On and Off periods.??

[Benidorm66]

I was diagnosed over 4 years ago with P D, I see the neurologist less than every 6 months, sometimes having to telephone for next appointment because I haven’t received one. I have never seen a Parkinson’s nurse, originally as she was on Maternity Leave , I finally got one for this October then in Sept it was cancelled and am still waiting for another.I have no one other these communities to discuss things with so I hope someone can tell me what these on and off periods are that everybody mentions?? I don’t feel any different when I have taken my tablets or not ,I take Madopa and 1mg Rasagiline.

[Enidah]

I've had PD for about 7 years and diagnosed for over four and a half and started experiencing off time probably a year-and-a-half ago or so. The phrase that always comes to mind for me is, weak as a kitten. It's like the motor just runs down and quits and doing anything is harder and the pain in my back starts up and my shoulder and I think also I become depressed. Boy,that doesn't sound like much fun! I find that fascinating that you don't notice any difference between taking meds and not taking them, if I understand you correctly. I am on sinemet and amantadine at this point. Still working well for me, most of the time. I hope you are able to get an appointment and get to the bottom of this and verify that the problem is PD. How are you doing with symptoms?

[Benidorm66 in reply to Enidah]

Thankyou for your reply, my balance is very bad, I use a wheelchair outside, I have tremor on my right side, very bad nausea ( everyday for the last 6 months!!!) depression recently because of the constant nausea, I too have back neck and shoulder pain and freezing when getting up. Incontinence problems too. In fact not much going for me!!!

[Enidah in reply to Benidorm66]

From what I have read dopamine Agonist are the preferred meds for young-onset PD. I don't know your age but I wonder if you have tried sinemet and if it would be more helpful for you. Although, people get nausea with that quite often. I start the day with half a sinemet, 25/100 broken in half and then about an hour later or so take the other half. The nausea is very hard to put up with and I have been fortunate to rarely experience that. You have all my sympathy!

[M_rosew]

Look up 'NHS Choices' and find Parkinsons on the ABC of ailments. This sets out PD symptoms, diagnosis and treatment.

Six monthly Neurologist appointments are about right. Be prepared to report precisely about your current condition and ask any questions. You should also have access to Neuro Physiotherapy and possibly OT. (This is easiest if you live in the same health authority area as the consultant).

The NHS site also lists your local support networks.

Contact (and join) Parkinson's UK. They have a telephone helpline.

Might be worth looking at websites of hospitals near you to see what Neurology services they offer.

[Coot18]

How effective are medications, natural or pharmaceutical?

Maybe they are placeboes.

nationalgeographic.com/maga...

Since PD is a brain disorder, maybe my attitude has something to do with it

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