New to forum

Hello I am new to posting on the forum. I have been searching it for answers to my current situation. I was diagnosed in 2012 but due to a greater upstanding realise I’d had it for at least 2 years prior to this. I started on Madopar after epicapone gave me more problems than it solved, this worked for several years with the dosage increasing to 1325 mg a day taken every 3 hours with 3 Madopar CR at night. I had to change consultants as my first one was no longer practicing. My new consultant said the maximum Madopar should be Is 1000mg a day. So I migrated to a mixture of Madopar, sinemet and opicapone. I lost a lot of weight over the six weeks of opicapone. Which didn’t help with off time, then went onto 50mg Safinamide with 900mg Madopar and sinemet.This gave me a lot of Dyskinesia so after 5 weeks 100 mg of Amantadine was added to the mix. Which solved a lot of the dyskinesia. As the drugs wear off I am now suffering with fast breathing, bloated stomach and a foot twitch which starts as drugs wear off. As well as a worsening of problems going to the toilet. It. Is very slow, muscles don’t appear to release at the appropriate time. Has anyone else had problems? or am I getting a type of panic attack? Is this due to drugs or mind?

Hi Nightowl,
Hello and a warm welcome to our amazing forum community. You’ll soon hear feedback from our members, as managing side effects from Parkinson’s medication is a recurring subject here. We’d encourage you to have a look at this page of our website, and use it as a starting point to explore the myriad avenues to data the site contains. The search bar is handy and comprehensive and will lead you to research, blogs, and archived forum discussions on an invaluable range of subjects. We would also encourage you to contact our helpline at 0808 800 0303, especially regarding changes in your medication, and any communication issues with your medical team – though our advisers are capable of far more than that and welcome any questions you can think up. They are massively helpful, and can help you locate local resources as well.
We hope you’ll make use of these tools as you get to know this warm and wise forum community, and accept our best wishes.
Mod Team

Thank you Jason I am in contact with your helpline and local Parkinson’s nurse. I live by myself and due to COVID and health issues have only been out for medical appointments in the last 18 months. I have now decided to have a local company help with housework, shopping, getting to appointments and company as my family don’t live near enough to visit. I am retired

I had a recent diagnosis of PD (6 months ago via a hospital neurologist) though it came as no surprise really since I had been having problems with shuffling, festination and freezing for some time and was no longer able to walk around the local park without hanging on to my husband’s arm.

I also started to have issues with cognitive ability and exhaustion which really affected my demanding job that I am no longer doing.

I take Co-Careldopa 3 times a day at maximum dose which helped my symptoms at first but after 6 weeks the benefits seemed to wear off though the neurologist has advised me to continue with it.

I am now under the care of the community rehabilitation team for physiotherapy and occupational therapy though I had to repeatedly ask for that to happen.

I’m not currently working, which gives me time to focus on other thing that I enjoy, such as being outdoors when possible, organising my photography, listening to music, reading - and 2 sets of physiotherapy per day, oh and did I mention the several naps that I need per day!

This has all been an emotional rollercoaster but I try to take each day as it comes and to appreciate the support I am getting from the NHS, my husband, friends and Parkinsons UK.

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Hi David!
Since this is your first post we wanted to welcome you to our lovely community. We appreciate you telling us a bit about yourself, and we are so pleased to hear you are getting such wonderful support from what sounds like an amazing group of family and friends. We want to make sure you are aware of the resources we provide, from the immense wealth of data on to our free and confidential helpline at 0808 800 0303. Our advisers are friendly and highly trained and are eager to assist, including helping you find events and resources in your area. We also hope you’ll have a look around the forum, especially as you appreciate art and humor, because there is a treasure trove of creative brilliance among our warm, wise, and supportive community.
Best wishes, and again, welcome!
Mod Team

Hi Jason,

Many thanks for your message of support. I’m looking forward to be part of the Parkinsons forum.

All the best,