Parkinson's Research

A CUE1 Beta-Testing Diary: Week One

One of our beta-testers of the CUE1 device tells us about their first week receiving and using the CUE1.

One of our beta-testers, an experienced clinician with Parkinson’s, has shared with us her diary using the CUE1. For this blog, she takes a look back to the first day the Charco team visited her home, received a warm welcome, and helped her begin testing the CUE1…

Day Zero

  • Number of things dropped: 3. 
  • Hours of sleep: 4 (due to excitement of meeting Lucy and her team). 
  • Tremor score: 7/10 (10 being the worst).

I’m not sure if this is all a dream or whether Lucy and her team are actually going to arrive at my house. Her last email states they are ‘on their way and will be with me at 11am’. Go to supermarket and buy gallons of fresh orange juice from orange juice squeezing machine (without spilling any!), half a dozen fresh croissants, and a huge quantity of fresh strawberries as well as various assorted sandwiches and wraps. What do neuroscientists and engineers eat?

At 11am I see a grey car pull up, and direct it to our driveway. Lucy jumps out, followed by Floyd. My neighbour  who is cutting the hedge also greets them, as I peer into the back seats to welcome the rest of the team. I am mildly surprised that the remaining 2 team members have a combined age of 8, but usher them into my home nonetheless.

Floyd offers to take the last 2 team members to the park, but they are supercute and I remember I have an enormous wooden train set in the attic – do they like trains? – yes, they do. Marvellous! After 10 minutes helping Floyd wrestle the train set through the attic door, I clear the floor of the living room for the train building engineers and Lucy and I settle into a discussion in the study.

Lucy is like a ball of energy. Have you ever seen a nature programme when 2 ants meet, and they join their antennae and exchange information? For the first time I feel like I have met someone who is on my wavelength. She is almost as excited as I am.

The next 3 hours pass in a blur but involve at various stages the following events:

I, Lucy, Floyd (in that order) are playing the piano with our socked feet inside the piano to better feel the vibrations.

Several hexbugs are running around the floor of my house.

We are looking for hedgehogs.

I am shown the CUE1: wow! It’s sleek and beautiful.

Smallest, supercute child is eating large quantities of strawberries.

My eldest son is chatting to Lucy about engineering.

I attach the Velcro-y rings to the skin in front of my sternum and at the nape of my neck and switch the CUE1 on. It feels reassuring. I had been worried it would feel like I was having palpitations, but it doesn’t feel like that at all.

I wave Team Charco off at 2.15pm sending them in the direction of the beach. 

My friend arrives for a coffee 10 minutes later and we survey the living room which is now eerily quiet but has a small plastic mountain in the centre of the rug: a leftover from the amazing architectural masterpiece of train set engineering that was in place 15 minutes ago. My friend sits on the sofa and finds a piece of half chewed croissant on the cushion beside her.

Over the next hour when my friend and I sit and drink coffee in the garden, she is constantly looking for wasps and bees until we realise that she is hearing the subtle buzz of the CUE1.

I am exhausted but strangely elated and find that when I play the piano 3 hours later I can play the piece with both hands keeping time. The CUE1 softly purrs on my sternum reminding me that it is there to help.

Day One

  • Number of things dropped: 2. 
  • Hours of sleep: 6. 
  • Ambient temperature: 18 °C (I decided to add this as it has such an enormous impact on my symptoms; the colder it is, the worse my symptoms of tremor and stiffness are).
  • Hours wearing CUE1: 7 (6 hours on sternum; 1 hour in right palm). 
  • Tremor score: 5/10 (so better!). 

Woke up and strapped CUE1 to right palm using Tubigrip. Made breakfast fairly easily, then friend arrived. I transferred CUE1 to my sternum as we started an hour of PD Warrior exercises, which were done with very little tremor or stiffness. Husband says I remind him of Iron Man, who has special gadget that gives him energy attached to his chest.

Played piano quite easily, ironed a mountain of clothes and bedsheets and cooked, all with no tremor – definitely an improvement. Ran out of batteries – both the CUE and myself – so had short nap at 3pm. Still very little tremor and no stiffness until 7pm when tremor started. Replaced CUE on sternum but tremor continued so switched CUE off after 30 minutes and took medication. Tremor settled a little. 

