About Introductions and personal stories

Hi @CliveJoels, :wave:

A warm welcome to the forum. :slightly_smiling_face:

It’s great to have you as part of the community, please feel free to explore the different categories on the forum for topics and discussions that may resonate with you. For any information and support you may need, we have a confidential helpline with a team of great advisers that would be happy to speak with you. You can reach us on 0808 800 0303.

Best wishes,
Forum Community Manager

Hi, I’m a 63 year old male (married), diagnosed with PD about 4years ago. I’m a software engineer of apps controlling scientific instruments. I still work.

I’ve started exercising and have questions about “working out” with PD. At the moment my concern is pain in muscles of left arm (which is most affected by PD). It feels like the muscles of forearm and near outside of left elbow (possibly “Extensor carpl radialis longus m” or “Brachioraialis m”) are sore and possibly tearing. I’d like to get feedback from others with PD; people with similarly affected limbs and who do weight training.

I looked for a PD-focused forum with many active members. I hope you don’t mind that I’m in the USA.


Hi @Tremors, welcome to the community, it’s an active one, and we hope others will be able to give you some tips. If you haven’t seen them already, we have a range of videos about staying active on our YouTube: https://www.youtube.com/c/parkinsonsuk/videos best wishes, Lucy - moderation team.

Hi, I’m Charlotte, I’m one of the moderators here on the Parkinson’s UK forum. Let us know if there’s any help you need with anything.

Charlotte - moderation team

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I am a retired school teacher, married with one daughter, and two grandchildren. I live in a small village in the Vale of Glamorgan which is a lovely part of South Wales.

Forced to take retirement earlier than I would have liked, I have spent the greater part of my spare time writing poetry, which has become my main hobby and has been therapeutic. For any who share my interest in writing poetry, I have posted a poem which continues this self-Introduction, in Parkinson’s Poetry Corner.

My journey through life with Parkinson’s has been longer than that of most people. My consultant has told me that I am unique. in that I am probably the oldest, known person in the UK, and possibly in Europe to have had PD for as many years as I have, without suffering mental impairment.

I was diagnosed with PD in 1988, thirty-two years ago, although I had been showing signs of the condition four years earlier when it was mis-diagnosed as a frozen shoulder.
Over the years I have gone through various mediations available, and I have been fortunate to have had two excellent PD Specialists who have referred me for Neurosurgery, on two occasions; In 1996, I had a Pallidotomy to alleviate the excessive movement in my right side, followed, in 2005, by Deep Brain Stimulation(DBS) in which a pulse generator (a device like a heart pacemaker) is placed under the skin just under the clavicle. It is connected to one or two fine wires that are inserted into specific areas of your brain.

When the pulse generator is switched on, the electrodes deliver high frequency stimulation to the targeted area. This stimulation changes some of the electrical signals in the brain that cause the aymptoms of Parkinson’s.

In 2012, I was given the opportunity to try Duodopa, which is Ldopa, the common Parkinson’s drug in gel form. Duodopa is administered as a gel suspension through a tube that is surgically inserted into the intestine. A pump helps to deliver the required dosage through the tube. This method ensures that a continuous concentration of Duodopa is available in the blood.

I can honestly say that I feel better now than I felt twenty-five years ago and I would recommend DBS and Duofopa therapy to anyone who their consultant considers to be suitable…

Currently, my greatest PD associated problem is sialorrhea or excessive drooling. Saliva simply pours from my mouth in a continuous flow. I have tried all of the possible remedies including Botex injections, with no success.

Surgery to remove a salivary gland or re-route a salivary duct may be done in severe cases: but, because this procedure is irreversible, I am uncertain of having it, as it could result in a dry mouth, which can also be unpleasant.

If any of you have any experience of this surgical process or, indeed of any remedy, I would love to know.

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Hello, thanks for sharing your experiences of living with Parkinson’s. There’s a few threads on excess saliva that might have some ideas (although it sounds like you’re tried a lot of things!). This is one of them - Coughing & excess saliva

Hope it helps - and you can search for similar threads by typing ‘saliva’ into the search bar at the top of the forum.

You can also speak to our friendly helpline team who might be able to suggest some options or talk to you about surgery. You can give them a call on 0808 800 0303 - they’re open 9am-7pm Monday-Friday and 10am-2pm on Saturdays.

