Welcome to the new Multiple System Atrophy Trust website
We’ve pulled together a wide range of information we hope will be useful to you, whether you have MSA yourself or you are a carer, family member or friend – all of which you can share with people you would like to be better informed either by downloading or forwarding pages of the site. We’re very happy for you to do this! We’ve also introduced some new elements, such as our online support community, designed to make it easier for you to get to know other people experiencing life with MSA, as well as a map showing you where our regional support groups are.
Many people have told us, including in our recent membership survey, that they want multiple system atrophy and the Trust to be more visible, for more healthcare professionals and the general population to know about MSA and to understand what it’s about. We’ve given our Facebook and Twitter icons a dominant place on the site so you can help spread the word on MSA to your networks – we can work together at raising its profile.
You’ll also find throughout the site stories and photos of real people – individuals, couples, families.
We hope their stories, and the information in this site, help you to live your own life with MSA. Please do contact us if you would like to know more.
Amy Smithson
Hi – I really like the site, especially the details about how to get more people, and the media, more aware of MSA. Hope to help spread the word!
Reply
February 18th, 2011 at 6:19 pm
Brian Palumberi
My mom just passed away from this brutal disease on February 19th. She spent 8 long years fighting yet never complaining. Death is never a pretty scene however , this was particularly devastating not only for mom but for all of us who loved her so much.
Rest in peace Mom
Reply
Catherine Missin reply:
I just wanted to send my love to Brian and his family x
I have an Uncle currently suffering with MSA. It is so totally heart breaking to watch the degeneration, at the age of 61. He has always been a man with immense confidence and charisma, that just had the natural ability to hold the attention of everyone in his company. To see him as he is today is hard enough and the whole family is just dreading the years ahead.
April 27th, 2011 at 9:20 pm
March 17th, 2011 at 3:48 pm
martin carr
My wife died last June after after suffering with the condition for 9 years. I nursed her all the way through – lucky though she picked up a chest infection and just went to sleep
and never woke up. From 5 years she lost mobility, then speech went but we had ways of communicating. Still not got over it, I knew her from 1965 and got married in 1972.
Rest in Peace Maggie
Reply
April 16th, 2011 at 8:55 pm
Starlight Memories
Hi – My Dad was diagnosed in December 2010, by this time he had been through a battery of tests, he was so tired, don’t think it wil be long now. Dr McKey Manchester Royal Infirmary thank you for treating my parents with dignity and respect. Thank you for this site, slowly but surely I am learning about an illness that is robbing me and my family of my dad. I intend to spread the word where ever I can. Education may lead to a cure. Love you dad x
Reply
May 24th, 2011 at 9:32 pm
moderator1
Dear All,
Thank you for posting. Do feel free to join the MSAT forum to share your experiences and let us know how we can help and support you. MSAT Nurse.
Reply
May 31st, 2011 at 8:55 am
LYNDSEY
My father-in -law is 88 and was diagnosed with MSA a month ago after several months of being very unsteady on his feet. He fell whilst out shopping and was taken to A&E. By chance a visiting specialist saw him and diagnosed MSA. He was discharged from hospital a month ago and is at home and full time carer for my mother-in-law. Very quickly things have gone downhill and we are very worried. So far there has been no follow-up from the hospital and his GP has not been near!
We would appreciate any advise as to what path we need to go down to get some help.
Reply
June 23rd, 2011 at 7:28 am
Isobel Cherrington
My husband was formally diagnosed with this condition in 2008. However, he had been showing signs of something wrong for a couple of years before that. Its becoming more difficult for him to manage MSA and all its symptoms and the strain on him and the family is enormous. However, we intend making the best of things and are off to Menorca with our daughter, son-in-law and grandson for a week on 1 July 2011. Could not manage without their help. Just hoping my hubby manages the heat as he has always been a sun worshipper but this condition sadly appears to have affected his capacity to cope with the sun but he won’t give in!
Reply
June 27th, 2011 at 4:49 am
Pat H
December 27, 2011 was the 13th year of my Dad’s passing. Dad was originally diagnosed in 1989 with Parkingson’s: his symptoms never included the customary trembling/shaking – just balance issues – where he would be standing one minute then on the ground with his walker tilted beside him – all without notice. In November 1998, our family learned he did not have Parkinsons – but MSA = something that seemingly mimicked Parkinsons – but then showed its true force of this disease causing his health to decline so rapidly. At Christmas 1998, he was unable to open his eyelids although we did see him try, and December 27, 1998 he passed in his sleep in his 76th year. It is a terrible disease and the health decline is sudden. My heart goes out to anyone who is currently suffering with this, and to those who also have lost family &/or friends due to this disease.
To my Dad, we miss you, and may you Rest in Peace.
Reply
December 29th, 2011 at 8:52 pm
Sinead
Thanks Katie for coming to Limerick last year. ernest and I found it helpful.
Reply
January 11th, 2012 at 3:39 pm
Linda
My Mum was diagnosed on 13th Dec 2012 but was originally diagnosed with demencia . Her health has declined so fast it’s terrible. Her Doctor has never even heard of this condition. Any advice would be much appriciated, So sad to read all the above blogs.
Reply
January 6th, 2013 at 3:47 pm