The Charco Blog

A CUE1 Beta-Testing Diary: Week Two

We hear more of our tester’s unique take on her experiences using the CUE1, during her second week of beta-testing.

Day Eight

  • Number of things dropped: 1. 
  • Hours of sleep: 6 ½. 
  • Ambient temperature: 24 °C.
  • Hours wearing CUE1: 4 (2 on sternum, 2 on palm).
  • Tremor score: 2-6/10.

Excellent sleep. Tremor 6/10 upon waking, so held device in right hand for 20 minutes then left hand for 20 minutes. Tremor still 6/10 until meds taken. Then tremor remained 2/10 for rest of day.

Did 1 hour PD Warrior exercises with CUE1 strapped to right palm. Right arm was stiff at start of exercise routine, but seemed to be better by end – not sure if an effect of device.

Acquired hedgehog in bucket from John at 2pm and deposited it in my hedgehog feeding station. It bolted under shed (where my hedgehogs live). Worried for next hour, as new hog v. big and may upset my little hogs. No noises of fighting so was reassured.

Busy all-day taxi service (again).

Decide that early morning (prior to meds) is best time to do any CUE1 experimentation.

Day Nine

  • Number of things dropped: 1. 
  • Hours of sleep: 6 ½ (this is marvellous really). 
  • Ambient temperature 20 °C. 
  • Hours wearing CUE1: 2. (1 on sternum, 1 in right hand). 
  • Tremor: 1-4/10 (simply wonderful!).

Every morning when I wake there is no tremor. Then (usually) after a minute it begins, like someone flicking a switch to ‘on’. Today, no-one flicks the switch. I wait for 20 minutes. Then after around 30 minutes it starts, but only level 4/10. Put CUE1 in right hand for 5 minutes then left hand for 5 minutes. Tremor at 4/10 until 1st dose of meds kicks in at 8.00. Remains at 1-2/10 level all day. Have not had a day like this for at least a year, maybe longer. Use CUE1 for 20 minutes in right hand twice during the day, and on lower sternum for 1 hour.

Zoom call with Fahd from Charco to see if he can fathom how to get my sync working again. Managed to get his computer to freeze, and bamboozle him with my madness when it comes to anything electronic – he was v. patient. 

Wonderful tremor-free day until 21.15 when someone ‘flipped the switch’. Tremor 7/10 until went to bed an hour later. CUE1 didn’t reduce tremor for this last hour when held in hand or on lower sternum, not even when using 2 CUE devices at same time at different speeds.

Day Ten

  • Number things dropped: 2.
  • Hours of sleep: 6 ½. 
  • Ambient temperature: 22 °C. 
  • Hours wearing CUE1: 4 (2 on sternum, 2 in right hand). 
  • Tremor: 4-7/10.

Drat, was hoping to have still hands like yesterday, but today the switch is at ‘on’ as soon as I awake. Tremor 7/10 so hold CUE1 in right hand and left hand for 15 minutes. No change, so take meds and tremor 4/10 all day (until 19.00 when 7/10).

Must remember that 4/10 all day is pretty darn good, and I am sleeping much better than I was. Realise didn’t use CUE for long yesterday, so will make sure to use it for more hours tomorrow.

Day Eleven

  • Number of things dropped: 1. 
  • Hours of sleep: 7 (AMAZING!!!!!!!!). 
  • Ambient temperature: 20 °C. 
  • Hours wearing CUE1: 5 (part of that time was using 3 devices at once). 
  • Tremor score: 1-7/10.

Tremor 6/10 on waking. Rechecked experiment of reducing jaw tremor with CUE1 when set to faster speed of 300ms at max strength (always have it at max). It reduces jaw tremor more quickly at this faster speed whether device applied to either palm, fingertips or lower sternum. I wonder if continuous vibration would work even better.

Did 40-minute cardio workout with CUE1 on right palm. Tremor 3/10 all day until 14.00 when tremor crept up to 7/10.

