Greetings from North Wales


#1

Hi from North Wales,
Am a retired cell biology researcher, an academic, in my early 70s. Diagnosed last August. Have been puzzling long and hard about 'where did that come from?'. And have decided that it was possibly three factors:
life long reluctance to sunbathe (psoriasis)
life long sedentary job, and little enthusiasm for excercise.
a genetic defect exposed by the above.
I am self-medicating rather than start on rasagiline. If there is sufficient interest I'll start a thread to explain the whys and wherefores. But it will be rather long......and It will take years to know if it works ( I hope ! ). It is my own experiment and not a recommendation. Chances are it wont work. But for me the journey will be fascinating science. Happy to share.
Peter


#2

Hi @PeterC
Welcome to the forum! You'll definitely find others here who also think of the journey as fascinating science and who take other approaches as well. The new forum has just been introduced so it might take others a bit longer than normal to find you but I'm sure others will be along to welcome you shortly.

I hope you find the community a useful and supportive place.

Ezinda


#3

Hi Ezinda, Thank you for the encouraging welcome -good to know the science is not relegated to a sideshow.
I need to find how to post images...cant see a button for attachments...its all new to me.
Peter


#4

Hi Peter,

It's great to have you here.
To add an image you can use the Upload function. It's shaped like an upward arrow in the editor menu above where you type your message.

You can also drag or paste your image into the editor. Happy posting!

Best wishes,
Edwina
Moderation Team


#5

Peter,

Good to have you on board.

My interest is in the measurement of Parkinson's.

John


#6

Thanks Edwina.
Testing it will accept a screencapture pasted from clipboard:


#7

Yes ! Brilliantly simple, we're in business !
Peter


#8

Hi John, That's very interesting. I am naive of drugs and self-medicating so have wondered how I might DIY-monitor hand-tremor or handwriting . Nothing beats a measurment ! Problem is the tremor is highly variable according to the situation..
I'd be very interested in hearing more about your approach. - have you a thread on here?
Peter.


#9

Peter,

You're right, tremor is very variable. I have written tests to measure tremor using the pressure pad of a laptop and alternatively using an accelerometer, but I find the results unreliable.

I find the test that is most representative of my PD is the side-to-side tap test. I have written a version of this test that runs on a computer:

http://www.parkinsonsmeasurement.org/toolBox/sideToSideTap.htm

Using just the index finder of first your left hand for 30 seconds and then your right hand for 30 seconds, you count the number of times that you can type q followed by p.

John


#10

John, I got this:

I am right handed, and the tremor is in the right hand. So I must try harder !

Will repeat the test every month , several times in the day., to try to detect deterioration.

Peter


#11

Peter,

Here's one of my graphs showing the impact of taking a dose of Stalevo.

You're not on medication, so it will be interesting to see if your results show any diurnal variation, perhaps linked to eating.

There's a definite learning effect with this tool. So, before using it seriously, I suggest you throw away the first 10 results.

John


#12

Hi John,
I will try that.
The effect of eating afull meal on reducing resting tremor ca half hour later is noticeable to me, quite obvious. It will be good to have numbers. My interpretation is that there is some insulin-resistance in the SN neurones or glia. Hence the exenatide story.

re vitamin C, I am cautious with VitC, and take it on an empty stomach never with or after with a meal, especailly iron-rich. VitC binds iron in the acidity of the stomach and greatly increases iron uptake from the small intesitne. The story with iron in the SN neurones is confused, but I take the view that an excess will be damaging. Free iron and the Fenton reaction will increse ROS , specificsllly OH radicals: so best avoided.
I also stopped eating beef, liver and black pudding to reduce haem iron ingestion.
Peter


#13

Hi Peter,

I am a Rasagiline Rat, happy gnawing away on 1mg per day. I am very interested in your views as seem very interesting and worth a read. I have recently abandoned Ropinerole in favour of as I lovingly call it, Larry-dopa ok at 25/100 3 or 2 times a day, dependant on activity.
Diagnosed nearly 10 yrs ago got a few cells left.
Take Care and look forward to your posts


#14

Hi Tee Hee,
My reason for not starting on rasagiline ( yet) is so I can monitor hand tremor as crude indicator of deterioration (or hopefully not). My DIY approach is focussed on restoring anti-oxidant cover using mainly vitamin D3 , other vitamins, selected minerals and endogenous metabolites. 17 at the last count. I shall be describing the experiment on my blog starting soon. It is experimentla, but scientists prefer to design experiments that stand a chance of working. We will see...........
I'll write the blog and we can discuss it on here.
Peter


#15

Thank you for your reply, John Gray devised a diet, interesting stuff. Food for thought, I personally believe diet is potentially a strong contender for at the very least , assisting us to remain as active and healthy as possible.
That has got to be a good thing, lets slow PD down , not ourselves.
Good luck on the start of your journey.


#16

My experience (12 years post diagnosis) has been that particular symptoms have started, developed and often stabilized. So, although I feel that my PD has steadily got worse, no single measure captures that decline.

For instance, to start with I had a small right hand tremor, but no left hand tremor. After, about 5 years post diagnosis, my right hand tremor was unchanged, but my left hand had developed an even worse tremor. But, since then the tremor has not changed much.

Another example, is that to begin with I had no drooling. It started after about 8 years, but hasn't got any worse for the last year.

John


#17

I had several symptoms that supposedly are caused by PD. Proximal muscle ( thighs) weakness/trembling, morning leg cramps, urinary urgency, loss of libido and ejaculatory failure ( sorry girls but science must out ), All cleared up within weeks of starting on D3/resveratrol/NAC. This suggests to me that they were the result of D3 deficiency acting directly on those tissues not the PD brain damage.
With my cocktail of 17, drooling is lessening as is, I think, the hand tremor, but very slowly. The placebo effect is always a confounding isssue with self-medication so it might be fools gold, We'll see. There are strong cell/molecular reasons for thinking that D3 plays a crucial role in contributing to idiopathic PD: it controls genes that combat oxidative stress. My blog will take us through it step by step

Peter


#18

How much D3 and how often?? Anything else work?


#19

6,000 IU D3 per day raised my blood 25(OH)D3 to 170 nmol/L . Now taking 10,000 IU pd.
D3 switches on: antioxidant proteins, nrf2 antioxidant pathway, Ca controlling proteins and ameliorates inflammation by lowering IL2 and Tnf-alpha.
Also take resveratrol, lipoic acid + acytl carnitine, inosien and the usual multivits etc.Similar to the Wahls Protocol for MS
Talk on wider benefits of D3 here:

Peter