Teacher : Hello All, Just wanted to... - Parkinson's Movement

Parkinson's Movement
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Hello All,

Just wanted to share.

I recently added Sifrol to my treatment plan. It took about 2-3 weeks before I managed to get the dosage and timing right to the point where I felt better.

Towards the end of August I was offered a job in Jakarta as an English Language Tutor, I jumped at this opportunity without really knowing if I could get through the day uninterrupted by the symptoms.

I decided that I would not eat from when I woke up in the morning until my last lesson had finished, I have not misssed a class, I have felt quite dizzy at times and my legs have become restless but, I have managed.

I don’t understand this condition, if I don’t eat my symptoms become negligible but, sooner or later I have to eat and within an hour or two I feel unwell.

Any comments will be most welcome.

6 Replies

While there is generic meds and supplements that work for PwP, I've also heard it said several times that there is also an individual aspect to PD. And this is where what you narrated about you gets interesting

Because for me it works the opposite way round. Eating properly and gaining weight has been helping me to reduce my symptoms. Having a low BMI (19ish) might explain this.

Thiamine B1 has helped eliminate face mask and constipation issues, perfect my balance, increased my energy, completely eliminated embarrassing drooling... in fact everything apart from tremor and writing (both of which seemed to be getting worse with occasional stiffness on the neck) and some slowness.

This is where weight gain comes in. Since I started gaining weight tremor has definitely stabilised and even seem to be reducing (still in the process of pushing my weight up and putting myself under observation)

And I must also mention that tailored exercise has also impacted positively on me

Thus my advice is experiment a lot and see what works for you

If less food works positively for you ... great.. But don't stop there, you want net improvement. Try to add B1 hci - experiment on dosage and see if it works for you. Also try various exercise regime. Try mucuna. Research other supplements and experiment on them (safely and with caution)

Best of luck

in reply to Grumpy77

Isn’t this disease bizarre! I have lost over 40 kg in 3 years, I was not actively trying to lose weight. However, it must be said that I was too heavy and the weight loss was required, now I need to stabilize my weight. Thiamine will be my next step but, I need money first.

I appreciate your courage to accept the teaching job. The reason is that teaching is very tough and challenging with PD. One of our forum members diagnosed with YOPD had to take early retirement from teaching after 2 years of diagnosis.

BTW when were you diagnosed?

I was diagnosed in 2005, but I have been undiagnosed too in 2014.

I am having a similar experience. I’m much better if I’m a bit hungry. In particular better if I don’t eat protein but carbs too. It doesn’t leave much to eat! I wonder if that is in an indication that it’s caused by gut bacteria?

I’m impressed you can handle the stress of both teaching and Jakarta, but it sounds fun.

in reply to Astra7

The hardest part has been the motorbike taxi ride. It is a scary activity at the best of times. Thank you for your reply

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