Day Two

  • Number of things dropped: 2. 
  • Hours of sleep: 6.
  • Ambient temperature: 20 °C
  • Hours wearing CUE1: 9.5 (sternum 8 hours, right palm 1.5 hours). 
  • Tremor score: 2-7/10.

Woke up after 6 hours undisturbed sleep (fabulous but unusual) and stuck CUE1 on sternum. Did 20 minutes meditation – the purring of the CUE1 is rather relaxing – then 20 minutes of yoga. Tremor was there on waking, though not as bad as usual but that could well be due to temperature being 14 degrees, warm for 7 AM.

Decided to switch CUE1 to palm of right hand since this is the position I started with yesterday, but tremor was 6/10. Tremor worsened at 9.30 and carried on (level 7/10) until 11.30 despite CUE1 on sternum. Took lunchtime medication, and had very little tremor for next 8 hours (2/10). Very good, but could be ambient temperature.

Friend from exercise group phoned and I mentioned CUE1. She was super excited – held mobile phone to my sternum so she could hear vibration.

Tremor started at 20.30 – both hands and arms. Attached CUE1 to front and back right hand but they are different speeds as app not working. Stopped CUEs at 21.30. Tremor 7/10.

Day Three

  • Number of things dropped: 3. 
  • Hours of sleep: 6 ½ (amazing as all in one go!). 
  • Ambient temperature: 21 °C
  • Hours wearing CUE1: 3. 
  • Tremor score: 5-6/10.

Woke after an amazing 6 ½ hours of sleep. Tremor 7/10 on getting up from bed. Realised that the position of the CUE1 on my sternum is probably not allowing the best conduction of vibration. I also stuck the ring on ‘off-centre’ which is driving husband mad, as he hates things to be squint. Try various options to hold CUE1 down onto my sternum more firmly, including wearing sports bra with tissues stuffed down front, then a pair of rolled up socks which makes me look like Ripley in the film Aliens when she dreams alien is about to come out of chest.

Eventually realise will have to resite the device and use another sticky ring (last of the 3 but luckily I bought more). Soon realise that in its new higher position my necklace is rattling against the CUE1. Know the noise will drive me and everyone else mad so reluctantly remove necklace, scolding myself for being so upset at having to take it off (it’s just a necklace for goodness sake!).

It’s still only 7AM and now when I walk downstairs, the CUE1 buzzing quietly on my higher sternum, I realise I feel a bit off balance which is really unusual. I have never felt unbalanced before, so this is really strange. The strange feeling of being slightly ‘drunk’ continues and tremor not settling with medication the way it usually would. Exercise group arrives at 9.30 and I struggle to do the exercises which is really unusual. My tremor in both hands is 6/10 and I feel a little off balance.  Decide to switch off CUE1 at 10AM. Feel out of sorts for next 10 hours, and end with a very late night.

Day Four

  • Number of things dropped: 2. 
  • Hours of sleep: 6. 
  • Ambient temperature: 21 °C
  • Hours wearing CUE1: 1. 
  • Tremor score: 2-6/10 (v. good).

Woke up. Tremor 6/10, and don’t feel at all unbalanced. Decide to just use CUE1 on right hand rather than on sternum. Place tips of all 5 fingers gently resting on CUE1 for 20 mins while still in bed then repeat this at 13:00 when I can feel the tremor starting again. I have NO TREMOR it just disappears after the 20 min of CUE1, and I play piano for an hour perfectly (well, better than usual). Everything is in time and coordinated, really strange but wonderful. The ambient temperature is warm, though so I can’t say for certain it was the device – it could be the warm day. Tremor 2/10.

Put tips of all 5 fingers of left hand for 20 minutes on CUE1 at 15.00, and have tremor of 2/10 for next 6 hours which is unusual. Tremor starts at 20.00. I strap CUE1 to right palm for 15 minutes – tremor just disappears!! Very unusual.

Day Five

  • Number of things dropped: 1 (unfortunately it was the CUE1 – sorry! But it seems unscathed). 
  • Hours of sleep: 6 ½. 
  • Ambient temperature 23 °C
  • Hours wearing CUE1: 1 ½ (all on fingertips). 
  • Tremor score: 2-6/10.

