to the folks in UK, CUE1

[Furch]

Anyone over in UK from this group have any experience with the CUE1 devices, the Probiotic PS128, Fecal transplant, Bio-light, focused ultrasound, B1 or any other up and coming advances toward PD

Thanks for accepting me as a member

[Farooqji]

I have heard positive feedback of CUE1 but they declined to sell it to me due non UK resident

[KERRINGTON in reply to Farooqji]

Check out the viraball from amazon..it gives me relief.

[Farooqji in reply to KERRINGTON]

has it impact on rigidity and Tremors both?

[KERRINGTON in reply to Farooqji]

For me a few hrs a day of tremor relief, and less rigidity. Infact, I noticed my arm was swinging the other day.

[Farooqji in reply to KERRINGTON]

Do you have this one

walmart.com/ip/FitRx-VibraB...

[KERRINGTON in reply to Farooqji]

No, I have viraball. amazon

[chips29 in reply to KERRINGTON]

Could you please link to it? I can't seem to find it anywhere.

[KERRINGTON in reply to chips29]

Sorry, I have this beautiful apple computer that requires a scientist to operate...can't do links . Try looking up vibrating physiotherapy ball, or viraball o amazon. Check all for departments.

[park_bear in reply to chips29]

Here is the link

amazon.com/Viraball-Physiot...

[Zella23]

My husband has the Cue 1 been using it since August. Wears it from about 10 in the morning until bed time. It has improved his step and he now has a normal stride when walking, now swinging his arms normally. He doesn’t have gait freezing, and has never had that as a symptom.

Dyskinesia not quite so bad from meds although he s still on a low dose.

When we spoke to Charcotech they are trying to take it to USA and are upping their production but I know they still have a waiting list.

He takes B1 too.

[Buckholt in reply to Zella23]

what settings is he using?

[Zella23 in reply to Buckholt]

He’s experimented with a few but seems to stay with strength 100%, pulse length 500 ms, rest length 500 ms.

[LondonPD in reply to Zella23]

Hi My husband’s Cue 1 arrived yesterday. Interesting to read these comments. We are keen to get going.

My husband has a pacemaker but our research so far indicates this isn’t an issue. He is having a pacemaker check this week coincidentally so he plans to be wearing his Cue1.

Any more guidance for new users? Does everyone take it off before bed?

[Zella23 in reply to LondonPD]

it needs to be charged up every night. It lasts all day but not sure it would last all night as well! Experiment with the settings and where you place it! My husband had tried three different places on his chest and favours one place more than the others. All the best!

[BootsOn in reply to LondonPD]

I've had my CUE1 since February and it's done wonders for my balance. I take it off at night too.

[jeeves19 in reply to Zella23]

Zella. Does the constant buzzing not get on your nerves a bit?!

[Zella23 in reply to jeeves19]

funnily enough, I do hear it sometimes but it doesn’t bother me and my husband says he no longer hears it. Others say whose phone is on silent but if it helps with walking and balance does it matter! We re in St Lucia at the moment on holiday so my husband has brought it but with water activities it’s not practical. He and I have noticed the difference!

[jeeves19 in reply to Zella23]

Can I just get one thing confirmed about the sound just so I'm confident mine isn't on the blink! 😂. Does your husbands make a continuous buzzing/purring (take your pick!) or does it sort of throb with a gap in between each? Thanks Zella, Appriciate your time and enjoy St Lucia.

[Zella23 in reply to jeeves19]

it can do both of those depending on the setting it’s on. I don’t think you’re on the blink! Experiment with the position on your body too! My husband tried several areas around the chest and prefers it slightly to the left or right near his collar bone! Good luck with it.

[SylvesterB in reply to Zella23]

We are on the waiting list for CUE1. Can you get your money back if it does not work?

[Zella23 in reply to SylvesterB]

I think it says on their website that you can.

[Eddie129]

I take ps-128 probiotic (Bened life) and it’s helped tremendously. Started in March. I’m completely regular now and no stomach issues. Took about 3-4 months to consistently work. I also just started b1. That’s starting to show improvement too. (Less fatigue and aches) bought naboso neuro insoles and haven’t noticed a major change with gait but it’s only been a week. I find them comfortable and my therapist noticed I was walking better (I personally can’t tell so maybe slightly helps?)

[Bluebell2022 in reply to Eddie129]

Hi Eddie, where are you getting PS128 from? I have been trying for months to get it but no luck. I live in the Uk

[Eddie129 in reply to Bluebell2022]

I get it online. The company changed names three times since I started using it. I’m in the states sorry I know that this thread was for UK people but I saw the probiotic PS128 listed and I just had to jump in. I’ll send the link I don’t know if they shipped the UK or not. Hopefully they will soon it’s good product. Clinical trials have been done on it as well. benedlife.com/

[SylvesterB in reply to Eddie129]

Are the insoles helping?

[mach262]

Hi Furch, I'm wary of some of these solutions unless there are firm, independent reviews or properly audited results. I was told that CUE1 didn't work for Parkinsonian tremor. Most reviews I read for DBS are usually good but the risks can be life threatening. MRI guided ultrasound is performed routinely in the US and parts of Europe, especially Spain. The UK seems to be lagging and there are awful patient stories coming out of Switzerland. It's not all bad but with drug resistant PD, the choices are more limited. Hope this helps

[Furch in reply to mach262]

thanks for reply and

[Stoxy in reply to mach262]

There are also fabulous stories for focused ultrasound coming out of Switzerland - sonimodul clinic. I’ve only really read one bad review. Check out the focused ultrasound group on Facebook. X

[JerryinSATX]

I'm not from the UK.but PS128 only upset my gut.

[CyclingGadgetBoy]

Hi Furch

My initial pack of PS128 has just arrived within the last hour so quite excited. I did try the CUE1 device but did not get any discernible benefit from it. Pity but can't expect everything to work for everyone. I have been trying out the infrared LED lights as described in youtu.be/RscgHLusImc(Not working as expected?) . I went for the DIY Cossack hat and originally used some deep red LED lights. Have noticed that my sense of smell kicked in a few times and that my hair appears to be growing quicker. Ordered 670nM and 810nm LED lights so will be building additional hats so that I can experience the specific wavelengths, fingers crossed for further improvement.

[Sun_and_flowers in reply to CyclingGadgetBoy]

Hi, CyclingGadgetBoy, any updates on your testing of additional hats? Thanks.

[Furch]

Yes: keep trying and sharing your experiences.