Hi, TRixiedee,

I am in the Midlands, UK. I feel sure that if you contact the secretary of the neurologist that you have seen, that he/she would be able to bring forward your appointment. Is your neuro at a big hospital? If so it should be easy to get the number. You are entitled to do this, to request an appointment be brought forward. Just tell it as it is, that you are no longer managing as well as you did, and you are having this difficult enough to feel that you would like to see the neuro asap and start on medication. It sounds as though you feel you need to take this step soon, and you have done what you can without medication.

Please feel free to PM me. I visit NT daily so will see your message, and if you have any questions I will try and answer them, or find out........

Other things that I can think of immediately that might be of use.

There is a helpline number on the Parkinsons UK website.

http://www.parkinsons.org.uk/advice/helpline.aspx

They are usually very helpful, the people on the helpline are experienced and allow you the time to talk about the things you are concerned about. Their 'advice' page, and 'local to you' pages are also useful.

In some areas there are Information Support Workers who are supported by PUK. Also, I wonder if you have a Parkinsons Nurse Specialist in your area.
They are absolutely invaluable at helping people through medication issues,
often far more forthcoming than doctors, and have the added advantage of seeing you in your home setting, which is where everything becomes visible!

Of course you may know some of this already....

There are quite a lot of really nice PD patient advocates in different parts of the country, usually working with patient support groups.

Joining one of these groups is also an option. The benefit of this is that you will meet people who have gone through the things you are experiencing, and you will be able to find someone on your wavelength, or your own age, something that if often really important for young onset people, again I think that PUK might be able to help with this.

But the first thing to try is to get that appointment moved forward.

Best wishes
Lindy

sure it is, the FDA requires follow up safety studies on all newly approved drugs, they can never be 100% certain about a drug's safety, it would cost too much. but at least i know there has been testing for carcinogenisis, reproduction, heart problems and other potential side affects.


let me ask you, are you going to investigate do it yourself amino acid balancing?

[QUOTE=moondaughter;693414]Lately I am noticing that there ARE gifts with this "bear" of a disease(thankyou to the person who described it that way) I too think it is helping me become more self-actualized. In my case I needed something really big to stop me from continuing to be the kind of person who never stopped the frenetic business of my life and the constant focus outside myself. there is a quote similiar that I've been looking at, to paraphrase, "we see the world not how it really is but how WE are" thanks for the nudge. FG

Hello . I am looking for effective treatment for what has been called dementia , for my mother , whose daughter , my sister is benefiting from Mom's disorder and has no interest in her improvement. Neuro assist gave me hope yet I dont know if I can present it as a solution in a court of law to remove an obstructive sibling from the issue. Your experience and research might help me , as I am too new to this. May God BlessYou and surrounding issues . Feel free to e- mail me. Peter

Peter...is mom taking sublingual B 12..??.it sometimes helps. Very good for PD also

Could you be taking too many supplements???? Try juicing fresh fruits & vegies...try making fermented papaya....don't go on meds without a last ditch effort

I take a dopamine Agonist, Mirapexin which is really helping with my symptoms, especially during the day which is important for me as I still work full time. Apart from a bit of nausea which is controlled by Domperidone I have so far noticed no weird side effects. I really don't think there is any point spending your life exhausted and in pain if it can be prevented. Hope you feel better soon. Caroline

My friend is still using liquid sinemet that we make...spread out in small doses during the day & mucuna cookies and fava products and fermented papaya that we make and is doing pretty well. She was diagnosed over 20 yrs ago and was in worse shape 2 yrs ago than she is now & now has no pain. (just lack of movement at times or tremor)

Trixiedee

If I had it to do over again I would follow the recomendations of Janice Walton-Hadlock doccumented in the Parkinson's Recovery Project. The books are available for free download. Good Luck!

From what I have heard her PRP is not even in existence any more and many people have followed it without success...

Thanks anyway

Trixiedee