Woke and tremor starts in both arms. Decide to go back to bed for 20 minutes with fingertips of right hand resting on CUE1. Tremor disappears(!).

Get up and ready myself for ‘pants challenge’. ‘Pants Challenge’ greets everyone every morning (unless you wear a kilt). Have v. good balance and can stand on one leg no problem. BUT 2 trembly hands + arms = impossible to get legs into wildly-moving target. Usually resort to pinning pants to floor and somehow get legs in one at a time. Today hands are still as can be; legs glide in gracefully – is beautiful and calm. Take advantage of peculiar, still hands to apply facial moisturiser properly for once.

Spy mascara, sitting forlornly – never used. Recall mother’s childhood warning – ‘You’ll have your eye out with that’. Suspect all mothers say that (Have been doctor for years and never seen anyone with their ‘eye out’). Apply mascara without corneal injury, this is not normal.

Rest left fingers on CUE1 for 20 mins after breakfast, take meds as normal. Have 2/10 tremor all day, even after doing 2 hours of exercise (usually makes tremor worse). Repeat right hand then left-hand fingertips after lunch for 20 mins, then at 20.30 tremor kicks in again. Apply CUE1 to right and left fingertips for 20 minutes and tremor reduces for 2 hours. Excellent.

Day Six

  • Number of things dropped: 1. 
  • Hours of sleep: 5 ½. 
  • Ambient temperature: 23 °C
  • Hours wearing CUE1: 8 (6 on sternum, 2 on right hand). 
  • Tremor score: 2-4 (briefly 9/10).

Decide to wear CUE1 on sternum all day, to reproduce day 2. Have temporary anxiety attack at midday, when I return home from shops and realise I don’t have device on my sternum!! Imagine CUE1 lying in car park with huge 4-wheel drive reversing over it, or random dog finding it and eating it. Take deep breaths through nose and start search of house. Mentally remind self to ask Lucy if a locator could be attached to it (people lose enormous, great mobile phones do they not? This is tiny in comparison). Find device behind TV in kitchen where usually sits in docking station but is sitting ready and waiting ‘undocked’ (had left docking station upstairs).

Tremor 2-4/10 all day. Briefly hit 9/10 for 10 minutes of ‘lost CUE1 episode’.

At 14.00 decide to do a ‘trial’ of the device properly. Lie down (to reduce effect of gravity which worsens tremor) in dark room with no sound and eyes covered so only sensation will be touch. Spend over 2 hours using CUE1 to monitor tremor response. It definitely reduces the tremor in jaw and hands, but only when it is placed on palmar aspect of right hand at any location (will try left hand tomorrow).

Tabulate results.

Speak to Alex at Team Charco regarding the app not working, and realise I need to have the device which is linked to the app switched ‘on’ when using app (technology not my strong point). Spend remainder of day thinking of further trials I should do.

Day Seven

  • Number of things dropped: 1. 
  • Hours of sleep: 6 ½. 
  • Ambient temperature: 19 °C
  • Hours wearing CUE1: 2 (1 ½ hours placed on hands, ½ hour on sternum). 
  • Tremor score: 2-6/10.

Tremor 6/10 on waking. Hold CUE1 – one in right hand, one in left hand – and tremor reduces to 3/10 for 15 minutes after switching devices off, but then returns to 6/10. Take meds, and tremor 2/10 rest of day. Put CUE1 on sternum again. Do not feel at all off balance so do not believe that the balance issue on Day 2 was anything to do with the device.

Friend arrives and we do 1 hour’s exercise easily.

Have fabulous, almost tremor free, day!

Put CUE1 on sternum to play piano as am convinced it helps me time the notes more accurately.

So ends the first week of testing.

Thank you:)

Until next time…

A big thank you to our tester for sharing their account of week one! Please keep a lookout for the second instalment of this beta-testing diary, coming very soon :).

 

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2 thoughts on “A CUE1 Beta-Testing Diary: Week One

  1. George Kapetanakis says:

    Can’t wait to try it.

  2. Wendy Barnett says:

    It sounds wonderful does it help with pain and dystonia ? I am looking forward to trying it soon.

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