What’s it really like living with Parkinson’s?
I never really understood what Parkinson’s disease was until my mum was diagnosed with it at the age of 71 and even then, I had no idea what that diagnosis really meant. To begin with, mum had kept the diagnosis to herself and I was unaware she had any symptoms. We would always walk to school together to pick my children up and I had noticed that she was walking more slowly than she used to. She had always been a brisk walker, I would struggle to keep up. However, this slowing down whilst walking wasn’t a concern to me and we never discussed it. A couple of months in, mum disclosed her diagnosis to me. I remember saying something like “ok, you’ll be fine.” In my mind, Parkinson’s sufferers shake a lot but that's about it, right? I asked what had made her go to the doctor and she told me she had noticed that her left leg was ‘dragging’ behind her as she walked. She couldn’t bring it forward properly, so she’d gone to her GP, was referred to the hospital and was given the diagnosis. She had been prescribed dopamine tablets which should help.
Within weeks, mum was also diagnosed with breast cancer. It was at this point I started to worry. I began researching breast cancer and even spoke to my GP about this new diagnosis. Mum went through a double mastectomy and underwent radiotherapy. She remained brave and strong throughout. Parkinson’s had melted into the background. Thankfully, mum was given the all clear. The breast cancer was gone and she could get on with her life. The relief was immense. But then she started to have severe panic attacks. I had no idea what was going on. She had no idea what was going on. I would get her to breathe into a paper bag until the feeling passed. I would try to comfort and reassure her but I could see she was struggling. I thought that taking her out would distract her mind. Distractions would surely help, but it didn’t. If anything, it made matters worse. I asked her to discuss this with her GP but she didn’t want to. She had had her fill of hospitals and doctors and didn’t want to make a ‘nuisance’ of herself.
Mum seemed to learn to live with the panic attacks. Having been someone who went out everyday either for shopping or simply for a walk, she now didn’t go out very much but when she did, she always made sure she had a bottle of water with her. It was a comfort blanket. She found that drinking water during a panic attack helped, to a degree.
Soon the hallucinations started. Mum could see small children sitting in the washing basket and she’d ask what they were doing. There were no children - there was no washing basket. I would correct her, telling her there are no children nor a washing basket. I would feel the frustration building in me. Then she’d ask where her mum is. Her mum had died a number of years earlier. This went on daily and it was heartbreaking. I contacted her GP, explained the situation and was told this was most likely a side effect of the medication she was taking and that it is difficult to get the right balance of medication for this condition. Physically, mum wasn’t doing too badly. She could still get about albeit slower than usual. She had no noticeable tremors.
I was at work one day when I received a phone call to say that mum had called an ambulance. I rushed to the house and the ambulance was outside. Mum was in it. I asked her why she had called an ambulance and she told me she had seen her mum collapsed on the floor. She had called the ambulance for her mum. I explained to the ambulance staff that she suffers from hallucinations and that this is a mistake. Nonetheless, they insisted mum needed to be checked out at the hospital. I followed in my car. We spent the day at A&E whilst mum underwent all the blood tests and checks imaginable. She was eventually sent home with the all clear.
I attended hospital appointments with mum. She was entitled to one appointment annually. Her neurologist was kind. I asked multiple questions. I needed to understand why mum can’t have the right medication to help with her symptoms without the devastating side effects she was suffering. He took the time to draw a diagram of the brain for me. He explained that a particular part of mum’s brain is being affected by the disease. That dopamine, an important brain chemical, is being depleted due to Parkinson’s. It can be replaced by dopamine tablets but since these are taken by mouth, the dopamine does not just target the affected area of the brain, but enters the bloodstream and floods the whole brain. This causes other areas of the brain to be affected by unwanted dopamine - hence the hallucinations, panic attacks and other nasty side effects. He explained that if it was possible to inject the dopamine just into the exact area of the brain affected, this would be a solution but of course, that was not possible.
Soon after, I was talking to a friend who’s dad was also suffering from Parkinson’s. She told me that her dad attends a private clinic which specialises in the disease and she felt that he was doing remarkably well and definitely not suffering the symptoms my mum was. The clinic is out of our area but I decided to ask mum’s consultant whether he felt a referral would help and he agreed that a referral would be beneficial so I wrote a letter to mum’s GP asking to be referred. The GP agreed that the referral was a good idea but that no funding would be available. I contacted the clinic and mum began to attend.
The specialist at the clinic was wonderful. She assessed mum and immediately tweaked the medication. Soon after, the hallucinations subsided. The specialist also recommended an exercise programme which would not only help manage some of the physical symptoms, such as balance and mobility, but also help with her mental health. So we embarked on an exercise regime consisting of some aerobic exercise and strength training. Mum always loved walking so we would go for a walk everyday. We stuck to a pace which was manageable for her. We used light dumbbells whilst sitting down which helped to build back some strength. Most of all, she was happier in herself and began to smile again. Had I realised earlier, the positive impact exercise would have to help her condition, I would have ensured we factored it in from the beginning.
For now, we are taking one day at a time and have no illusions as to how this story will end. In the meantime, we carry on with the exercise and the medication and try to do everything we can to improve her quality of life. One thing I have learnt, exercise is a tonic, not only physically but also has huge positive impacts on mental health. It really is the best medicine.
If you are experiencing any symptoms, it is important that you seek medical advice from your health care professional.
