While the Progress Recorder App was in development we underwent paper trials.
We asked our user who suffers from parkinsonism symptoms to draw the spiral over the course of a month while taking notes in regards to medication, supplements, treatment, mood, stress, environment, diet, exercise and general activities.
Here are his recordings:
Monday 10 April 2017 - 07:13 AMMedication: 1.5 mg Sifrol ER. Supplements: Mega PC-35 x3, Evening Primrose x3, Co-Q10 x1, VegeNAC x2, Glutathione Reduced x2. Ketogenic diet. Stressed from driving all weekend and a lack of sleep.
Monday 10 April 2017 - 06:05 PMSame medication/supplements. Ketogenic lapse. Long day at work. Feel more relaxed now that it's done for the day. Relaxing night watching TV.
Tuesday 11 April 2017 - 06:55 AMSame medication/supplements/diet. No breakfast. Just woke up. Really cold! Didn't sleep well.
Wednesday 12 April 2017 - 07:30 AMMedication 0.375 mg. Same supplements/diet. Woke up early. Had breakfast already.
Wednesday 12 April 2017 - 09:00 PMSame medication/supplements/diet. Relaxing day working from home. Worked all night.
Thursday 13 April 2017 - 11:05 PMSame medication/supplements/diet. Long day at home working. Pretty chilled.
Friday 14 April 2017 - 08:03 AMSame medication/supplements/diet. Realised that it's easier if you dig the pen into the paper.
Tuesday 25 April 2017 - 09:25 PMSame medication/supplements/diet. Anzac day. Bad sleep. Went to bed early. Woke up at 9.
Saturday 29 April 2017 - 12:30 PMSame medication/supplements/diet. Binge watching TV. Not motivated to do much else. Worked at same time.
Thursday 04 May 2017 - 11:30 PMSame medication/supplements/diet. 1 year anniversary of diagnosis. Yay! Worked all night. Sore neck.
Wednesday 10 May 2017 - 11:05 PMSame medication/supplements/diet. It's been a good week. Haven't felt bad since Saturday.
Thursday 11 May 2017 - 07:49 AMSame medication/supplements/diet. Woke up early to garbage truck. Late on supplements.
Thursday 18 May 2017 - 08:30 PMSame medication/supplements/diet. Went to dentist and had amalgum fillings removed. Doing detox.
Friday 26 May 2017 - 12:30 AMSame medication/supplements/diet. Moving things, cleaning and taking photos all night.
It seems that the user's symptoms didn't change when the medication was reduced to a quarter. Symptoms were generally worse first thing in the morning and during or after active weekends. Diet may have had an affect - but it's hard to say. Since medication has reduced, the patient feels much better but is concerned that his hand is getting slower and heavy - doesn't move much.
As far as Progress Recorder goes, It appears that simply taking notes is a little repetitive and doesn't prompt useful information. It would be ideal to enter medication once and then have the option to make changes as needed and include sliders for sleep and stress levels.
You can identify possible reasons for the fluctuation of your symptoms. The information can then be shared with your specialist.
