Posy: Medical Detective

Posy has become a medical detective! She can’t help drawing conclusions from published medical research combined with her own experience of Parkinson’s disease. This is probably a healthy occupation for Posy, for, as a Parkie, any analytical thinking must surely benefit her brain cells.

Posy’s thirst for medical knowledge began when she and her sister cared for their father after their mother suddenly passed away. Desperate not to lose him too, they studied everything and anything that was mentioned by his doctors.

They studied to the extent that they were often asked if they were medical professionals. (Posy remains convinced that her sister should have trained as a doctor.)

Exercise caution before any change

Now that Posy finds herself in the role of the actual patient, she has realized that unless we have a specialist in our pocket, our tendency to jump to conclusions (because we really, really want conclusions) can have repercussions.

Indeed, perhaps it was over-presumptuous of Posy when she took it upon herself to come off 2 medications simultaneously, without the knowledge of her practitioners.

The war against insomnia

Posy had long needed some action in her cold war against insomnia and the resulting fatigue. Every night, she would toss and turn, wide awake, hearing the chiming of the Church bell every quarter hour. If by 7 AM she began to doze, she was cruelly thwarted by her leg pain.

A nightly dose of amitriptyline was prescribed. It helped to ease the leg pain but had negligible effect on the insomnia. To help Posy fall asleep, and to prevent her intermittent akathisia, the consultant prescribed clonazepam. It certainly worked, but Posy did not seem to be able to tolerate it.

The day after taking it, she would feel completely drugged and heavy-headed. The dreaded nighttime akathisia disappeared, only to reappear the next day like a withdrawal symptom. Posy seemed to be sinking into some sort of ironic, catatonic abyss. This was not living.

Taking decisive action

Having endeavored for many years to find the cause of her debilitating fatigue, Posy was at the end of her tether. Convinced that the professionals were unable to cure her chronic sleep deprivation, Posy turned back to her own research.

Posy could not live in the permanent fog caused by a "fearful" benzodiazepine, clonazepam. So, she stopped taking it. Posy concluded that amitriptyline had insignificant effect on her leg pain. So, she stopped taking that, too.

For a few days, Posy felt so much better. She had a clear head and thought she had finally won. However, within a week, she was feeling worse than ever.

The consultant steps in

Posy analyzed all her meds again and considered their effects on her. Armed once more with piles of (not completely anecdotal) information, she came to the tentative conclusion that rasagiline might be making her unwell.

Luckily, before Posy could take herself off rasagiline, she saw the consultant. He took her insomnia and fatigue very seriously and arranged for her to attend a mindfulness course. Then he reconsidered and reconfigured her medications.

Reassuring Posy that clonazepam did not work in the same way as diazepam, he re-prescribed a new dose. He emphasized that it really would help her fall asleep and prevent akathisia. It did! Then, he persuaded Posy that a very low dose of amitrityline would help with the leg pain ... it did!

The tide turns

A Parkinson’s psychologist concluded that Posy was on alert all night in case her daughter should need to message her. He suggested she leave her mobile phone in another room, having instructed her family to call the landline in an emergency. This has revolutionized Posy’s nights!

Posy realizes that consultants should always be the preferred authority on the most suitable treatment for any life-altering disease such as Parkinson’s. Decisions should not be taken lightly, and professional, medical knowledge is better when combined with the anecdotal experiences of actual Parkinson's sufferers.

This will lead us onwards in our quest for, if not a cure, at least an amelioration of our condition. Together, we are warriors!