERE
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Links that are not specifically MS
This is an arbitrary group of charities and organisations that I have come across
counselling-directory.org.uk Counselling Directory is a confidential service that encourages those in distress to seek help. The directory contains information on many different types of distress, as well as articles, news, and events. To ensure the professionalism of our website, all counsellors have provided us with qualifications and insurance cover or proof of membership with a professional body.
Connect Dacorum is a partnership between the business, public and voluntary sectors that actively participates in creating a better quality of life for all in the Dacorum (Hemel Hempstead) and surrounding area.They provide information and expertise on community involvement opportunities for organisations of all sizes and support our members in the delivery of their Corporate Social Responsibility objectives.
Enable Holidays Accessible holidays abroad for wheelchair-users, slow walkers, people with limited mobility, their families & friends. All accommodation personally audited.
festivalspirit.org A charity that takes disabled people to music festivals
Heathrow airport, guide for travelers who have special needs. This is part of the general London Heathrow guide but goes directly to information for passengers who need assistance, for example wheelchairs at at the airport terminals.
LDN Research Low Dose Naltrexone (LDN) is a drug that may help regulate a dysfunctional immune system.
misterwhat MisterWhat provides a comprehensive business directory of UK companies. The local listings are free to consult. You can find the company, firm, shop, restaurant, product or service you are looking for quickly and easily.
Rehab 4 Addiction It offers a free hotline dedicated to assisting people suffering from drug, alcohol and mental health issues. Rehab 4 Addiction was founded in 2011 by people who overcame addiction themselves. You can contact Rehab 4 Addiction on 0800 140 4690.
Therapy Directory Lists therapists who are registered with a recognised professional body or those who have sent us copies of their qualifications and insurance cover.
USA Tech Guide Guide to wheelchairs, mobility scooters, and assistive technology choices The TechGuide for all types of assistive equipment.
Wheelchaair foundation This is an American organisation
winejaw.blogspot a regular blog on news and wine run by Trevor Morgan
