About Introductions and personal stories

Hi, I’ve been diagnosed with parkinsonian disease but I don’t know which kind yet. I’ve just had an MRI and waiting on results. My main symptom is freezing. My balance is terrible and I keep falling. I’m on sinemet tablets but they don’t do anything for me. Has anyone tried mancuna or atremoplus? My consultant doesn’t want me to stop sinemet but hasn’t suggested anything else.

Hi @Peskyprawn56,

Welcome to the forum.

I’m really sorry to hear about your recent diagnosis. I can assure you that you’ve come to the right place for help and support. As you are newly diagnosed, you might find some valuable information on the relevant page of our website. We also have some information on managing falls and dizziness.

We also have a free and confidential helpline with a team of great advisers who would be happy to provide you with more information and support and can answer any questions that you may have. Give us a call on 0808 800 0303 or email us at [email protected].

Best wishes,
Nikos
Forum Moderation Team

Hi sorry to read your post and your recent diagnosis.
I started on Mucuna Pruriens 2 years ago. 40% standardised white powder which I purchase from America. I was diagnosed six years ago. Took pharmaceutical meds for four years before switching to
Mucuna. I currently take 4 doses of 2g daily.

There are other members that use Mucuna Pruriens so hopefully they will respond to your message

Take care
Minky

Hi I’m Anna
I am in my late 40s and I have had Parkinson’s for more than 10 years. I was doing great but struggling lately with additional health issues including thyroid disorder, and medication (sinemet) not working for me. I have good medical support from a PD team but am keen to chat to anyone here with advice/experience similar. Hopefully I have something to offer too in other ways regarding managing Parkinson’s.
Thanks
Anna

Hi, I was diagnosed with PD a couple of weeks before the first lockdown ! I am 68 and retired. I have had a couple of calls with the consultant and now have a contact for PD Nurse . The Covid situation has not helped with the limited access to friends and relations and I probably have had too much time to think about the"bad" things. In fact I have not told most of my family yet as I have not seen them. My husband is an angel as I have epilepsy and arthritis and he is so positive. I fo find that it takes far longer now to do the ordinary things . How on earth did I manage to get up, shower, and be out of the house in 20mins when I worked. ! Lucky if I make it under 45 now. My muscles need building up and I hope that i can see a physio as soon as we are able to do so. I use my exercise bike most days for cardio and luckily can still help out as a volunteer despite the restrictions. Well that’s enough about me. I am sure this forum will help me to answer questions as they come to me.

Hi Socks,
We just wanted to welcome you to the forum, and make sure you’re aware of the resources available at Parkinsons.org.uk and our helpline at 0808 800 0303, before our lovely community says hello. It sounds to us like you have a great outlook and plan. We think you’ll enjoy it here. Be sure to check out the poetry and music topics for a great way to share and get to know each other outside of talking symptoms, medication, etc. All that valuable shared experience is here, but so is a diverse community of wonderful PWP, carers, and family who, like you, are are so much more than just the condition.
All our best,
Jason
Moderation Team