About Introductions and personal stories

Hi @Chars, :wave:

A warm welcome to the forum. :slightly_smiling_face:

Unfortunately, speech and communication problems are common for people with Parkinson’s so it certainly isn’t out of the ordinary for your husband. I’m sure you’ll hear from some of our members shortly with their own experience with communication problem, however, we have information via our website on speech and communications problems.

On the page you’ll find practical tips to help with speech, info on speech language therapy as well as some useful contacts for your husband. You can find this information here - https://www.parkinsons.org.uk/information-and-support/speech-and-communication-problems-parkinsons.

I’d also recommend that you speak to your husbands GP or Parkinson’s nurse for medical advice on this and you can speak to one of our advisers via our confidential and free helpline service. Do give us a call on 0808 800 0303 or email us at [email protected].

I hope you find this information helpful.

Best wishes,

Is this the right way to do my introduction, by clicking Reply? Hope so.
I want to ask advice about getting a referral to a movement disorder specialist.
When diagnosed 3 years ago, I didn’t get a referral to anyone (apart from Parkinson’s nurse). I went to the GP and asked to be referred to Kings hospital for a second opinion. Saw neurologist there twice: the second time he prescribed Sinemet. I had a bad time with it. In hindsight I realise that’s because he instructed me to increase it too quickly. He didn’t even tell me what times I should take it.
I phoned my Parkinson’s nurse, who gave me advice about stopping sinemet, and got me a referral quite quickly to a neurologist who wasn’t a specialist but apparently had experience with PD.
Things got very difficult 4 months ago. Thankfully they have improved. But I still don’t have a movement disorder specialist. I have asked my Parkinson’s nurse for a referral twice. She said she would get the neurologist to do the referral. Is this how it’s done?
I asked a GP at my surgery, who didn’t think it was her remit to do the referral.
I think I’ve probably put this in the wrong place. I should repost it as a new thread.
Will try to do that.

Hi @cmw95,

Yes, you’ve come to the right place for your introductory post. I’m sorry that you had such a bad experience with Sinemet; it does sound like you could of been given more information. Given that you’ve already spoken to your Parkinson’s nurse and have already seen a neurologist, I’d recommend you give our helpline a call and speak to one of advisers about this for more support. Give us a call on 0808 800 0303.

Best wishes,

Thanks, will ring them.

Hi I have had Parkinson’s for20years. And have now developed a painfull and dde TVp

Hi @kathryn,

Welcome back to the forum.

I’m really sorry to hear that you’ve been experiencing pain, I can only imagine how tough this must be fore you. We have a lot of information and support on pain on our website which you can access here - https://www.parkinsons.org.uk/information-and-support/pain.

I’m a little confused by the rest of you comment, can you let me know what you mean by “painful and dde TVp”. Can you let me know what you mean by this? I really want to help you in any way I can so please let me know.

Best wishes,

Continuing the discussion from About Introductions and personal stories:

My husband has Parkinson’s dementia with Lewy body.
Just recently he took a very sharp downward turn in his condition. Iv been told he is in stage 5. How many stages are there to PDLB.
I get very vague answers to this question. I’m so tired that I forget to ask some things.
If anyone answers, I would appreciate if you were straight with me. I’m need to know.

Hi @Molly3,

I’m so sorry to hear about your husband, it makes sense as to why you have this question. I have consulted with my colleague in our helpline team to explain the different stages of Parkinson’s as best as I can. Please see below:

Stage 1: diagnosis, this is when people are newly diagnosed, they may be having investigations to confirm the diagnosis, they may be started on Parkinson’s drugs or they may not need medication at this stage.

Stage 2: Maintenance, this is when they are taking medications and the medications are managing their symptoms well without causing side effects.

Stage 3: Complex, this is when the medications are not working as well as they used to, therefore they are experiencing symptoms which are difficult to manage or the drugs may be causing side effects. At this stage it can be a balance as to treating the symptoms without making things worse.

Stage 4: End of life, this is when we are struggling to improve the symptoms and our main aim is to maintain the comfort of the person with Parkinson’s and support family and friends.

If there is a rapid decline we normally rule out infection, dehydration and constipation as all of these can make symptoms worse.

I hope you are able to get support locally?

If you have questions, if you write them down when you think of them and then go through them when you see a doctor or nurse next.

If you would like to speak to one of the nurses on the helpline please do not hesitate to ring the helpline on 0800 800 0303 and ask to speak to a nurse.

Best wishes,

Hi Chas,
I have had Parkinson’s for about 13 years now and my Mum had PD she was diagnosed in her early 60’s she died in 2005 and that is roughly the time I started noticing left hand tremor I was in my very early 50;s when I was diagnosed.
This is a great form with great people of course it is we all have PD.
Best wishes to everyone.

Hello . I’m new to this forum, and have never joined anything like this before, so bear with me.
I was diagnosed with Parkinsons some 30years ago (I’m now 65). It’s been slow to ‘progress’ and I was very lucky to have been able to have DBS some 7years ago. So i’m not doing too badly, so why join now? Well, I have trouble with communication, with picking up on signals to be exact. If someone drops a hint I don’t pick up on it, I miss all the signals - body language etc. Does anyone else have this kind of problem please? Apart from telling (in this case my boyfriend) to be blunt ! I’m not sure how to get round this problem! Thanks in advance.

Hi @Carolekins :wave:

A warm welcome to the forum. :slightly_smiling_face:

I’m sure you’ll hear from some members from the community shortly with their own experiences; the great thing about the forum is that you’re never alone with no matter what stage you are on your Parkinson’s journey.

Communication issues are not uncommon for people with Parkinson’s which is why we have a lot of information and tip via our website here: https://www.parkinsons.org.uk/information-and-support/speech-and-communication-problems-parkinsons. We have practical tips, useful apps and suggestions on the best form of therapy which I’m sure you’ll find helpful.

If you’d prefer to speak to someone about this, we have a team of friendly advisers via our confidential helpline on 0808 800 0303 or email us at [email protected].

I hope this info helps!

Best wishes,
Forum Community Manager

Hi, I’m 53 and had PD for 10 years. I had DBS in November '19. I work full time and am married with two children at university. Notwithstanding my diagnosis I remained positive, physically active, and lived life to the full, supporting PUK as much as I could. I responded very well to my medication (running 2 of my 24 marathons in the last 3 years), but the “offs” were too extreme so I had DBS try to smooth out the on and offs and as an investment for the future. This has been largely successful almost cutting my medication in half, and levelling out my whole day. The spanner in the works is a breathing issue I have developed caused by the larynx closing and restricting airflow and causing a stridor (a sort to wheezing when I breath in). I am told this is rare but that a botox injection in the larynx may resolve it. I would be interested to hear if anyone has had a similar experience. Thanks and looking forward to sharing experiences on this for

Hello my name is Clive Joels. I live in Leeds and I am 76 years of age. I am pleased to see so many people contributing to the forum. I need to be clearer about email and other websites as they tend to mesh together.
My wife has tried to help me with these problems but she is no expert (a) and gets upset when I mess up too many times.
I was a college vice principal until I was 60. I worked as an independent real estate professional for 15 years and have just sold my last property.
My hobbies include singing and reading - crime fiction especially. I have three grown daughters and two granddaughters.

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.

1 Like

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