Hello Ive just joined so trying to fine my way round the forum
Welcome you are in the right place.
I am one of the inmates, diagnosed following a positive datscan in June 2023.
Best wishes
Steve2
2 Likes
Steve2
“Inmates” - I like it
Han
1 Like
Morning Hannah … I’ve been a bad boy & I’m in here for life.
Steve2
2 Likes
Good that you have found the forum. Feel free to ask any questions about Parkinson’s. There is a lot of experience on the forum.
Doug
Do you mean we are all old ?
Steve2
I’m doing my very best to age disgracefully
2 Likes
Me too 
x
1 Like
Welcome @fp56
Does anyone else feel scared witless?
Yes, some days it hits me harder than others. We aren’t aware of how quickly our PD will progress, so I feel that the next 3-5 yrs ahead are going to be my best years left, so I’m trying to keep strong and enjoy those years. But I do feel that what lies ahead of us is very daunting.
1 Like
Good morning FP56 … Do tell us why you are scared, perhaps we can put your mind at rest. I’m 71 & was diagnosed with Atypical Parkinson’s [Parkinson’s plus] following a positive datscan in June 2023. This is the worst Parkinson’s to have I’m told. I’ve had symptoms for quite a few years so I’ve probably had Parkinson’s for a while.
In 2013 I was diagnosed with an aggressive form of Prostate Cancer. Now that was scary. I had my prostate removed & then had tests every 6 months to see if the cancer had spread or returned. I’m in remission for that. On the 20th May I am having tests for Bladder cancer which is also on the scary side.
You don’t die from Parkinson’s it just makes life more of a challenge. I’m not scared witless by having Parkinson’s, after all we just take a few pills to help us feel better. It is certainly frustrating having Parkinson’s but for me no more than that really.
Best wishes
Steve2
1 Like
Hello fp56, welcome to the forum.
We’re always here to support.
Sometimes. Most the time I’m living in the now and doing what I can.
1 Like
It helps to hear you say that as it’s exactly how I feel. It was suggested that I join the forum as it would be a support but I worry about hearing other’s negative experiences as I will immediately apply them to me
1 Like
Hi Steve2 wow you have had a lot to deal with I feel a right wimp now! Haha. I’ve had a lot of stuff over the years and my coping mechanism has been to control everything (not that you can obvs) and this has thrown me into a tailspin. My main worry is about losing my mind.
1 Like
I am trying to get my head round the meds. I take Sinemet 3 times a day - 8, 12 & 4 is the instruction. It’s tricky timing my meals to fit in with the required gaps between food and meds. On top of that I’m told to avoid protein until the end of the day so I’m struggling to know what to eat through the day. I’m trying to lose weight and was doing it successfully but eating carbs all day is not helping with that and on hectic days I’ve found it useful to use meal replacements but they are all protein based. Is so confusing and I have put back on all the weight I lost.
2 Likes
Good evening fp … I’m also on Sinemet 2 pills 3 times a day. I take my first 2 pills when I get out of bed at 7am or 8am. I take my second dose around 12 to 1 pm & my last dose at between 6pm & 7pm. I only eat once a day, usually around 4pm-5pm. I eat chicken mostly, ham as a treat & salmon now & again. I haven’t found that taking my meds at the times I do effects anything. I’m also on a lot of other pills for other issues & a few pills to counteract the side effects of the drugs I take.
Best wishes
Steve2
Hey
I take Co-careldopa 3 times per day
7.30-1.30-7.30
And it’s recommend that I don’t have protein at least an hr either side of meds.
Breakfast
Apple, 2 banana, pear, soft apricots
Lunch
Marmite on toast
Teatime
Meal of whatever
Don’t worry about what might happen in the future, not all that happens with others will apply to you. A great mantra I heard
You cannot change the direction of the wind, but you can adjust your sails
1 Like
I’m curious who told you tonavoid protein. Protein can affect the absorbtion and effectiveness of medication but that’s not for everyone