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.

Blogs

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

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.

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.

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Useful MS Links

This is not an exhaustive list of British Multiple Sclerosis charities and organisations. I’m sure some have been omitted, please tell me and I will add them to the list.

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 Answers An American organization that answers questions. This link directs you to the Multipe Sclerosis section. The information looks to be very detailed but it is hard work. There are no pictures or ‘white space’ that make it easier to read and pick out the important points.

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.

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 Support Multiple Sclerosis Support Centre.

Multiple Sclerosis Trust UK charity providing information for anyone affected by multiple sclerosis including symptoms, treatments and living with MS.

Pediatric Demyelinating Diseases Foundation It began as a Facebook group called Pediatric Multiple Sclerosis Alliance whose purpose it was to connect families of children with Multiple Sclerosis.

Positive About Multiple Sclerosis  This is a website dedicated to giving information to those who have MS, those affected by the condition and people who may just want to know more about it.

Shift MS Shift.ms is a social network run by its users where young MSers meet, share experiences and support each other.

Sleep problems Individuals with MS are twice as likely to suffer from reduced sleep quality and up to 3 times as likely to experience sleep disturbances compared to the general population. Our

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Mobility shops etc

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 stairlift. 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/

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. Theer is no office in the UK so please contact their German/European Union office please refer to their webpage, click HERE

WAV Compare

Find and compare Wheelchair Accessible Vehicles! You enter your selection criteria and see what is available

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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.

dchaservices.co.uk Providing people with  home support services. D.C.H.A. Services Ltd is an approved member of the Small Community Services (SCS) Associationhttp://www.aid4disabled.com/wp-admin/post.php?post=4600&action=edit

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

Heathow 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.

reachoutplus A charity based in the Northern Home Counties. It supports people – especially young people and those with disabilities – to overcome exclusion and discrimination, develop their skills, broaden their experience and achieve their God-given potential. They are based in Hertfordshire and Bedfordshire and are expanding services into Buckinghamshire, Northamptonshire and North London.

trevormorganproject99 Patrick has known Trevor for many years, his blogs are thought provoking and they are entertaining reading.

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