Just Starting Out

[Biff69]

Hi all I'm new here, I have been diagnosed around 6 months now (just before my 60th birthday), It is very mild & confined to left side, as I'm right handed I probably wouldn't have noticed yet but I'm a saxophone player & my left fingers started to drag when playing & practice seemed to make it worse. Saw my nurologist & had a DAT scan but not on any meds yet, taking vitamins & trying the mannitol & B1 stuff, concerned because I have been on a diet for the last couple of weeks & I have just read that B1 needs carbs to work, can anyone confirm or deny this for me please? For now just keeping a positive attitude & considering changing my instrument to one that only needs my right hand to play.

[ruff1]

I have read that vit b1 needs carbs to work effectively ( one of the posts on this page ) if you don’t mind me asking what diet are you on that means you are not eating carbs? 😀

[Biff69 in reply to ruff1]

I was going to try a ketone diet as I saw an article on YouTube youtube.com/watch?v=8raIvT8...(Not working as expected?)

that suggested a high fat low sugar/low card diet can be helpful with PD

[ruff1 in reply to Biff69]

I’d think very carefully about a diet that restricts a food group.

[ruff1]

Retry - is the person that’s has posted about carbs and Thiamine 😀

[Hidden in reply to ruff1]

The comment was about balance.Protein and good fats are equally important. No extremes. Personally I would not mix a Keto diet and high dose Thiamine

[Biff69 in reply to Hidden]

Thanks for the reply, is there any specific reason or just a gut feeling not to mix the two?

[ruff1 in reply to Hidden]

I totally agree with you a balance is def the best. My husband is the one with pd and we have tried gluten free which we heard would help with symptoms but we found that it is too restrictive and he was miserable on it . Now we eat as much fresh food as possible, nothing is ‘ bad’ but if he wants cake /biscuits I make them , we try to avoid processed as much as possible. You have to enjoy food / life as stressing over food will make symptoms worse .

[Biff69 in reply to ruff1]

Your right, sometimes diets need to be put in the 'Life's too short' box

[kgold in reply to ruff1]

Hi ruff1 - I, too, have a husband with PD. He has been gluten-free for about a year now. There are so many more options to eat GF now. I make 3 different muffins that satisfy his "bread" desires - a sweet potato muffin using brown rice flour and coconut flour, a banana buckwheat muffin, and a cheese muffin using Bob's Red Mill GF 1 to 1 flour (slightly reminescent of Red Lobster's cheddar bay bisquits). Over the weekend we had a pre-made pizza with a crust made with coconut & tapioca flours. I added some veggies and extra cheese - it was delicious.

I would also suggest you consider reading Grain Brain by David Perlmutter, MD (a video of his patient before and after glutathione was posted on this forum). For a contrasting view point read Eat Wheat by John Douillard, DC.

Finally, totally agree on eating a more balanced diet with predominantly "real" food!

[Despe in reply to kgold]

I grew up with Mediterranean diet. I believe it's the best of all!

[Hidden]

The RDA for Thiamine was calculated on the basis of calorie intake. We are taking way more than the RDA.

The Krebs cycle which powers every cell in the body burns glycogen. Thiamine is fundamental for this

[Hidden in reply to Hidden]

The liver can build glycogen from fat and even protein but the Keto diet sets up the body to self clean. It’s a valid alternative therapy favoured by Functional Medicine

[JohnPepper]

Hi Biff. I may be out of line here, so please forgive me if what I am about to tell you is not the help you are looking for.

If you look at my PROFILE you will see that I have been able to overcome many of the Pd movement symptoms and have lived, medication-free since 2002. I am now 83 years old and have lived a normal life again since then.

Taking the medication route is the easiest way to go, just popping pills every day, but other than MAOb inhibitors, none of them do anything to slow down the progression of the Pd. They are designed to treat the symptoms, not the Pd. They all have serious side effects, but if that is the way you want to go then that is YOUR CHOICE.

If you do want to do something that can reverse many of your Pd symptoms then look at my website, reverseparkinsons.net and contact me. I will send you my videos and a whole lot of helpful information, free of charge.

Take action now, before it is too late!

[--Ton-- in reply to JohnPepper]

Please help us all by joining foxinsight.org or foxtrialfinder.org. A cure is on its way.

[Despe in reply to --Ton--]

"A cure is on its way."

Heard it so many times! A lot of money invested in organizations like MJF, but where is the cure? Money will keep pouring only for the benefit and financial gain of all employees involved in such organizations. Why would they want a cure??? No donations, no employment!

[ddmagee1]

Mine started out one sided-PD-then progressed. As a pianist, I found that, after my neurologist put me on Sinemet, I was able to play piano much better, without shaking fingers etc., because the tremor and stiffness has subsided. Just a thought for you, in making up your mind about playing an instrument.

[Coot18]

Welcome to the tremor club, 8 years since my diagnosis.

I wish I had seen this right away.

pdrecovery.org/wp-content/u...

if you read this paper and the other stuff on her website

she has been working with Parkinson's people for over twenty years

she learned the hard way she cannot help folks

that have been taking dopamine replacement drugs for over three weeks

not convinced it works

just wish I had known about this option early on

so I could have discussed with my doctor

Just hoping to get the word out so people will at least consider the option

before certain drugs

Love > hate

[jimcaster]

Welcome. I am fairly new to this site as well and I have found it to be extremely helpful. I am also taking thiamine and have mild symptoms. I am eating mostly a paleo diet with relatively few carbs and I believe the thiamine IS helping me. I hope it works for you, too. Good luck and welcome!

[jennrich]

Everybody has his/her own opinion, but if I were you, newly diagnosed, I would definitely go first and foremost to the internet and research everything you can about the Hinz Protocol developed by Dr.Marty Hinz MD, also known as amino acid therapy for Parkinson's. Find a practitioner who has been trained in this protocol and has several years experience. It should not matter where they/you are located, because most do treatment via Skype. This offers the most (only?) hope in my opinion. I would also avoid pharmaceutical drugs as long as possible and research the dangers of carbidopa use. That is just my 2 cents. Best of luck to you. (And don't forget that YOU are your only advocate! Nobody else has time to care.)

[Juliegrace in reply to jennrich]

Are you on the Hinz protocol? If so, how long and when were you diagnosed? What are your symptoms? Generally, when people here recommend a treatment they share their experience.

[Annie81963]

Hello and welcome Biff69. I would recommend reading Every Victory Counts Davis Phinney Foundation. Very informative and you can download it for free.