I was diagnosed with Young Onset Parkinson’s at the age of 43, and I have been living with the symptoms of young onset Parkinson’s for 20 years. I am extremely dissatisfied with the amount of sleep I am getting. I am averaging 3-4 hours sleep at night if I’m lucky – some nights 1-2 hours, and no sleep during the day. My sleep patterns have gotten worse since having young onset Parkinson’s, and my sleep patterns are also affecting my partner. The factors impacting on my ability to sleep include cramping, difficulty turning over in bed, frequent awakening, night-time urination, talking or yelling out while asleep and pain. Strategies that have been useful or could be useful in improving my sleep patterns include increasing exercise during the day, keeping busy during the day, getting as much natural light during the day as possible and going to the toilet directly before bed. Depending on the weather forecast, trying to ensure I don’t get overheated or too cold during the night by adjusting what I’m wearing or the bed coverings. Each night I cut a 500mg paracetamol tablet in half and a Temazapan in quarters.
My objective is NOT to take any of these but if I wake up and I’m unable to regulate my body temperature or have dystonia in my feet, I take 250mg of paracetamol. If, after several hours, I’m still unable to go back to sleep, I take the quarter of Temazapan or I might sometimes take a half. Some nights I take none, others more – it varies, but I have to be careful and not take too big a dose so I’m still able to get myself to the toilet. I also have significant gait festination and also akinesia during the night in particular, and sit on a walker and push myself backwards, or I crawl to reach my destination. It’s hard work but I keep fighting!
