Another wet Thursday morning and I’m sitting in my kitchen thinking back over the past 10 years that have led me to writing this article.
Some of those years have been so hard and the challenges seemed insurmountable at times. There were tears, blind fear, anger and sadness.
Despite all of that, I’m now a much stronger, happier and better version of myself.
Ten years ago, I was experiencing irritable bowel syndrome (IBS) symptoms. I just got on with it until it became quite bad. I saw a gastroenterologist and I was booked for a colonoscopy. It was a Friday evening and, as we waited to be discharged, I knew there was something wrong. My doctor opened the curtain. A nurse was beside him.
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To this day I can remember the next hour so vividly.
I looked directly at him and asked what he had found. My husband went white and had to sit down. I had a malignant tumour in my bowel. Within the hour I had a CT scan and was heading home with a referral for the next morning at St Vincent’s hospital, Dublin.
One moment you haven’t a care in the world, and within hours everything has changed. I had a right hemicolectomy a few weeks later. I asked to be discharged two days post-op as I just wanted to get home to my children, who were only 11, nine and five.
My children never knew that I had cancer.
I am one of the very lucky ones who made a full recovery and I am stronger as a result
When I was 21, and my brother was 14, our beautiful mum passed away from breast cancer. It devastated our family. I wanted to protect my children from the fear that cancer brings to a family. It wasn’t easy, but I managed to shield them from it.
I am one of the very lucky ones who made a full recovery and I am stronger as a result.
Three years later, I was faced with what was to be one of the biggest and most horrific battles of my life.
Silently, without a trigger or warning, depression slid like a poison into my life.
It nearly broke me. I lost every sense of who I was. It stripped me of every fibre of joy and love that I possessed. I couldn’t sleep, I couldn’t eat, I alienated myself from everyone and was on a trajectory to a place of not wanting to be here any more. Even thinking back to those months fills me with fear. Only for a very good friend putting me in her car and driving me to my GP, I don’t know how things would have ended.
I wasn’t capable of making safe decisions for myself.
It is very sobering to walk into Pieta House on Christmas Eve while hearing the laughter coming from the ice skating rink across the road. Only those who have experienced severe depression will know what it is like. Five seconds when you open your eyes in the morning are the only glimmer of light in the day. It hurts to breathe and the darkness is indescribable.
With much love and support, I clawed my way back to my family.
Again, I was one of the lucky ones that came out the other side and much stronger as a person. I always wondered why or how that happened to me and accepted that I would probably never know.
That was, until I was diagnosed with Early Onset Parkinson’s Disease (EOPD) in January 2025. An unexplained episode of severe depression can be one of the early symptoms of Parkinson’s.
The year before diagnosis was truly awful. EOPD comes with up to 40 symptoms. One of the early and terrible ones was apathy, often mistaken for depression or laziness. I would drop my children to school, come home and sit on the sofa, staring at the wall until a preset alarm would remind me to collect them. I was so scared. I didn’t know how to deal with what was happening to my body. I knew I had Parkinson’s but played the game of, “If I don’t say it out loud, it isn’t happening”.
After several pretty bad falls, I knew it was game over and I had to face reality.
I was so scared. I didn’t know how to deal with what was happening to my body
It was a sunny January day when I got my diagnosis. I knew what I was going to be told and yet I walked out of the consultation feeling like a shell of myself and that I had aged 30 years. In my head, this was a disease that only affected elderly people. Parkinson’s disease is mostly diagnosed in people over the age of 60 – however, doctors consider anyone diagnosed with the disease under the age of 50/55 to have EOPD.
I went into total shock and despair. I felt as if what was facing me and my family was possibly going to break us. I couldn’t speak for nearly two weeks. I told Tom that I understood if he wanted to leave me. I most definitely didn’t want pity.
Both myself and Tom were lost. We had no answers, no plans, no idea what to do with this disease that had come uninvited into our lives. A very good friend rescued us. She sat in our sittingroom and rang a girl we both knew who was diagnosed two years previously with EOPD. They put the call on speaker phone and told us what we were to do. She gave us the name of a GP, psychotherapist and neurologist we were to attend. My initial neurologist was near retiring, hence the change.
