Being a mum and carer to my son

Sarah is mum to Alex, who has Parkinson’s. Alex was diagnosed when he was just 11 years old, although experts think he may have shown symptoms from as early as 3. Here, Sarah shares her experience of being both a mum and carer to her son.

When Alex was very little he enjoyed doing all the things that other kids did, like playing with friends at school and staying around at other people’s houses. But when he was around 7, I noticed things change. He would panic a lot and often didn’t want to leave my side. He would get tired easily, his handwriting suddenly deteriorated and over a period of 6 months he almost lost the ability to write altogether.

I asked for help from the GP, but they just said it wasn’t anything out of the ordinary. I felt I was dismissed as being an overly anxious mother and left to deal with it.

He then started to have falls for no reason. The falls became so regular that we sought help from a paediatrician [a doctor who specialises in children’s illnesses].

At first they thought he had epilepsy and gave him medication to treat it, but it made no difference. It got to the point that he was falling up to 28 times a day and couldn’t sit down because he was so bruised. 

Eventually, after a lot of persisting, we managed to get a referral to a top paediatrician in London at the Evelina Children’s Hospital. After quite a few tests for coordination and cognition, they told us he had Parkinson’s.

It was, to say the least, a massive shock. Health professionals looked at some of our home videos and said they could spot signs of Parkinson’s in Alex when he was just 3 years old, and were equally as surprised. I was petrified – I had no idea that this was something we’d ever have to consider at his age, and it felt like we were being thrown into a massive black hole, where nobody really knew any answers because of how unusual it was.  

As a first-line treatment, he was put on levodopa. This, however, was like giving him rocket fuel. Within minutes of taking it, he would start running around the house, up and down stairs and all over the place. He would phone 999 constantly and talk to the police. It clearly had an impact on his mobility, but it was also making him manic. I had to hide phones and on numerous occasions apologise and give explanations to frustrated (yet sympathetic) police officers.

It’s hard to know whether you’re doing the right thing at the time, but be persistent in getting help.

I was spending a lot of time in London at the Evelina Hospital with him at the time, so my mum helped look after his older sister, Becky. It was a tough time for everyone, but we all rallied around.

Eventually, Alex stopped responding to the levodopa. His dose was doubled, which I was very nervous about, but this made no difference. He was then put on rotigotine patches, which he still uses now. 

Despite the drug treatment, his mobility declined and he was given a wheelchair aged 12. By the age of 14, his condition had worsened to the point that he was offered deep brain stimulation (DBS). This type of surgery is usually offered to people whose symptoms no longer respond to medication and who have had Parkinson’s for a number of years. Obviously, the unusual thing in Alex’s case was that he was in his early teens, and this was a huge decision for everyone to make. But, the professionals gave us lots of information on the benefits and risks and we felt very informed. Also, at this stage, we were told it was his best chance of regaining some quality of life, so we decided together it was the best way forwards.

Alex had high expectations about the surgery. He was as cool as a cucumber going into the 8-hour operation – as opposed to me, who was a bag of nerves. His bravery was indescribable. Thankfully it was a success and some of his symptoms, including his tremor and problems with involuntary movements, improved. It gave him his smile back, which we had all really missed.

As time went on, Alex ended up needing 24-hour care. He finds it difficult to speak, has sleep issues and his hands don’t really work anymore, so he needs assistance with everything.

Being a young adult, he became isolated. I became his full-time carer as well as his mum. I didn’t dare switch off and I wasn’t sleeping at night, while during the day I tried my best to keep him entertained. Naturally, things became strained. 3 years ago, when Alex was 21, we both made the decision that he would have better support in a nursing home. This was a difficult decision but one that improved our lives. He’s just down the road from me now and it means I can be his mum again, not just his carer.

Despite all of this, it’s not all doom and gloom. Alex has an amazing relationship with Becky (pictured), who idolises him. We often go on days out together to the beach and still enjoy family holidays. He has also kept his sense of humour. People often don’t know how to interact with Alex – despite good intentions, they may just give him a pitying look and not know what to say. What they don’t realise is that we may share a joke about them in secret. At the care home, he gets to mix with people his own age, who he has more in common with, and he is hugely popular there. 

I wanted to share our story because the hardest thing can be feeling like you are fighting Parkinson’s on your own. I asked about prognosis once and was just told to keep Alex as fit and healthy as I could. I’m past the point now of looking for answers, as I know that, with Parkinson’s, sometimes the answers just aren’t out there.

To anyone else going through this – trust your gut instinct as a parent. It’s hard to know whether you’re doing the right thing at the time but be persistent in getting help.

One thing I think I got wrong was that we didn’t grieve. We were told the news and, even though it was devastating, we ploughed on and put on a brave face. But it’s OK to wallow now and again. Get it out of your system and you’ll feel stronger to carry on.

We’re still surviving and living every day like it’s our last. There is no way we’re going to miss out on any opportunity together as mother and son.