PKG smartwatch available to NHS Parkinson's patients UK

[Daisies22]

Hello,

Just learned about this (courtesy of Smokey purple):

pkgcare.uk/april-2022-parki...

I would be grateful if PwP who have used the smartwatch share their experience. Thank you.

[hmm777]

I have worn the PKG watch on six occasions over the past few years, for one week each time, as part of a clinical study run by my MDS.

There is not a great deal to tell. You receive it in the mail, wear it continuously for 7 days, then mail it back in a pre-paid box. The data it collects is transmitted electronically to your doctor (you don't see it yourself). Your doctor might go over it with you, but mine generally did not do so in any detail and frequently did not even mention it. He has used the movement data on occasion to increase or decrease my C/L dosage. He also used it once at the beginning to encourage me to exercise more late in the day (at that time I was doing all my exercise early in the morning).

The watch itself is unremarkable -- it looks like an ordinary, if large, digital watch. The patient's only interaction with it is to put it on when it arrives and then confirm that he or she has taken the appropriate meds when the medication timer buzzes. You do this by sliding your finger across the face of the watch from 9 o'clock to 3 o'clock.

My only complaint about the watch is that if you wear it in the shower (and you are supposed to) the water moving across its face will repeatedly trigger the "medication confirmation" I just mentioned. The first time I wore the watch this happened several times, and my doctor told me "You've got to stop taking extra doses!" I explained what happened and thereafter kept a log of all the erroneous med confirmations, which I e-mailed to PKG at the end of each weekly trial. That got pretty tedious (it happened literally every time I took a shower) so I started taking it off before bathing and have done so ever since. Just a rebel, I guess.

[Daisies22 in reply to hmm777]

Thank you for your detailed response! It is helpful to know what to expect from this particular watch.I don't want to occupy too much of your time, so just one final question. Did this watch give more clinically useful information compared to the Apple watch? Did the adjusted C/L values work any better?

Thank you again.

[hmm777 in reply to Daisies22]

I can't compare it to the Apple watch, I'm afraid -- I have never used that one.

[Daisies22 in reply to hmm777]

Thank you.

[gwendolinej]

In my husband’s case, the watch indicated that Madapar was not working well. We saw it at his neurologist’s rooms on his computer. It was in the form of a a graph, and showed that the Madapar had only a very slight effect and then only for a very short time. At no time did he feel on and off periods , as so many members mention.

Gwendoline

[Daisies22 in reply to gwendolinej]

Thank you for your reply. This is precisely what I experience with Madopar! I also have not experienced on and off periods. In my case, I feel much better when the medication starts to wear off. I am unable to make any voluntary movements while the concentration of Madopar is rising or has reached its peak value. This leaves me bedridden for 23 out of 24 hours a day, it is that bad.

Did they change your husband's medication, and if they did, does the new medication work better for him?

Thank you.

[gwendolinej in reply to Daisies22]

Yes, they did change his medication. He was attending the Movement Disorder Clinic at the Royal Melbourne Hospital, here in Australia. One of the neurologists suggested trying the Neupro Patch, as he’d seen it work. A few weeks later my husband was functioning normally and his diagnosis changed from Lewy body dementia to PD. His extreme apathy had been misread as cognitive issues. The neurologist’s reaction was “I’ve seen it work, but never like this”.

Gwendoline

Ps please keep us in the loop

[Hidden in reply to gwendolinej]

What great news for your husband. Did he have any issues with the heat and the patch? There are warnings on the box.

Also how many mgs was he talking. Again how wonderful for both of you

[gwendolinej in reply to Hidden]

No, no side effects. The other side effect can be addictions, as in gambling, overactive sex urges, etc. My husband, Alan’s Neuro says that he has had a patient with one of these issues. I get the feeling that some neurologists won’t prescribe it because of this. That is crazy of course. All they have to do is to monitor the patient. The trouble with that is so many of the neurologists don’t really get involved with their patients or see them very often.

Alan was on 8mg. patch for many years. It did stop working, which is unusual apparently. You do need to move the patch often, or you end up with lots of red patches on your skin …..heat ?

[Hidden in reply to gwendolinej]

I do get red patches, but I use mineral oil and a cotton ball for relief. They go away in a day or two. I’m sorry Alans Neupro stopped d working. What does he take now and how is he doing?