By Dorothy O’Donnell
My husband Bert of 60 years retired from central Scotland Police in 1991. He had been a police officer for 28 years and was always very active. Bert started working for himself running a successful gardening business until he handed it over to our son who had recently retired from the fire and rescue service.
Retirement for Bert meant he could spend more time on the golf course and enjoy his love of Scottish dance music and playing his much loved fiddle with Stirling Strathspey and Reel Society Orchestra, and various concert parties. Bert had good health over the years and rarely visited a doctor. It was at his accordion and fiddle club that he first became aware something was wrong when he couldn’t keep his bow on the fiddle strings. A visit to his doctor resulted in her prescribing Valium as she thought it was nerves, despite having played on stage for years! The Valium did not help the shakes.
When his speech became distorted, Bert had his second visit to a doctor which resulted in another doctor referring him to a neurologist. An MRI scan of the brain showed deterioration of the cerebellum, an area of the brain that controls coordination, mobility, balance, and speech. Bert’s neurologist pulled no punches when he explained to us what Bert’s condition entailed and the problems it would inevitably bring. Nerve cells in the cerebellum had deteriorated and were dying off. He told us there was no cure and no medication that would help! Quite a brutal diagnosis and hard for us to take.
Because we had been advised that no medication would help, we gave acupuncture a try, but after 16 weeks, we stopped as there was no obvious improvement.
As Bert’s coordination and mobility worsened, we adjusted our thoughts and looked to the future focusing on what he was still able to do rather than focusing on what he was no longer able to do. Because of his lack of balance, in 2016, we parked Bert’s electric bicycle and replaced it with an electric four-wheeled mobility scooter. It was great that he was independent once again (sometimes with me following behind on my electric bike). We managed a further two cruises with Bert using yet another set of wheels, this time a walking frame with a seat on it, which came in handy to carry his dinner plate from the buffet.
COVID-19 came as a shock to all of us, especially for us when a doctor, that had never met Bert, phoned us at home to say that Bert should be put on the DNR (Do No Resuscitate) register, because if he had to be resuscitated, he would not survive! It was a real body blow and extremely upsetting.
Following Bert’s last consultation with his neurologist four months ago, Bert’s condition has now been classified as Multiple Systems Atrophy. He is battling this rare condition with all its limitations, but he continues to laugh a lot. This is usually because I don’t always understand what he’s trying to say and get the missing word wrong! The blame lies with me and my hearing loss! Bert never complains about his condition, and just gets on with what he does so well like sudoku, crosswords, and solitaire on his iPad.
So, our life has changed since MSA arrived but with the continuing help and support from our two wonderful sons and their caring and loving wives, we will continue to deal with this awful illness as best we can.
Bert sends his best wishes to his fellow sufferers here in the UK and with all of you in the USA…Multiple Systems Atrophy has no borders where this disease is concerned.