Personal stories from our Members

For those of you that don’t already know me, my name is Catherine, I’m 32 years old, and am a final year Physician Associate student at Newcastle University. I used to be a Certified Exercise Practitioner for Falls and Parkinson’s Disease; however, I decided to retrain and change career path when I started to have falls – which my patients and my husband found hilarious! I remember having an uncomfortable twitchy feeling in my legs when sat at my desk at work, and I used to get very tired to the point where I had to start pacing my activity. I was also unable to queue, and stand and browse at the supermarket (at the time I didn’t know why), so I would pop to the shop for one or two items everyday and used the self-checkout.

Following a series of falls in the summer of 2018, I went to the GP and asked to be referred to neurology. I was diagnosed with OT in March 2019 at my first neurology appointment. At the time I had an essential tremor in my hands, and the OT affecting my arms and legs. Since that time my OT has progressed quite rapidly, and I now have a tremor in my jaw as well. I was reviewed by the same neurologist in March this year, and she witnessed my tremor come on much more quickly than it used to, and I now ‘shuffle’ when I turn or have to step backwards, and I get stuck on the spot.

My diagnosis has now been changed to OT ‘Plus’, which is ‘plus’ Parkinsonism. How ironic that I used to work with Parkinson’s disease! Work wise, I really struggled with the ward rounds in the hospital because they required standing for 2-4 hours, and afterwards I would be absolutely exhausted! I carried my OT ID card with me behind my staff ID, and used to sit down wherever possible. Before OT I had never noticed what a distinct lack of chairs there are in hospitals! I also put my swimming metronome on my lanyard, which I would use to cue me on the stairs – otherwise I get stuck at the top!

Assisting in surgery was a tricky six-week placement. I tended to attend theatre for 3-4 hours in the morning, and then spend the afternoon on the surgical decisions unit so that I could sit down. I enjoyed theatre but I’m so relieved that I never have to do it again!

Medication-wise I’ve had an absolute nightmare. The neurologist I saw made several recommendations for medications for me to try. I saw three different doctors at my practice and none of them would prescribe the recommendations. I can only assume this is because of my age, the side-affects associated with these medications, the dangers of long-term use, and the need for increased doses over time. I am relieved to report that at my follow-up neurology appointment this year she filled in an outpatient medication request form which I handed in to my doctors surgery, and the medication has now been added to my repeat prescription.

My plan when I qualify in August is to start working in general practice, where I can spend most of the day sitting at a desk. This new career will be a much better long-term path for me, and although getting to this point with OT (and numerous falls along the way), I’m excited about the future! I also hope that because I have OT, I can really empathise with my patients and the challenges that they face on a daily basis. For example, at the age of 32 I have to sit down to get dressed, and I can no longer have a bath because I get stuck! I also take very short showers because I can’t stand that long, and I have to pace my daily activities so that I don’t get too tired.

OT has also made me really evaluate my life; I worry about having children because I’m worried that I won’t cope. I’d like to travel to America and Australia which I should try to do sooner rather than later. But most of all, it has made me grateful for all the things I’ve already done in my life, and how making the decision to change carer was the right one at the right time, and I cannot wait to start working in general practice and help others.