Hello I'm Cedarwood and recently diagnosed

That is officially diagnosed, though I suspected it for a couple of years. In the beginning, I just had tiny tremors in my fingers, which I could stop. I didn’t connect that to the fact my legs had slowed, and I struggled to get up from many chairs. That I put down to age as I was over 70. But things drove me to my gp in January, voicing my concern. She was pretty sure my condition was not neurological. Lockdown came and my husband and I did our daily walk of about 2 to 3 miles, but more and more slowly, and taking shorter routes.

This drove me to the gp again (a different doctor), by phone. I was putting symptoms together and could see where they were leading. I suggested PD, and he suggested he SEE me. Did some physical checks and said he would refer me. Since then (June) I’ve had my neurologist’s appointment, and last Friday started Madopar. In that 2.5 months I have gone seriously downhill, but the Madopar seems to have started working a little, and I have to double the dose from the second week, so I am hoping to get my life back.

I have been interested in how other people take their drugs - before meals, with or after; what is written on th bottle and what the leaflet inside says. Little consistency.

I think I need to see a PD nurse but gather they are in short supply where I am.

In the meantime, thank you for reading.

Hello and welcome to the forum. You will find there are many anomalies in Parkinson’s and its impact is very individual. I was diagnosed almost 11 years ago and in that time the way I take my meds has changed. At the beginning I played it by the book increasing by a small amount over a few weeks until I reached my optimum level at that time. Since then there have been changes to my meds over time and although i take them as prescribed ie 4 x pd I have become :much more confident in how they are taken for eg I have recently altered the timings of some of my meds as they didn’t seem to be as effective as they had been. I told the Parkinson’s nurse and will discuss it with my consultant at my revi ew next week. At the moment I am taking them before meals but this hasn’t always been so. It is , like many things in Parkinson’s both variable and changeable. Afraid this doesn’t give you much in the way of practicalities but I do hope you will soon feel comfortable with your medication routine, it takes a bit of getting used to.

Hi @Cedarwood, welcome to the forum.

You may find it helpful to ring our helpline, which has some trained Parkinson’s nurses, for general advice on taking your medication. You can ring the helpline on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

I hope you find helpful support from others on the forum too.

All the best,
Forum moderation team

Thank you for replying. I think one of my issues is that I don’t know anyone who has pd, which is why I joined this forum. It is scary.

Thank you, I probably will.

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Hello again, nothing wrong with being scared, the early day are not easy. May I suggest you have a look at some of the other posts in this section. Not only will you find your reaction echoes that of many new to the forum but that a lot of the responses give the same advice ie give yourself time to get used to the diagnosis, resist the temptation if you can to read everything in sight and run the risk of information overload and not being able to see the wood for the trees instead concentrate on your immediate concerns, write questions down - they tend to desert you when you see your consultant or whoever and so on. Take heart, we’ve all been there and one way or another we live to tell the tale. Having Parkinson’s i won’t deny can be difficult and challenging it is also not the end of the world unless you choose to see it that way. Deep breath, one step at a time and be kind to yourself. Let us know how you are getting on and come back any time you need. Take care

Hi cedar wood,
I am 59yrs and was diagnosed 8 months ago and have been on Madopar 125mg 3 times daily since. It seems to be working although I don’t know what I would be like if I didn’t take it. I take the capsule at mealtimes and don’t appear to have had any of the typical side effects.somedays it seems like the drug doesn’t help but then that’s probably normal and on two separate weeks I have felt little or no improvement from the Madopar, my neurologist says this just reflects weeks when I would have been down even if I didn’t have pd. everyone is different and I am learning everyday in how many different ways pd effects me, leading me to think I had the onset of the disease long before I was diagnosed.

HI Hemyock and Cedarwood

I was told to take meds which contain levedopa (Madopar and Sinemet) at least half an hour before meals as the protein in the food doesn’t make it work so good.