Noelle Gibbon’s very real and moving account of living with PSP was split into two parts. It describes very well the experience of PSP for her, her mum Ida and her family. Part 1 covers the long journey to getting a diagnosis of PSP.
Our “Journey” a word that I hate using to describe this -mine started back in 2005. Ida Gibbons, my mum, knew she wasn’t herself. Ida used to love going for long walks which she would do daily but she found herself bumping into things, getting confused of her whereabouts. Some people would pawn the idea off as forgetfulness in her old age or the “ole legs weren’t as strong as they used to be” but she knew something was wrong. She went to our family GP. Mum has a history of vertigo so the GP treated her for this. We all thought at that point it was a balance issue.
As time went on Ida was falling a lot more, I vividly remember getting woken up one morning by a loud thump I jumped out of the bed and opened my bedroom door. Mum was on the bottom of the stairs and she had no clue what had happened or how she got there. The bruises were getting very prominent as she was just tripping up daily, misjudging space when she was putting items on the table etc. We wouldn’t have had any cups left with the rate she was going! Dad went to the doctor- again! The GP gave her anti-depressants and to be sure he sent her for a MRI/CAT scan.
Mum went off on one of her walks in a park close by and bumped into a friend of twenty years. Her friend couldn’t believe what she was greeted with, this woman thundering towards her with no co-ordination and the voice of a woman who had one too many vinos. Her friend quickly suggested that she go to her GP and get another opinion.
That second opinion, lead us on the path to a diagnosis. He referred mum to a neurologist near our home in June 2009. Nothing showed on the scan. The accidents were still happening and her voice was changing. She had a very prominent slur and spoke in a very soft tone. They went for more CAT scans and in the October of 2010 the neurologist explained to us that Ida’s cerebellum was that of a much older woman and there was significant change between the scans. He diagnosed her with Cerebellar Syndrome. Dad had been working less- 3 day per week with the prospect of fully retiring by the end of December. My brother, Gareth and I were both working, we helped when we could. We didn’t want to leave her on her own in the house. We got a panic alarm installed that she could wear around her neck and she was given strict orders not to cook. “You can imagine for my mum, the doting housewife who had the family dinner on the table pretty much every night for over 40 years this proved extremely difficult”.
Then the day came that everything changed….. It was the day after Stephens’ Day, Gareth and I were ‘Minding mum’. I woke up to my mobile ringing. It was my neighbour across the road saying that mum had ventured out of the house alone and was at her house confused and frightened. Over the course of the next few days things went from bad to worse.
We got in touch with her neurologist and they told us that we could not get an emergency appointment until early March! To us, this was outrageous! We called our family GP and he came down to our house a few times but she just wasn’t herself and getting progressively worse. Eventually, we found out when the neurologist was on call and we all packed ourselves into the car and off we went to the hospital.
Mum was in A&E for at least four days before she was admitted into a ward in the hospital. In A&E the staff and doctors couldn’t distinguish or relate her condition to anything they had ever dealt with before, therefore they had no idea how to treat her and I don’t mean just medically!! Ida was left out in a corridor and my dad, Gareth and I all did shifts as they would only let one person in at a time, Even at that it was a push to be “allowed” back there.
When we finally met the neurologist, he re- diagnosed her with MSA (Multiple Systems Atrophy). He went on to tell us that there was no cure for this illness and that slowly over time she would deteriorate, her mobility would suffer, her personality would change along with a long list of things until she reached mortality. They assured us that they would do the best they could for us, and that they did. She was discharged from hospital in Late February and a few days later she went to St John of Gods for a few months. Here they got the balance of mums medication right. It took a lot longer than any of us expected finally she was discharged in late May and came home.
Having her back at home proved quite difficult as she became so reliant on other people for care. Mum needed us more than ever. Dad took a hands on approach and did everything. He was an absolute hero! This is when, thanks to the social worker and the team in St. John of Gods that the Local Health Nurse got involved. She deployed a team up to the family home to see what could be done to help. The occupational therapist suggested putting hand rails up, elevated toilet seat, chairlift and changing the bathroom door to a slide door. We also got a lady in to help with bathing mum one day a week, which mum loved as dad and I could never get her hair just right but this woman did!!
At this stage mum was still walking with the help of a stick and dad on the other side for balance, that wasn’t stopping dad taking her anywhere and everywhere she wanted to go. They had a ritual for as long as I remember. For Saturday morning breakfast they would either take Gareth and me out for some pancakes and a fry or as we got older (and we thought we were too cool) they met their friends there. Liffey Valley Shopping Centre was their spot and I know mum loved going there.
As the year progressed so did the illness, Ida started wearing sunglasses a lot of the time, then eventually all the time, bar night time in bed. She still looked extremely stylish as dad would match certain sunglasses she had to her outfit for the day! Mum went for respite care for a few hours every Wednesday to the wonderful staff in the Carmen Centre in Leopardstown Park Hospital; this was an opportunity for dads only break mid-week.
We had a few checkups with the hospital and St. John of Gods throughout this time.
June 2011, her neurologist was retiring and on our last visit with him he explained that the illness had progressed way more rapidly than he expected. He threw PSP into the mix; He couldn’t give a definite answer because he wanted to wait until we met his replacement.
Two months later this neurologist took one look at her and said to my dad. “Paddy your wife doesn’t have MSA she had PSP”. After quite a good synopsis of what it was, off we went home and the research began. I think sometimes dad and I knew more about the illness than her doctors as we were “googling” it daily.