I live in fear of future after early Parkinson’s diagnosis

A WOMAN who has early-onset Parkinson’s disease worries about what she will be like in 10 years’ time.

Lisa Drage, 57, began experiencing symptoms aged 42 years old and was diagnosed by a neurologist a year later.

Ms Drage, who has four grown-up children, ran Dragonflies Montessori School in Norman Avenue, Henley, for 10 years before closing its doors in 2016.

She returned to part-time work at a local preparatory school when she was 51 and left that position in August last year due to deteriorating health.

Ms Drage had initially seen her GP after suffering from back discomfort and a stiff right arm but was told it was either the menopause or carpal tunnel syndrome.

She recalled: “I was in a lot of pain but they kept sending me away and just gave me a splint for my right hand because it kept not doing what I wanted it to do.

“I kept saying, ‘This isn’t normal’ and eventually one of the doctors referred me to a neurologist. Parkinson’s disease is very uncommon in such young people, which I guess is why they weren’t really looking for it.

“I started thinking it could be something else because my arm didn’t swing when I walked, which could be one of the first signs that you’ve got Parkinson’s.

“When I went to the neurologist, he asked me to walk across the room. He noticed my arm wasn’t moving and sent me for a dopamine transporter scan and the results confirmed I had Parkinson’s in July 2012.”

Receiving the diagnosis meant that she could better understand the symptoms she was experiencing. “I had no idea Parkinson’s would affect my bladder as much as it has,” she said. “I kept going back and forth to the urologist and they kept doing tests and I just constantly felt like having to go to the toilet, even if I had only been just five minutes earlier.

“They kept saying it was a urinary tract infection but it has been horrible. That, for me, is still ongoing and is often overlooked in those with Parkinson’s.”

The disease, which is caused by a loss of nerve cells in part of the brain called the substantia nigra, leads to a reduction in dopamine, which plays a vital role in regulating movement of the body.

Ms Drage takes near maximum dosage of Madopar tablets, which contain two medicines, levodopa and benserazide, designed to treat the disease.

She said: “I was quite worried when I got the results because once you’ve got Parkinson’s, you’re already quite far into the process, because the brain has been losing dopamine for so many years.

“The drugs they put you on help to artificially replicate the dopamine process, but it’s never going to be as good as what your body makes naturally. I had quite a bumpy patch initially but it calmed down after a bit and made me feel a lot better.

“As the disease progresses, you need more drugs, so you keep on taking more and more to the point now that I’m taking them about every two hours, which is almost the maximum dosage.”

As she is under the age of 60, she has to pay for the prescriptions as they are not means-tested.

Ms Drage said: “I only get a small percentage of employment and support allowance, which is really worrying. I get all the things I need provided but I have to pay for the majority myself, which is £12 a month, even with a prepaid certificate.

“It’s wrong because if you have diabetes or you’re diagnosed with cancer, then everything’s free. Why would they not give me the tablets that I need to survive?” Four years after receiving the diagnosis and receiving treatment, Ms Drage became psychotic and was hospitalised for seven weeks.

“I was completely lost,” she said. “I realised I was deteriorating and I couldn’t tell the difference between day and night. I was up all night and paranoid about everything. I couldn’t have a normal conversation with anyone or do anything normal like cook a meal.”

At the time of her psychosis, her son Benjamin, 26, who was living at home with her, witnessed the worrying behaviour.

She said: “I remember I was in the garage, as I kept thinking someone was breaking in through the ceiling. I got a ladder and propped it up against the washing machine, which is stacked up high, climbed on to it and then on to the roof of the garage and got stuck there.

“My son came in and was shouting at me, asking me what I was doing and asking me to get down. He was really upset — it was awful. That was the catalyst which proved something needed to be done because, if not, I think I would have killed myself by accident.

“I don’t really remember anything but I know it would have been horrible for my son to see me like that, so I opted to go to the ward voluntarily for my own safety.”

Ms Drage said: “They got me into the hospital, because you can’t take this drug unless it’s prescribed by a consultant, and it takes a long time to get on to it. I had to have my bloods checked regularly — I still do now — as it can cause problems to your heart. I was a lot better once it started to work in the second week.

“I can never come off of it, as no one would be able to predict what the likelihood would be of the psychosis reoccurring.”

As the disease has progressed, Ms Drage’s mobility has continued to deteriorate, meaning she struggles getting out of bed and chairs and up and down stairs. Ms Drage said: “I’ve got good support but I’m only 57. What am I going to be like in another 10 years? Lots of people have a bad tremor but, when I’m tired or stressed, it breaks through. If they took me off the drugs, my right hand could do virtually nothing.

“I’ve started getting it on my left hand too now, as I can’t get it to do what it needs to do sometimes. I’m prone to falling as my feet stay up, as people with Parkinson’s have poor balance.” Ms Drage worries about the disease progressing before she is able to go into a care home at 60 years old. She said: “That’s one of the things with Parkinson’s, it’s the impact on the families. Essentially, the husband or wife ends up as the main carer but I’m on my own.

“My son Benjamin, 26, helps out as much as he can but he’s probably not at home for that much longer. I’ve been looking at going into a care home but you can’t until you’re 60 and I’m 57 now.

“I miss being able to walk properly,” she said. “I can’t pick things up, bend down or put my shoes on — everyday things you take for granted are hard.”

Despite her deteriorating condition, she remains optimistic that research, support and funding will aid progress. The “Parky Charter”, a government petition started by Mark Mardell, a former BBC journalist, asks the Government to increase funding for the fastest-growing neurological condition in the world. It has received more than 55,800 signatures.

The five measures listed in the charter include speedy specialists, instant information, Parkinson’s passports, comprehensive care and a quest for a cure.

Ms Drage added: “There are lots of positives, it’s not all doom and gloom. It’s just working out what helps you best.”

Email: lisaannedrage@gmail.com or jennys.parkinsonsuk@gmail.com