This morning after wearing this device for 6 days hubby said I think this is making me feel a bit better. He has begun to reset it to run a cycle himself and is finding it very unobtrusive.He didn’t want to wear it around his ankle to bridge though as he thinks it looks like a jail monitoring anklet🤣
He was initially very pessimistic and resistant to wearing it and now likes it. That’s a start!
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Thanks for sharing, I'm very interested in Apollo and I think I'll give it to me for Christmas. I ask you if you have noticed any benefits regarding Parkinson's specifically. Thank you very much.
Well it's probably a bit early to tell. I bought it for his anxiety as he has been very bad this new Zealand winter and since starting madopar. He has recently been so anxious he had been suicidal. He seems to be feeling a little better this week. I will keep reporting progress. If I can get him to want to do anything but play bridge all day on the PC it will be a miracle!
Thank you, I wish you well.
Fed, visit their website before spending the money and register for their newsletter. You should get a $50 discount code.
BTW, I wrote to one of their main people about getting a loaner for a month long trial. I got no response. Instead, I got more coupon emails😂
Friendly advice and observation for the newly diagnosed as well as the recently diagnosed, the first few years after diagnosis is both brutal and confusing. The body is also very forgiving. You can get away with a lot. However, later on ( how long, depends on every individual patient) for everyone and I mean everyone, the "fun" starts with a vengeance as well as a mixture of resignation and resilience.
If any patient is generally about less than 7 years into diagnosis, any results are generally taken with a grain of salt.
But good luck with your experience and the experiment and I wish you well.
Thanks. I think at the moment his symptoms are made worse by stress so if he is less stressed he feels better and will do more which may help other symptoms. We will see
Does he play on Bridge Base? I’ve recently become quite addicted myself. I think it’s good for my memory, tho it does use up a lot of time!
Yes he does. His name is Hawkeye.
Just make sure if you sit a lot you get up regularly to move your shoulders, neck, fingers and arms. I am convinced he gets worse when playing on line for long stretches and he has started to develop chicken wings where his shoulder blades stick out from his head leaning forward.
Thanks for sharing. Best wishes for even more progress.
How is it going? Am thinking about getting this for my daughter (and maybe trying it out on myself). I don't like how they report the research on the website - they talk about clinical trial data that has not been published in a peer-reviewed journal. OTOH it looks like it could work and it seems to be doing so for your husband, which is great news.
For anyone interested in this sort of thing:
There is a competing product, the Doppel that does have a published trial:
nature.com/articles/s41598-...
There's also the TouchPoints product, which is two units; they are not water resistant and that is apparently an issue for some users.
I've also been considering the Lief, which sticks to the chest with ECG electrodes and prompts the user for HRV biofeedback breath training. A lot more cumbersome, but I think it could be more effective over the long run as it can teach the user how to manage stress without the device just by altering their breathing.
I've been comping a list of these types of wearables in a spreadsheet - it is not complete and needs a lot of work:
docs.google.com/spreadsheet...
Currently I'm having her try resonance breathing exercises using Elite HRV; it is not working for her for some reason. Her HRV does not go up during sessions; mine increases by around 6 points.
This video from Elite HRV explains how to do it:
I made a worksheet based on the video
docs.google.com/spreadsheet...
I tried TouchPoints primarily for tremors. Did nothing. Returned them
That's a shame. Did you notice if it helped with your mood at all? I'm interested in these devices for anxiety reduction. I'm hoping long-term there may be benefit to autonomic function.
No none whatsoever.
Okay, won't try that one. Thanks for the info.
Thanks, I love a good spreadsheet🤣.I have also tried the revitive revitive.co.nz which is tens or ems. He enjoyed but it was a bit cumbersome requiring me to put the gel pads on his back for tens. He needs to get up and down to urinate all day so it isn’t mobile enough. Also putting his feet on it he felt it was an uncomfortable position to sit at as he is tall so it makes his feet too high. For me that would be a bonus with my short legs! The Apollo is much better as it is mobile.
I am hoping that if he feels up to it he can start trialing the gloves that you can connect to the revitive as I feel his main issue with loss of use of his hands might be a structural issue. He sits for hours hunched over a screen playing bridge on line and I think this has caused the stiffness of his shoulders and hands. The gloves stimulate blood flow to the fingers so I feel it could be good for them. But he doesnt enjoy getting them on and off as they are quite tight and it sends him into a panic.
I've got a small TENS / microcurrent combo unit that can be clipped to a belt & it used a 9 volt battery: tenspros.com/intensity-micr...
I don't use it as much as I would like, though. I have gloves; I had hoped to use it on the microcurrent settings for rejuvenating my hands, but I never seem to get around to using it. I'm also not doing the microcurrent facials these days and I'm afraid it is showing. I have problems with my hands and forearms 'falling asleep' & I think that should really be motivating me to use on my hands.
The revitive device looks like it could be convenient for some people - you could just put your feet on it while watching tv. I will add to the sheet.
Well it’s been a few weeks and after the initial reluctance to put it on he has been happily wearing it every day and resetting it on rebuild and recover when he wants it on. He isn’t sure if it is helping but he hasn’t needed to take any clonazapam for weeks and he seems a bit calmer. He joins us in the living room at night now which he wasn’t doing before and even came out to see his son and grandson on Christmas Day and sat and chatted. Previously when they visited he didn’t want to see them and hid in his room.
Now we have muddied the waters a bit in this experiment and for the last 2 weeks the neurologist has had him start on a new drug which is probably adding to the effect but he was noticeably calmer with just the Apollo before taking it and doesn’t seem anxious much at all now. He was using the Apollo from the end of November so about a month now.
The new drug is Kemadrin and he has been taking 1/4 of a 5mg tablet at night for a week, then 1/4 morning and night. It is also called procyclidine. He is supposed to keep increasing it but I think he will stay at this low level for a while as he is always an over reacted to any drugs and always gets all the side effects of new things and the side effects of this one don’t sound good.
My daughter has also been liking hers. She is 19. She gets quite anxious especially in social situations but she finds it is helping her with it set to “social and open”. She says it is subtle but she thinks it helps. She has taken on a holiday job working in a restaurant bar and hasn’t done this type of work before and was feeling very stressed and distressed when she came home. She said days she has been wearing it she has had better days.
Very encouraging news. And wonderful to hear about family visiting for Christmas and restaurants being open. NZ is a great country, I envy you.
Yes we are very lucky here. Things are pretty normal for most people but I fear this new strain might get in through the borders as it is so contagious. People are too complacent I fear.
Anyone experience a wearing off cough/shortness of breath?
Disappointing Consultant appointment
Need Away from Home Care
