Donating to Multiple System Atrophy Trust!

Hello Everyone!

As you may know from my last post, I donated to Multiple System Atrophy Trust  as my January 'deed' to begin the new year. Donating to this charity, and using my blog to promote the disease and the work of the charity is extremely important to me, and is something I feel should be done more often, whichever the disease or supporting charity for many reasons.

With the money that we donate to Multiple System Atrophy Trust, they are able to employ a small team of staff and specialist nurses who provide a range of services to Multiple System Atrophy sufferers and carers across the UK.

The services that the trust are able to offer free-of-charge as a result of the public's support are as follows; 

• Telephone and email advice service offering support and information for people with MSA, carers, health and social care professionals
• Guides and fact sheets on a variety of aspects of living with MSA
• Regular magazine
• Regional and online support groups
• Comprehensive website
• Education sessions for healthcare professionals
• Latest MSA research updates
• Contact scheme for people with MSA and carers
• Campaigning and advocating on behalf of people affected by MSA
• Advice on organising or becoming involved in a fundraising event

Information on the trust can be found on their website, which you can access here: http://www.msatrust.org.uk/the-trust/

"Multiple System Atrophy Trust is the UK’s main support and information service for people who have multiple system atrophy (MSA) – a rare neurological disease with no known cause or cure.  As well as helping people who have MSA, we are also there to support families whose lives are affected by MSA as well as carers and health and care professionals who look after and treat people with the disease.

Our vision is a World Free of MSA. We are committed to making this happen by funding research to find the cause of, and one day a cure for, MSA."

By donating and promoting this charity as much as possible, we are able to help the trust achieve their ethos and aims, and show support to sufferers of MSA and their carers throughout their experience of the disease.

Once again, thank you for your continued support of '12 Months of Giving', and I will see you in early February to tell you all about my 'good deed' for the month! 

Be Good!

Kizzy :)

January - Donating to Multiple System Atrophy Trust

Hello Everyone!

Welcome back to '12 Months of Giving.' I hope you all had a lovely christmas, and an amazing new year! 2015 will be filled with more 'good deeds', and more ways to do good!

When reflecting over the last year, I realised that for me, 2014 should be summed up with a positive perspective. I would like to think that 2014 for me, could be summed up with the optimistic phrase; "When life gives you lemons, make lemonade!" The idea that after experiencing trials and tribulations, you can use the experiences to improve someone else's life and situation has always suggested some sort of strength to me. The opportunity to become stronger after an experience that should (could) make you feel weaker has always brought me comfort and some understanding in tough experiences. By taking this experience, and using it to better yourself you are refusing to be defeated by a situation, and although you sometimes need to have a 'meltdown moment' (...we all do), you can pack your suitcase back up, checkout out of 'head-mess hotel', and use your experiences to learn and take on new challenges.

With this in mind, this month I wanted to continue to donate to another charity that could provide support to individuals who find themselves experiencing challenges that have once been relevant to me, or to people within my life. In memory of a late family friend, for my January 'good deed' I have donated to the 'Multiple System Atrophy Trust.'

This charity works with Multiple System Atrophy sufferers in order to provide them with information about their diagnosis, teach them how to living with MSA, and how to spot signs for the early development of the disease. Multiple System Atrophy is a progressive disease, and therefore the symptoms that sufferers experience are likely to worsen over time. Therefore, the Multiple System Atrophy Trust is vital in informing sufferers and carers of how to live with the disease, and to cope with the progression of the disease's symptoms.

The Multiple System Atrophy Trust website, which you can find here: http://www.msatrust.org.uk/, is able to inform individuals of what MSA exactly is: "Multiple system atrophy (MSA) is a progressive neurological disorder that affects adult men and women. It is caused by degeneration or atrophy of nerve cells in several (or multiple) areas of the brain which can result in problems with movement, balance and automatic functions of the body such as bladder and blood pressure control."

By using the trust's website to research the symptoms of the disease further, I have learnt that there are three groups of symptoms that reflect the three regions of the brain that may be involved in the disease: The Basal Ganglia causing problems with movement (Parkinsonism); The Cerebellum causing poor balance and co-ordination; and The Brain Stem causing autonomic problems such as poor bladder and blood pressure control.

Examples of symptoms with these three different groups are as follows;

Parkinsonism

• Feeling slow and stiff when moving
• Difficulty in starting to move
• Writing becoming small and spidery
• Difficulty turning in bed

Cerebellar

• Feeling clumsy, dropping things
• Finding it difficult to fasten buttons
• Feeling unsteady in crowds
• Unable to balance without support
• Difficulty writing
• Slurred speech

Autonomic

• For men, difficulty with erection
• Bladder problems
• Feeling dizzy or fainting (blood pressure problems)
• Pain around neck and shoulders (known as ‘coat hanger pain’)
• Constipation
• Cold hands and feet
• Problems with sweating control

Other problems

• Weakness of arms and legs
• Poorly controlled emotional response, laughing or crying
• Restless sleep
• Nightmares
• Noisy breathing during the day, snoring at night
• Unintentional sighing
• Weak, quiet voice
• Swallowing problems, difficulty chewing, choking episodes
• Eye muscle weakness which may cause blurred vision

By donating to this charity, you are helping to fund the work being carried out to give support to sufferers and carers experiencing this disease, allowing individuals diagnosed with the disease to be educated about how their disease may progress, and how to cope with the progression of Multiple System Atrophy.

Once again, thank you for your continued support of '12 Months of Giving.' I will see you again later this month to share with you the details of how the Multi System Atrophy Trust supports individuals experiencing the realities of this disease, and the resources they can access through this charity.

Be Good!

Kizzy :)