My Parkinson's life is so confusing - this is not easy.

@spatase I had positive experiences with Inbrijia until I got oral and esophageal thrush. My mouth and throat became sore and inflamed. It worked like a charm on my break through symptoms. I was mad that the thrush prevented me from continuing with it.

@spatase I appreciate you sharing about your husband's use of Inbrija. I hope that it will continue to be effective for his "off times." How often does he take the Sinemet?

@hopeful33250 My husband takes sinemet at 7A, 11A, 3P and 7P. He has taken three does of Inbrija and says he has seen minimal to no improvement in his major 'off' symptom of extreme hot/cold body temps which really shut him down. Anyone else have this extreme temperature dysfunction? Face and groin sweating profusely and hands and feet and torso so cold he feels he's freezing. Hands feel as if they've been in ice water and forehead is red and sweating hot

@esther589 I am sorry to hear this! What are your most difficult symptoms that cause the confusion?

I always used to be very organized. I ran my own business with two locations. Now I get confused about what day it is and I often turn up for appointments on the wrong day or at the wrong time. I have all my commitments on Google calendars but I still get confused. This is a big frustration.
I have to make sure that I take someone with me into doctor appointments because I don't always understand what they are telling me.
Sometimes I wake up in the morning and I'm not sure where I am. We have moved a few times in the last ten years but I'm not even sure which Country I'm in. We have lived in the UK, the US and Spain during the last forty years.

Does anyone else have sever cramping in the bowels mainly in the before noon time? If talking about bowel pain or problems is not considered proper talk let me know. I am not on any medications at this time and think my next doctors appointment is about six months away. Basically just on some exercise things two or three times a day.

@kshansen - no problem at all talking about bowels. This is all part of how other members here can support you. Tagging @kshansen @jtes @jflamini @southwest may have some ideas for you about Parkinson's and how to manage severe bowel cramping.

@lisalucier
Thanks for the quick reply! I would welcome anyone who can offer some help or support of any kind.

I'm thinking it would be difficult for someone not having these problems to understand how difficult it can be to deal with it. I also know I seem to have major problems at times putting things in words. Not sure if that is because of the Parkinson's or just my problem explaining things I may not know the proper/correct terms to use for it.

@esther589

Cognitive issues, as you described, that result in memory or focus issues are very frustrating. I am glad to see that you take someone with you to appointments; that is wise! How long have you been experiencing these issues? Have you considered being evaluated by a neuropsychologist? Such an evaluation might provide information about medications or other therapies that could help you.

The reality is the Sinamet is not a perfect solution. It takes time to absorb in your body and then may wear off before the next dose is due. Try to monitor your doses to determine when its most effective and plan you activities accordingly. In my case I try to take my first dose on an empty stomach because it is sometimes slightly more effective for me. But if that upsets your stomach, take it with a meal. My meds take about 60 minutes to be most effective so if I have a social event I time that dose accordingly. It's not a perfect science but work with it to get the best outcome for you. My wife also has Parkinson's and I live by her quote, Don't wait for the storm to pass, learn to dance in the rain.
Best wishes, Joe