Best way to track changes?: Hi friends, my... - Cure Parkinson's

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Best way to track changes?

PhinneySean profile image
29 Replies

Hi friends, my wife (62) was diagnosed with PD earlier this year. She has been experimenting with exercise, diet, meditation, supplements, etc and trying to see what works. She is putting off meds like levadopa for now, but if symptoms worsen in the future she may turn to those. Yes she is working with a doctor that specializes in PD.

With all the things she is doing and her symptoms changing day to day, it is hard to know what is doing what. Does anyone have a good technique for tracking/logging to help determine what is working and what is not?

Thanks

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PhinneySean profile image
PhinneySean
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29 Replies
park_bear profile image
park_bear

I self-score using the UPDRS. I skip the back pull test, item 3.12, and just put in an estimate for that item:

movementdisorders.org/MDS-F...

stocktiki profile image
stocktiki

Dr. Mischleys free app is good for tracking changes.

play.google.com/store/apps/...

LAJ12345 profile image
LAJ12345 in reply to stocktiki

Yes.

EmptyNester3 profile image
EmptyNester3 in reply to stocktiki

I have an Iphone but don't see an app from her...what is it called exactly please?

Edge999 profile image
Edge999

i use Mischleys free app. Its the best i found

jrg54321 profile image
jrg54321 in reply to Edge999

Better than Strivepd? I have been using strivepd for a couple of weeks now and it's nice.

Edge999 profile image
Edge999

Mischleys app is all inclusive of up to 36 symptoms self reporting. Strivepd i find only good for tremor monitoring. I do use both. Mischleys App for general status over time. Strivepd for tremor. Apple iwatch for sleep tracking.

johntPM profile image
johntPM

To measure shortterm changes (i.e. how you were before you took a drug and how you are 60 minutes later).

parkinsonsmeasurement.org/t...

John

PhinneySean profile image
PhinneySean

Thanks everyone - great suggestions for symptom tracking. But I am also interested in tracking what she is eating, doing, etc. Anything good for tracking those?

CSmith59 profile image
CSmith59 in reply to PhinneySean

Hi - I devised a spreadsheet that I print off daily to record my food, sleep, exercise, medications/supplements, and pain or body sensations. It’s been extremely helpful to determine what helps / hurts. On my sheet I have an outline of the body, and also hands & feet. If you’re interested perhaps I can find a way to get you a pdf of the sheet?

LeharLover62 profile image
LeharLover62 in reply to PhinneySean

For exercise we use an Apple Watch and for eating an app called Cronometer. But I mark notes on the spreadsheet as well related to exercise and diet.

JohnPepper profile image
JohnPepper

Hi. I and many others have had wonderful results for doing FAST WALKINGl Ordinay walking and running do almost NOTHING to reverse or even slow down the progression of PD.

FAST WALKING makes you use your conscious brain, which your normal walking does not. That causes the brain to produce a substance called G.D.N.F. which is Glial Derived Neurotrophic factor. Neurotrophic means NERVE REPAIR! That means that fast walking repairs the damaged nerve cells in the area of the brain which affects PD.

SO! ALL YOU HAVE TO DO IS TO WALK AS FAST AS YOU CAN FOR AS LONG AS YOU CAN, EVERY SECOND DAY, FOR THE REST OF YOUR LIFE. You may only be able to walk fast for a few minutes, at the beginning, but slowly you will buid that up to a maximum of 1 hour, every second day! Remember to always do some WARM-UP WALKING, before starting the FAST WALKING!

Within two months you will already feel better and you will continue to feel better, until your PD movement symptoms completely disappear.

There have been scienrtific studies done by the MAYO CLINIC, among others, which prove that FAST WALKING PRODUCES A HIGH VOLUME OF G.D.N.F.

Get wise and take control of your body and your healtth. If it is too hard for you to wlk, then you will continue to get worse. That is your personal choice!

If youcontact me I can give you a long list of people who have written to me to tell me how well they are doing. JOIN THE CLUB, THERE ARE NO FEES!