Charlotte - moderation team

My father in law has Parkinson and he has been in sheltered accommodation for the last 3 years but over the last year he has been deteriorating and we feel that a residential care is the most appropriate as in the last month to six weeks he is having a fall on a more regular bases, his hallucinations are so much worse, he is cutting up duvets, hiding food and objects in random places like we found a cucumber in his trouser draw.
As I write this he is currently in our local hospital as they think it’s his medication that’s causing the issues but we as a family don’t believe it is his medication. He already has a package of care of 2 carers four times a day as well as all the equipment he needs and still not working. So I turned to you really to try and help

Hi @sjbaily84, :wave:

Welcome to the forum. :slightly_smiling_face:

I’m really sorry to hear about your father in law, sadly many of our members have shared similar experiences to you and making the decision to put a loved one in residential care can be a tough decision to make. We understand that as Parkinson’s symptoms progress and the needs increase, a move to a care home may be a necessary consideration which is why have a wealth of on our website to help guide you through this process. Please visit our website here: https://www.parkinsons.org.uk/information-and-support/home-care-and-care-homes

Also; in regards to the hallucinations that he has been experiencing, some people with Parkinson’s may experience hallucinations or delusions. They usually happen as a side effect of your Parkinson’s medication. But in some cases they may be a symptom of your Parkinson’s, or another condition, such as dementia. Again, we have a lot of information and support on this via our website do take the time to check it out here: https://www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect

Lastly, we have a confidential helpline with a team of advisers that would be happy to provide you with more support on this. Give us a call on 0808 800 0303 or email us at [email protected]

Best wishes,
Forum Community Manager

Hi Ezinda My name is Tom also known as crannogtom I am new to the forum but diagnosed feb 2017 with Parkinson’s after a “dat scan”. I am very happy with keep fit but found recently to be getting less fit as the days go on. Some people would say it is because of coronavirus but I think it happened before this. I am 70 retired ex NHS finance worker, I was a fit 68 year old. I am now an unfit 70 year old. but still doing keep fit almost every day.


Hi @crannogtom, :wave:

Welcome to the forum.

Ezinda left the charity a few years ago, but fear not I’m here to help. :blush:

It’s understandable if you haven’t felt motivated to exercise recently, we know that exercise can be quite challenging for people with Parkinson’s and the current pandemic isn’t helpful either. However, despite the challenges, exercise is good for you and it’s especially good for you if you have Parkinson’s. We understand that there is no one - size - fit all type of approach, with Parkinson’s, the best exercise to do depends on the way it affects you.

Fortunately, we have a lot of helpful information on the Parkinson’s UK website on staying active that I think will be really useful to you. You can find this info along with other videos, tips and advice here: https://www.parkinsons.org.uk/information-and-support/exercise

We also have a confidential helpline with a team of great advisers who’d be happy to provide you with more support on this. Do give us a call on our free contact number 0808 800 0303 or email us at [email protected].

Best wishes,
Forum Community Manager :slightly_smiling_face:

Have you considered the possibility that your father in law’s strange behaviour may be due to Dementia? It is quite a common occurrence in people with PD. Perhaps its something to ask his consultant.

Hello, I’m Heather and I was diagnosed in October last year - 2019. I’m married and my husband is a great support and I’m also a retired theatre nurse. I was told at diagnosis that I would not see a Parkinson’s nurse before I had my 2nd consultation in April. I’ve been informed by letter that I’m on their waiting list but I’ve been struggling, especially in lockdown. I’ve been suffering badly with anxiety and depression; also sleep is a bad deal for me. I finally phoned the Helpline on this site and had great support and advice so I’m now on my GP’s radar although it’s still phone consultations.
I feel that, although I had come to realise what my diagnosis was so it wasn’t a shock, I’ve not really come to terms with it. So lockdown anxiety plus grief for my loss of health have collided.
There are some good resources and I discovered that data recorded by Google can be helpful. It had obviously noticed I’ve used this site and when I next went to YouTube I found a host of useful Parkinson’s videos. Some of the information I got from a medical seminar elicited a response of “why didn’t anyone tell me that?”. Also I discovered that I’d been taking my medication wrongly so have been able to adjust when I take it - I did check with med instructions too! Also some good hand exercises as my hands are weak and clumsy.
I look forward to learning more and both giving and receiving support in the community.

Hi @Heatherbee, :wave:

A warm welcome to the forum. :slightly_smiling_face:

I’m sure many others can relate to your journey with Parkinson’s so far and I can assure you are not alone, we are here to provide you with the help and support that you need. I’m really pleased to hear that you have found our helpline service useful and found our website helpful as well. If you haven’t done so already, I would encourage you to take a look at the ‘newly diagnosed’ section on our website for information on all the support available to you at this stage with your condition. You can find this here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

It’s great to see that you have already taken a proactive approach to research helpful resources and if there’s any questions that you may have going forward about your medication, we’re always here to help you and our community do a great job at sharing helpful tips and advance.

I look forward to seeing you around on the forum.

Best wishes,
Forum Community Manager

Hello - my husband has had PD for over 12 years so guess he is in the ‘advanced’ category. He’s uncomplaining and heroic but life is definitely getting significantly harder for him and me too! He needs quite a bit of help throughout the day and now at night as well. We have resisted getting involved with groups before but I think now, and I have persuaded him, it might be useful!

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Welcome to the Forums, Bert! This is a wonderfully welcoming community with lots of valuable life experience to share. Please feel free to browse our website at Parkinsons.UK where you’ll find a handy search bar at the top right with a wealth of information on Parkinson’s, including resources for family members. You can also call us at 0808 800 0303. We send our best wishes to you and your husband, and we hope you’ll enjoy our lovely Forum community as much as we do.

All the best,
Moderation Team

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.