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,
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

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.

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,
Moderation Team

Hello everyone, I’m Jules.
My dad has recently entered stage 5 PD and it’s breaking my heart to see the changes in him. As a nurse I have looked after many people with this horrible disease so I know what each stage entails and thought I was well prepared… I’m not! I should have known that if I have cried over my patients I am going to cry more over my dad. My mum is his sole carer for all personal needs and she is 86 and a star but she struggles so much. We try to help as much as possible but with lockdown it’s been so hard. Dad has always been a very dignified person and he is embarrassed by the way he now speaks, needs help to eat and lately his incontinence but he never moans or complains. He has never had a parkinson’s nurse as there is not one attached to his consultant and I think this is a tragedy as I know from experience that these specialist nurses are worth their weight in gold, I called them whenever I needed advice on a patient. Instead I have had to try to guide dad and help with his questions and care. For someone who was a nurse with experience of this disease and sufficient knowledge to offer support I am in fact feeling completely useless and inadequate at helping my own dad.

Hi @jules12 and welcome to our friendly forum. This sounds very hard indeed and I do hope that other members will jump right in to support you during this difficult time. Although you say that you are a nurse with experience with Parkinson’s, this is of course going to be quite different.

You may find this section of our website helpful. It speaks about caring for someone with Parkinson’s. Since your dad doesn’t have a Parkinson’s nurse, you could benefit from a call to our helpline where there are Parkinson’s local advisers to answer any questions you may have. Call us on 0808 800 0303.

Remember that we are here for you, and I hope that connecting with other forum members will help make this time just a little easier.

Best wishes,
Forum Moderation Team

Thankyou Janice, I’ve passed on the number to my parents as well.

Hi everyone. I’m Matt, 43 and diagnosed at 40, did the usual bloke thing and ignored if for many years putting it down to stress with work. Currently on Sinemet Plus 3 times a day, generally ok but seem to be struggling with the mental health side of it all (getting help on that too) as my symptoms progress slightly year on year. Balance is getting a little worse which don’t help playing football or rock climbing for that matter.

First time here.

Hi @Matt77. Welcome to our forum. You’re in the right place for some friendly support and advice from other members. While a Parkinson’s diagnosis is never welcome, it’s good to hear that you are now getting care.

Mental health issues are common in Parkinson’s, with nearly half of all people experiencing anxiety or depression. You can read more about this here.

I hope you find the above information useful.

Best wishes,
Forum Moderation Team

Hi my name is Tricia and I am a carer for my husband Andrew who has been diagnosed with Parkinson’s disease dementia he has good and bad days I find it difficult to cope at times and feel so bad when he gets mood swings and I need some advice how to cope with him and not get stressed myself too much .

Hi @Tricia1, :wave:

A warm welcome to the forum. :slightly_smiling_face:

Parkinson’s affects everyone different and in many cases, a diagnosis can trigger various emotions in an individual which may explain his good and bad days. As a carer it’s important to know what support is available for you if you’re caring for someone with the condition. It is not uncommon for carers of people with any long-term condition to feel isolated or frustrated about their situation.

Knowing where you can get support or extra help from is important and joining the forum where many people share a similar experience to you, is a step in the right direction. However, in addition to the forum, there are other forms of help available to you such as:

We also have a wealth of information for carers via the Parkinson’s UK website which I’m sure you’ll find helpful and they can be found here and here.

We have a very caring and supportive community here so I’m sure you’ll hear from other members soon, however, I hope you find the information above useful and reassuring in the interim.

Best wishes,
Forum Community Manager

Hi I was diagnosed 2 years ago but not officially. I see my neurologist in August for a face to face consultation. For obvious reasons it was just a phone call in November. I feel my symptoms have worsened so I think we will make it official. I’m 67 and I retired at the beginning of COVID. I’m not sure what I’m doing here but would appreciate any help. Thankyou.

1 Like

Hi Sue,
Welcome to the Forum. In time you will hear from our lovely, supportive community. We would also encourage you to check out this section of our website for those who have been recently diagnosed. You will find a wealth of helpful resources and information there. We also have a free and confidential helpline at 0808 800 0303, staffed with caring advisers who can help with a range of needs, from medication questions to local resources. Please don’t hesitate to reach out to them for assistance.
Offering you a warm welcome and our best wishes,
Moderation Team

1 Like

Hi Sue,

I am in much the same boat as you. I was diagnosed in March but wasn’t sure if it was official because no one has told me face to face I have P. I just got a copy of the letter sent to my GP with the results of a DaTScan, nevertheless I informed the DVLA and am due to see a neurologist in August. My symptoms have got worse since the diagnosis.

I know it’s easy to say but my advice is stay positive and keep active.

Good Luck with the neurologist in August


Sorry to hear that you have both waited so long for a face to face with a neurologist. They should be ashamed of themselves.

I have never had any tests and was asked after 5 minutes with the consultant if I wanted to know what I had! Not sure what he thought I was doing there.

I imagine that you will be prescribed medication at you neurologist appointment. With this, exercise and a positive outlook, if your experience is like mine, you will enjoy good well managed health for at least ten years.

With a bit of hope there may be new treatments on the horizon.

Good luck on your PD roller coaster ride.

Goo Afternoon,
Long time reader, first time typer, I’ve not been diagnosed yet and I’m waiting on s DAT scan, I have been waiting for 7 months, but fingers crossed I will get it done before the end of the year. I regularly try to read info that can help me to understand and maybe have ownership over my condition. I’m 47 and work full time, sometimes i get annoyed with my tremor as is makes my right hand side just feel knackered!! I have only told select people but feel like sometimes it might help to talk to somebody who knows, if you know what i mean. Anyway, thanks for reading.

I’m hoping this might be a good sounding board and resource.

Hi @Toothfairy, I’m really glad you’ve decided to speak up. You’ve already seen that our members are very supportive and they’ll likely be along shortly to welcome you properly.

I hope you enjoy your time here. If you have any questions, don’t forget our Helpline at 0808 800 0303.

Best wishes,
Forum Moderation Team

Hi Janice. Hope you don’t have to wait in limbo much longer fo a diagnosis. I would contact your neurologist via his/her secretary and ask for an appointment, either fa face or video link. You should not be waiting so long to find the answer. But should be On a meds regime that will help you live your life again. The neurologist are there to help you. They are not keen to have face to face meetings due to Covid but can telephone or zoom you.
Good luck

1 Like