Youngoma profile image
Youngoma in reply to JohnPepper

I used to fast walk daily before I was diagnosed with PD. Would love to continue walking but unfortunately I have bad arthritis in my knee and it gets a lot worse with fast walking. Just about ready for knee replacement. Not my choice!!

JohnPepper profile image
JohnPepper in reply to Youngoma

You have my deepest sympathy. I cannot sugggest anything to help you, Im so sorry!

Kind regards

John

House2 profile image
House2 in reply to Youngoma

Me also, consider a recumbent bike, pubmed.ncbi.nlm.nih.gov/378...

Hikoi profile image
Hikoi in reply to JohnPepper

Another cut and paste. And no body yet that has reversed their PD like you claim you have done. Such a pity.

Shall we focus again on what was asked, i have gained some great suggestions, thanks to contributers

JohnPepper profile image
JohnPepper in reply to Hikoi

Hi Hikoi, I thought you must have left this planet. I assume you mean I keep repeating the same message. Bingo, you goit it in one The message is the perfect one. It is true and it works. It does what I have claimed and you cannot prove otherwise.

Hikoi profile image
Hikoi in reply to JohnPepper

Nor can you prove it works. No one by your admission has reversed PD as you claim to have done. That must be very disappointing. Nor has any research shown fast walking reverses disease. (I dont accept vague claims about this or that clinic.) All exercise including fast walking is beneficial but not Disease modifying. .

JohnPepper profile image
JohnPepper in reply to Hikoi

I know people who have written to me to tell me they are getting better with the walking. Asit takes time to get to where I am, I don't expect anybody to write and tell me, but I do know some.

Hikoi profile image
Hikoi in reply to JohnPepper

Just saw this on linkedin.

youtube.com/shorts/1O7Lc7uc...

LeharLover62 profile image
LeharLover62

I use a spreadsheet chart with meds and therapies down the left and date of the month across the top. I print a new one every 2 weeks and keep them in a binder. I still reference info from years ago sometimes and highly recommend tracking somehow! The Mischley app looks interesting too..,I like the printed version because caregivers can also update it when they come to the house.

EmptyNester3 profile image
EmptyNester3 in reply to LeharLover62

Are you able to upload a copy of your chart?

LeharLover62 profile image
LeharLover62 in reply to EmptyNester3

Let's try...it's in Excel format though, can anyone access it?

docs.google.com/spreadsheet...

pdpatient profile image
pdpatient in reply to LeharLover62

I was able to get it. Thank you very much.

Esperanto profile image
Esperanto

Almost all PD slowing factors have a long-term impact. So it is a guess which of the undoubtedly many means of struggle deployed have an effect and to what extent. It's more of a matter of intuition. Is it also wise to focus on 1 therapy? Gradually it is clear that it is more an integral all-inclusive package to improve your lifestyle. I myself constantly apply the simple finger tapping test to adjust my medication. At the same time, it also gives me an idea of what works negatively and positively in your daily life. But short-term effects are mainly stress-related.

healthunlocked.com/cure-par...

In the long run, my situation can be mapped very well with the PRO-PD app from Mischley.

JohnPepper profile image
JohnPepper

Hi Daisies

I have been in the position where I was barely able to walk, not beccause I was crippled but because I had never done much exercise and I worked all the time.

I share you situatiation, not knowing anything about you. If you uanb;e to move in any way, then you have my deepest sympathy. If you can move at all then do whatever you can as hard as you can, every second day and see you r condition improve.

Please tell me more about your self!

John

Hikoi profile image
Hikoi in reply to JohnPepper

John

How can you write I was crippled … because I had never done much exercise and I worked all the time.

When you have also written that you worked out in the gym for 90 mins a day for years.

Which is true.

JohnPepper profile image
JohnPepper in reply to Hikoi

Hi Hikoi. Welcom back!

You are looking at a time-frame of 32 years. What does not fit?

Hikoi profile image
Hikoi in reply to JohnPepper

So you reckon you have had PD 32 years or is it 61 years measured from ‘first symptoms” And now you have no disability and no obvious symptoms.

I think you have been misdiagnosed. What’s more I think you were used by Doidge to sell his book. But maybe you got some royalties because he would have done very well from book sales.

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