PD Irreversible?

[Esperanto]

After 2.5 years of PD diagnosis, I still get the feeling that the doomsday scenario outlined at the time had a serious misconception and even a counterproductive effect on the disease. After seeing Laurie Mischley's very inspiring video and doing her PRO-PD survey, that seems to be the case for me. My score of 660 turns out to be an average value at this stage. Out of curiosity, I retroactively filled in the situation of a year ago and scored considerably worse at 1005. It's good to realise that in a year you can tackle so many annoying symptoms partially and sometimes completely. It gives me an extra drive to actively tackle the PD (and PN)!

But I also realise that I could never have achieved that without you at HU. First of all, to know that you are not alone with your PD problems and of course the wealth of knowledge and information that is offered. Even the (sometimes only at first glance) nonsensical contributions force you to argue it out and think out of the box. Invaluable! Infinite thanks for your help. 🙏🙏🙏

The tool: redcap.bastyr.edu/redcap/su...

[kaypeeoh]

Tried Dr Mischley's survey. The sliding bar was annoying. I'd prefer numbers. But that's just me; In general when I'm asked about pain level. I reply 4.6 or 4.7. Generally they get irritated if I give them three numbers even though 4.64 feels more accurate. I thought I was doing well but it came back at 972. At last, a real number! But not a number I'm happy with.

[Esperanto in reply to kaypeeoh]

The sliding system is indeed not ideal for trembling fingers 😅 but 2 digits after the decimal point would ensure that I would probably still be dubbing what I have to fill in now. Doesn't really matter either. It is important that you can see your own development. You seem (after about 6 years of troubles?) to be reasonably on track and still in the zone 'good' in the quality of life… As a very active HU participant, do you feel that there is (occasional) improvement and that without your efforts your situation would be much worse?

[PDTom]

I have also had Parkinson's for 2.5 years. My number is 115 on the test.

www.parkinsonclub.de

[Esperanto in reply to PDTom]

I see your lonely dot at the bottom of the schedule… 👌 Are you sure you didn't cheat? Even before my diagnosis I was above 115! 😀 But if anyone takes the challenge seriously, it's you. Do you have an idea what your situation was like a year ago?

[PDTom]

Yes, maybe I filled in a little optimistically!

Maybe I have a value of about 150.

It has not changed much since a year, sometimes a little better sometimes a little worse.... lately a little better... I remain on it I continue to optimize!😀

[kaypeeoh]

I retook Dr Mischley's test and scored 620 or so. Quite a lot better than the 900 or so the last time I took it.

Yesterday I had a Tai Chi class, It's sponsored by Heartford Health, where my neuro works. Yesterday there were only two people in the class, me and a guy named John. John is my age but still has a job. He said, "I'm like you; I don't have no signs really." He said he's been going to a PD support group but plans to stop because the members are so sick it's depressing to be around their whining. If anything John's symptoms are worse than mine; He has tremor in both hands while I have tremor in one.

Maybe I can ask the neuro about Dr Mischley and the DAT scan. Her sliding-bar test makes no mention of the DAT scan.

[Esperanto in reply to kaypeeoh]

A DATscan could backfire.'s In addition to the nocebo of the neurologist's blunt reaction who lets you know when diagnosed that there is nothing to do about PD at all, you naturally have the strange PD phenomenon that we are hypersensitive to placebos. You could lose that advantage with a new scan 🙂

All in all, your curve looks 👍 for your PD age!

[Turnipbarrow]

we just did the survey but don’t understand how you come up with a number. Do they send it you ? Thsnks.

[Esperanto in reply to Turnipbarrow]

If you use the website (via the link in my post), you see after making questions at the end the total in the rectangle of: Cumulative Score= Sum of all variables(Each variable scored 0-100) 

You always get this even if you don't share your data with PRO-PD

There is also an app. I still want to download it, so I don't know if it works the same way.

[Turnipbarrow in reply to Esperanto]

sorry to bother you. We did use the link an filled out the survey and the score box was empty .

[Esperanto in reply to Turnipbarrow]

Strange, Usually I avoid new apps, but in this case it is definitely recommended!

[Ashti in reply to Turnipbarrow]

This happened to us once. The bar must be adjusted for each question or it thinks you have not answered all the questions. Once we went back and moved each bar ( sometimes right back to its starting point as needed) then we got our score. So this might be what is happening with yours?

[kaypeeoh in reply to Ashti]

I had the same idea, Leaving some responses un-touched meant no answer once I was done. When I went back and moved each bar slightly at the end the result had popped up in red. Someone color-blind might not be able to see it.

[Esperanto]

I just installed the app and it is much user-friendly. The value scroll function is better (also maybe for Kevin). You get a clear overview of your situation and this seems very useful to me to monitor the development of your PD. You can also quantify the impact of lifestyle changes with this. Even though it's a snapshot of the past week, it shows that big changes can actually take place. I just made a new update and now came out at 286, so more than a halving in a week!!! That is indeed true of how I feel at the moment: excellent. No big change in my diet / supplements, at most more regularity, but a very positive stress-free period. In her video, Mischley already pointed out the importance of that. The impact would being equivalent to 7 consecutive days of intense exercise…