 Decided this was good time to try something different. Lay down in dark room – no sound – and put CUE1 on lower sternum, with second device in right palm both at same speed 300ms max strength. Jaw tremor reduced. Right-hand tremor reduced a little, but left arm 8/10. Decided to use third device in left hand. Calibrated all 3 devices to working at max strength at 300ms. Tremor in both right and left arms and hands reduced after 5 minutes to 4/10, so continued with the 3 devices for further 5 minutes then switched them all off. Tremor 1/10 (!!!!!!!!!) in both arms, hands, and jaw – tremor just disappeared – ran through to show son my hands. Played piano perfectly with all devices switched off for 20 minutes until tremor slowly returned to 7/10.

Tried to reproduce effect by repeating sequence of using 3 devices but tremor continued, drat!

Rest of evening, tremor 5/10 despite trying 3 devices again for another 30 minutes, and changing the pulsation length in case this would help, but it didn`t.

I do not remember ever being able to reduce the tremor to 1/10 from 7/10 without medication. I did not fall asleep – I was wide awake just lying down (sometimes becoming drowsy does reduce the tremor but that was not a factor here). Very curious.

Day Twelve

  • Number things dropped: 1. 
  • Hours of sleep: 7. 
  • Ambient temperature: 21 °C. 
  • Hours wearing CUE1: 3 (all 3 devices together one lower sternum, 1 right palm, 1 left palm) 
  • Tremor: 2-7/10.

Tremor not there when I woke but started at 4/10 after 20 minutes. Put on all 3 devices at max strength / 300ms for 30 minutes. Took normal meds and tremor remained at 2/10 all day, despite doing almost 2 hours of exercise at class (tremor usually worse after exercise).

Put on all 3 devices again for 30 minutes at midday, then again at 20.00 when tremor crept up to 7/10.

Decided to change the settings on the CUE1. In past, have used vibrating rings that are held in hands which you swing and realise that the rings have stronger vibration but are also pulsatile like the CUE1. Realise that would always use both rings – one in each hand – at same time, so both would get the stimulation at once.

Change length of pulse to 600ms on all 3 devices at 20.30, as it lasts the same amount of time as ring swing. Tried this level at 20.00 for 90 minutes, which allowed me to sew my tapestry despite no meds on board.

Day Thirteen

  • Number of things dropped: 2. 
  • Hours of sleep: 6 (!). 
  • Ambient temperature: 20 °C. 
  • Hours wearing CUE1: 1 only (one device in each hand simultaneously). 
  • Tremor: 4-7/10.

Woke with horrid migraine which knocked me out most of day, unable to do much and vibration of CUE1 not helping throbbing headache, so didn’t use it much today – sorry!

Did do a few trials with all 3 devices, i.e. one in each hand and one on sternum. I don’t think it makes much difference having the 3rd device on the sternum, but there definitely is a benefit with respect to my tremor if I hold one device in each hand rather than just having one in one hand only. If I hold one in one hand only the other arm tremors, which somehow makes the device-holding arm tremor more than if 2 hands were being stimulated together.

Now need to try with short pulse versus long pulse in both hands at same time.

Day Fourteen

  • Number of things dropped: 3. 
  • Hours of sleep: 4 ½ (not sure if due to migraine or not wearing CUE1 much previous day). 
  • Ambient temperature: 20 °C.
  • Hours wearing CUE1: 5 (4 hours with a device on each palm, 1 hour on sternum alone)
  • Tremor: 4-7/10.

Tremor score 6/10 on waking so put CUE1 in each hand took meds then went for walk. Brisk 40 minute walk, when devices switched off arms particularly right doesn`t swing. With both devices switched on both arms swing properly and feel much looser. Tried to walk with one CUE1 on lower sternum but did not seem to benefit my arm swing at all. Definitely seems to help arm swing and ease of walking when held in palms (300ms max strength)

Tremor 2/10 when meds working then as they wear off sudden change to 7/10 tremor and using the CUE1 then gives minimal but some benefit when in palm of each hand.

In summary, I have realised the following.

From the point of view of arm stiffness and slowness when walking, and at other times, the CUE1 does help reduce my symptoms.

With regards to my tremor, the CUE1 does help reduce jaw tremor, and especially helps reduce arm tremor when lying down, though this is not as consistent when I am upright.

I seem to be sleeping better when I use the CUE1.

So ends the second week of testing.

Thank you :)

Thank you so much to our beta-tester for all of their hard work, and for letting us share their story :). Please click here to read testimonials from some of our other beta testers.