MSA Trust

Stella Herbert- Embracing Life’s Journey: From Loss to Volunteering

Stella Herbert is one of our longstanding supporters and proud volunteers at the Trust. She kindly wrote and delivered this speech at our recent fundraising event- Cereals.

Hello, I’m Stella Herbert, and I am writing this blog as my husband Mike had Multiple System Atrophy and died in 2014 from Sepsis, complicated by his MSA.

Mike was a busy & fit – well ok – a bit of middle aged spread, but active ex-cop, who after his retirement aged 50; was working in the Notts Police Control Room as a Dispatcher and Tutor. His first symptoms (had we known at the time) were horrific violent nightmares; bad bad snoring, coughing & choking when he ate. We bought a new car, and Mike struggled with the clutch (A traffic cop who can’t drive? )– and that was really what started our quest to seek a diagnosis. MSA is such an unusual illness that we were passed from pillar to post for test after test, to see what the issue might be. After his diagnosis I was thankful that it wasn’t a stroke, or cancer and that we would sort it. How wrong I was.

We were so blessed to be referred to Professor Marios Hajivassilou at the Hallamshire Hospital, Sheffield, and his excellent specialist Nurse, Diane, as well as MSA Nurse Katie Rigg , who I saw every 3 months and Mike saw every 6 months.

His progress was as expected, on a plateau and then deep troughs, with changes in treatment as the condition worsened. He had to give up the job he loved and we moved out of our house when he was unable to walk or stand properly. We moved into my mum’s bungalow where we were grateful for a Police Benevolent Fund grant to convert a wet room for us to use. By this time he needed help dressing, eating, moving and his speech was virtually unintelligible- BUT his mind was sharp. He liked his puzzles and Suduku to keep himself occupied as well as motor-racing and cycling on the TV. We also had an amazing Specialist Neuro Physio Sally, who came every week to our house and looked after Mike , she was so much more than a physical therapist, her expertise helped us with all sorts of issues, medical and practical – indeed we are still good friends to this day.

Mike was prone to infections; chest and urinary, and fought them off every time, but the last one took him in 24 hours.

Death is not an easy subject, but one you can’t hide from.

Mike as a Fatal Accident Investigator knew exactly what he did and didn’t want for his end of life care. Therefore it was much more straight forward for me when the nursing staff began to explain that was the road we were heading down. The MSA nurses were very helpful about being realistic about this pathway as were the Hospice staff. It helped us accept and understand the situation we had been dealt. Where would I have been without them?

Karen, and all her colleagues at the Trust but especially for us, Katie Rigg and the MSA nurses have been so brilliant, with both the on line and in person support during the 4 years that we fought the illness together.

The information about MSA on line is very scary when you first do your research, like you do, but the Trust provided us with packs for our GP and other Healthcare professionals who may not have encountered it before. It was through the on line Forum that I was able to chat, exchange symptoms and solutions and eventually obtained a vehicle ; a battered , worn and 4th hand Van. This meant we could go out to the Coast, meet Mike’s grandkids at the park, go to a dental appointment, and see something other than the bungalow we lived in. He could also get to one weekly session of daycare at our local Hospice, meaning I got a few hours off. The van came from Sue in Bicester, who’s husband had recently died of MSA, and who knew exactly how hard getting that right vehicle was. Again, I am still in touch with her today and she and her daughters come to the MSA Summer Garden Parties and Tree Planting. Mike and I even managed one last weekend trip to Llandudno the year he died for his birthday and our anniversary with his brother, thanks to a very helpful hotel, and had an amazing time remembering their boyhood holidays there.

But to be honest it was after Mike had died when I really knew the true worth of the MSA Trust.

Mike and I were both Rotarians of the Sherwood Forest Rotary, on the doorstep of Thoresby Park. After Mike’s death, I was absolutely delighted to volunteer at the Tree Planting days and Summer Socials held at Thoresby.

I am personally honoured to assist on those dark, cold, often wet, winter tree planting days, to guide people to Sarah’s Wood, and chat about my MSA journey and theirs. This relationship continues today.

I am delighted to say that one of the first trees planted at the far back of the wood was by me, for Mike, and his is one of the first bricks in the path. Our Granddaughters and Mike’s daughter Katie come here often, the girls have planted many trees, and support me and the MSA Trust whenever they can.

I know from speaking to the many families who come to the MSAT events year on year, just how valuable this charity is and the importance of Sarah’s Wood. The wood is a place to visit, to chat, remember and maybe weep a bit, but know we are all in the same boat and understand the journey we have had or about to take.

So as I close, please consider donating or volunteering for this fabulous charity, that supports people suffering from this rare illness- that takes brilliant people, for no reason. Or join us at Sarah’s Wood for the Trust’s annual Summer Social or in November for the Tree Planting day. We will ensure the trees are planted with care and nurtured for more families to come and remember their loved ones forever.

 

 

 

 

Thank you Stella for your continued support and dedication to the Trust.

 

 

 

 

 

For more information on volunteering opportunities at Sarah’s Wood please contact a member of our team at fundraising@msatrust.org.uk


Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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Mrs Jane Lightfoot
Mrs Jane Lightfoot
9 months ago

Stella, I remember you well from the old MSA Trust forum. I have bought our brick, but have yet to visit it!
Well done for the work you do at Sarah’s Wood. X


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