Monitoring Parkinson's: Is there... - Parkinson's Movement

Parkinson's Movement
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Monitoring Parkinson's

CPT_Helen
CPT_HelenAdministrator

Is there anything you do to monitor your Parkinson's, e.g. self-assessment? diaries? list on the fridge of things to ask your clinician?

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over the 14 years of having pd i write on my computer when there is a change in my pd and also any drastic changes in medication..... it helps to look back and analyse any deteriation in my condition but mostly i ask myself when? why? and how things have changed to see if there is any pattern

CPT_Helen
CPT_HelenAdministrator

How incredibly useful to have an ongoing record - great idea.

Since I started taking medication (Ropinirole) last July (diagnosed 6 years) I have kept a PD Diary. It is just an A5 notebook, so most of the entries are a line with date and time of meds. Other things I include are meds / dose changes, different feelings, tremor bad, when I see Doctor, nurse, consultant etc. In fact anything that is not the "norm", I will write down, including now (having CBT sessions) anxiety isues and the cause. At the back of the book I record my Wii Fit balance game score increases to potentially align with medication increases! :)

If something changes that I note in my regime it may trigger a thought of occuring previously and I can look it up to observe for potential similarities.

CPT_Helen
CPT_HelenAdministrator

Brilliant you monitor with wii-fit - do you do it at the same time each day?

Pauli
Pauli
in reply to CPT_Helen

No, far from it (barely weekly)! I added some comments to a Wii Fit thread on PD Junction. Briefly, I had mot used my Wii for a long time and found that I was able to relatively easily beat my balance game scores, whereas previously I had struggled. The thought I had was that I had started medication in the meantime and it was having an effect that was not easily "visible" to me, but able to improve my "game ability". As I increase my dose(Ropinirole), my scores have still been improving slightly.

Pauli
Pauli
in reply to Pauli

I am still monitoring my Wii balance game scores (Football heading and Penguin fishing for this purpose) and recording them in my diary.

In a 30min session this evening I created 3 new record scores for me.

In about 10 games of heading, 5 of my scores made places in my top 10.

It will be interesting to see when I stop creating new high scores, when I have stabilised my meds.

CPT_Helen
CPT_HelenAdministrator

that's fascinating that it is a way of recording the less visible effects. keep me posted.Q

Pauli,

I hadn't thought of adding that to my diary but you are right, it is a good measure of balance. I will start adding it today!

Thank you

I have in the past, I no longer do. I have found that the more I monitor my condition the more problems I discover. I am a great fan of denial (a fair accomplishment after eleven years.) I'm doing OK and as long as I am I don't want any more medication, nor do I want to be referred to any other area of practice for fear they will find another incurable, dibilitating disease. I don't mean this as an indictment of physicians but they all want to find something to prove their worth. I just don't need anything else. Childish? Perhaps.

For the first two years i took photos of my face with the computers' camera. I was looking for the changes in my appearance and also I was monitoring my different moods that could be seen in photos. Now I do it very rarely, but still sometimes I take a picture and can easily see the change.

In the beginning I had a need to wrote of my feelings and thoughts, nowadays not so much, but I still write some things down, or a poem, so I have something throught which I can see the development of my desease and of my thinking.

Not sure where you are located, but my Neurologist is at OHSU. They have a web site where i can email my doc and access my records including test results. This allows me to report any changes and indicate the urgency if any. (I was diagnosed 1999)

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