On the day of my diagnosis, my doctor gave me a piece of great advice. He told me to tell only very close family and friends my diagnosis until I was able to say “I have Parkinson’s” without crying. It’s a grieving process for the loss of the future I thought I would have.
When Parkinson’s comes in the door it hits every person in the family, and hits them very hard. Through all of this my overriding priority was and always will be to protect my children. Telling my children was unbelievably difficult and heartbreaking, especially Oscar as he was in college in the UK. All I wanted to do was hug him and I couldn’t. That broke my heart.
Oscar, Max and Anya have been nothing short of amazing in how they have dealt with my diagnosis. They have dealt with it with a level of maturity and kindness and love that has made me so proud of them. There have been tears and lots of chats and now a lot of dark humour at my expense! So, normal service has resumed.
Tom has always been by my side. I’m not saying it has been easy and the vow “in sickness and in health” has definitely been tested to the maximum, but we are still standing, still talking, still laughing – and, most importantly, still love each other.
After three months of staying at home and avoiding friends, I woke up one morning and thought: “Today is the day I share my news.” I knew if I left it any longer I would begin to feel ashamed and the stigma I perceived would swallow me up.
The support in this country for people with EOPD is minimal, and the stigma can be huge. I knew I had to help myself and I was not going to let this beat me. I went searching online for help – and I can tell you, it’s a very dark and scary place. Eventually I came across “The Fitness Mum”, Vicky, a mum of three, similar in age to my kids. Vicky is a personal trainer and also has EOPD.
I had never messaged someone on Instagram before. After about 20 deleted messages, I pressed send. That was to become one of the most important messages I ever sent. Vicky has become one of the most important people in my life. Not only is she my personal trainer, she also encouraged me to do my first Instagram Live with her and that has led to so many doors opening.
Exercise is the only thing that can slow down Parkinson’s. I had tried a Pilates class, but left in tears after being addressed in front of the whole room about why I was shaking. It was beyond humiliating. After that I didn’t have the courage to do group classes. So I started one-on-one yoga classes with Bo. When I started with Bo and Vicky I could barely lift my left arm, and now I am lifting 6kg weights.
Boxing and dancing are two of the best activities to help with Parkinson’s. I now box every week and the benefits to my movement and co-ordination are very visible. I also go to the gym, cycle and walk almost every day.
Last October, after many months of feeling very unsupported, I came upon EOPD Ireland – an unfunded charity doing amazing work to support people with EOPD, and increase awareness of the disease.
The stigma attached to EOPD is terrible and the ignorance of the general public towards people with EOPD is truly unbelievable. I have been accused of being drunk at 11am while moving a sun lounger on holidays. I have been reduced to tears while struggling to peel sticky labels in a post office. I have also had a similar experience in a bank.
People have said the most insensitive things to me. The worst being: “Thank god you got it and not Tom.” This all has to change and stop. The only way to do this is to raise awareness and educate people.
It is almost impossible to get a neurology appointment in this country. There are inordinately long waiting lists. So, on top of getting a very difficult diagnosis, you then can’t access medical care and the other supports that are essential to cope with this disease. So many people are lost, unsupported, broken and alone.
I set up my Instagram page, @sally.stumpf, because finding Vicky changed my life, so I need to pay it forward to help others. I have so many people messaging me now that have been in my shoes, completely lost, terrified and feeling very alone. This has to change.
As with my other health challenges, I’m one of the lucky ones
So now, fast forward to where I am today.
I am wonderful. I am so much stronger than I have ever been. I have a clarity in my life that I never had before. I’m now a director on the board of EOPD. I am just back from Bath with 30 of my friends and family after taking in a walk to raise awareness around EOPD. I am doing an abseil in Dalkey Quarry on April 11th, which is Parkinson’s Awareness Day. And, on April 25th, I’m hosting a black-tie gala ball in Faithlegg House Hotel alongside my colleagues in EOPD to raise much-needed funds.
Most importantly, though, I’m back to being me again – and an even stronger and better me. Parkinson’s has opened so many doors and I have met so many wonderful people that have enriched my life.
So, as with my other health challenges, I’m one of the lucky ones. I have a wonderful life surrounded by wonderful people and I have a lot more living to do.
