Macmillan Coffee Morning

West Hagbourne Village Association are having a Macmillan coffee morning on Saturday 30th September at York Farm, York Road, West Hagbourne from 10.30-12.30.

My Thoughts on Being a Grandparent with a Disability

Source Multiple Sclerosis News Today:

I had always envisioned that I would be an active and healthy grandparent when the time came — not one with a disability. I was diagnosed with primary progressive multiple sclerosis (PPMS) in the summer of 2010, which also happened to be the same year my first grandchild was born.

I was ecstatic about being a grandma, yet apprehensive about how active I would be able to be. I also understood it meant that I might not be as helpful with the baby as I wanted to be. I would need to adapt my grandma skills to co-exist with my decreasing mobility and my increasing symptoms.

I am now blessed to have four beautiful grandchildren. They love me, and I, of course, love them. We play, use our imaginations, and I also sneak some learning in. It took time for me to get past my insecurities of feeling that my grandchildren were being shortchanged somehow in the grandma department. I had to work hard be able to move past my misguided feelings of inadequacy. It is not easy to be limited in a physical capacity while feeling as if you are not good enough. Read on. 

European Commission reverses decision on drug, following QMUL research

Source Queen Mary University of London:

A drug for multiple sclerosis (MS) has been granted a license by the European Commission, following evidence from Queen Mary University of London (QMUL) that it improves patients’ quality of life and is safer than previously thought.

MS is a degenerative disease of the central nervous system affecting more than 120,000 people in the UK and 2.5 million people globally, leading to disability and significant loss of quality of life.

The CLARITY trial, which ran from 2005 to 2009, was the largest ever trial of the drug Cladribine in people with relapsing MS, involving 1,326 patients. The results found that Cladribine was highly effective in controlling relapses, lesions in the brain and the progression of disability.

Cladribine also has advantages over other MS treatments in that it does not appear to be associated with severe adverse effects, including opportunistic infections and secondary autoimmune diseases.

For a number of reasons, including a perceived increase in cancer risk, the European Medicines Agency (EMA) rejected licence applications from the drug manufacturer, prompting a halt in commercial development of the drug in 2011. This was followed by the withdrawal of the drug from markets where it had been licensed (Russia and Australia) and ongoing trials were terminated.  Read on. 

Gut Microbes May Influence Multiple Sclerosis Progression

Source University of California San Francisco:

Researchers at UC San Francisco have identified specific gut microbes associated with multiple sclerosis (MS) in human patients, and show that these microbes take part in regulating immune responses in mouse models of the disease.

The new findings – to be published during the week of Sept. 11, 2017, in the Online Early Edition of Proceedings of the National Academy of Sciences (PNAS) – suggest that gut microbes may play a role in the neurodegeneration that characterizes MS. The authors hope the finding will help scientists understand the origins of MS and potentially lead to treatments, such as dietary changes or drugs based on microbial byproducts, that could improve the course of the disease. Read on.

 

Do you want to talk to your kids about MS but are not sure where to start?

Source MS Trust:

Do you want to talk to your kids about MS but are not sure where to start? Our resources for children and young people can make those family conversations a little bit easier. As well as explaining such a complicated condition in simple terms (very useful for grown-ups too!), the books feature real life experiences of other parents and children.  You can read or order publications here.

Please donate

Donations needed for raffle prizes for Quiz Night on Friday 13th October and Christmas Lunch please – things such as wine, chocolates and biscuits are good.

12 Ways Amazon’s Alexa Can Help People With Multiple Sclerosis

“Alexa” is Amazon’s talking service that acts as a virtual personal assistant. According to tomsguide.com, as part of the company’s Echo speaker system, the voice-activated device can pick out music tracks for you, operate other electical devices, create to-do lists, and of course help you shop. MORE: Acorda launches interactive MS awareness facts for Alexa As part of Multiple Sclerosis […]

The post 12 Ways Amazon’s Alexa Can Help People With Multiple Sclerosisappeared first on Multiple Sclerosis News Today.

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18 Common Home Modifications to Improve Life With MS

As your MS progresses, you may find it necessary to make some modifications to your home to make it safer and more accessible. Such alterations can vastly improve the quality of life for people living with the disease, allowing them to regain some independence and making life more comfortable. Here are some common home modifications you may want […]

The post 18 Common Home Modifications to Improve Life With MS appeared first on Multiple Sclerosis News Today.

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Important Things to Remember If You Have MS

If you or a loved one is living with multiple sclerosis (MS), it’s important to remember that you can always try to make your situation better. If your doctor says something like “there’s no other option” or “we have nothing more to offer you,” find another doctor. Doctors are humans, too, and they make mistakes and have differing […]

The post Important Things to Remember If You Have MS appeared first onMultiple Sclerosis News Today.

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Christmas Cards

Our new 2017 Christmas Card Selection.  All cards have the MS logo inside.  10 cards for £3.

Available now.  We also have a few from the 2016 Card selection.