About Introductions and personal stories

Hi there ~ I’m Claire and my dad is the Parkinson’s sufferer; bit of a tale of woe because he was diagnosed with Giant Cell Arteritis a week after my parents’ Golden Wedding anniversary last June and lost sight in his left eye. He started to get shaky and had a repetitive bouts of a bad hallucination where he was fighting his way out from a dark house in a wood! We knew nothing about Parkinson’s and thought his symptoms were part of the Arteritis; trying to get a diagnosis was difficult till we went private and saw a neurologist who confirmed it was Parkinson’s, which had been fast-forwarded by the Arteritis. He’s bedridden and needs full nursing care so is moving to a nursing home in next few days. Just horrible to see how vile this disease is!!!

My name is Chas and I have had Parkinson’s for 4 years, my older brother also has Parkinson’s as did my father. I have been told that it is does not run in the family, and I would be interested to know if there are any other family linked cases.
Regards. Chas

Hi, There clearly must be some family connection. I was diagnosed in 2011 and both my older brother and sister (now deceased) also suffered from PD. Others who contribute to this forum have reported in the past of more than one PD within the family. Gerrard

Thanks Gerrard, I have just been out to lunch with my brother and I showed him your response and he is going to join up to the forum . Chas

Hello, I was diagnosed with Parkinson’s 2.5 years ago at the age of 74. Whilst the medication I am taking (sinemet 25/100) appears to be controlling the typical symptom of tremors, for me the bigger issue that I am really suffering with is anxiety. Is anyone else in the same boat?

When I say anxiety (which has only come on since Parkinsons) I mean the following;
my jaw goes very tight and I find it difficult to talk and my head aches
my eyes are very dry
my stomach is churned up and I feel sick
I don’t want to do anything and I mean anything - I don’t want to see people or go out
I feel very very low

I have sought help from GP who has referred me to an anxiety counsellor and doctor who have said they can’t help me because its related to Parkinsons so where do I go from here? How can I feel better when I feel like I have been abandoned. Can anyone help or give advice on what to do please?

My GP is great and keen to help. She has recently prescribed sertraline which I have been taking for the past 5 weeks. It has however really upset my stomach (which can happen) but I don’t really feel any better.

Does anyone have any experience of either the medication above or anxiety arising from Parkinsons. I am seeing my GP next week and my Parkinson’s consultant next month so I really want to take control of my health plan. Can anyone help?

Hi @peddle, :wave:

A warm welcome to the Parkinson’s UK forum. :slightly_smiling_face:

First of all; I’m so sorry to hear that you’ve been experiencing anxiety, however, you my be relieved to know that you are not alone in feeling this as many people with Parkinson’s experience this too. It is often a natural reaction to situations we find threatening or difficult. There are a number of ways of managing anxiety including medication, therapies and lifestyle adjustment. We have more information on this via our website here - https://www.parkinsons.org.uk/information-and-support/anxiety.

There are also several threads on the forum where some of our members speak about their experiences with anxiety which I’ve listed below:

Lastly, our free and confidential helpline and Parkinson’s local advisers are here to answer any questions you have about anxiety. Feel free to call us on 0808 800 0303.

Best wishes,
Forum Community Manager

These are some of the symptoms I experienced after taking drugs:

I took one drug to solve a problem only to cause more problems and… so it went on. Be informed.

Oct/Nov 2001 Domperidone anti-emetic for vomiting with migraine

Feb 2002 Onset of blepharospasm (dystonia- muscle spasms around eyes)

15/5/02 Sertraline (GP) 13 days

18/5/02 face v. tight

19/5/02 all neck tight when walking, face so tense

27/5/02 Amitriptyline (GP) try for 2 days

30/5/02 clenching jaw, stiffness in neck

21/11/02 face pulling & pulling, jaw worse,

6/12/02 face tight, jaw, mouth opening

You can find much more detail about possible side effects of any drug you are taking by looking it up online. The section for ‘Professionals ‘ will again give more detail & technical terms.

Individual case reports give a detailed picture of what happened in an individual when they took a particular drug.

Your GP may not be aware that Sertraline can cause/worsen Parkinsonism as well as Akathisia which is often misdiagnosed as anxiety.

side effects of Sinemet include: nausea, vomiting, diarrhea,and headache, mental/mood changes (e.g., confusion, depression, hallucinations, thoughts of suicide), uncontrolled muscle movements in your face (chewing, lip smacking, frowning, tongue movement, blinking or eye movement); trismus, extrapyramidal disorder [dystonia, dyskinesia, akathisia & parkinsonism], increased tremor,

Nervous system side effects most frequently reported have included involuntary movements and mental status changes (in as many as 50% of treated patients on long-term therapy). The types of involuntary movements due to levodopa have been characterized as choreiform, dystonic and dyskinetic.

Choreiform movements due to levodopa therapy may occur in as many as 80% of patients treated for one year and frequently involve facial grimacing, exaggerated chewing, and twisting and protrusion of the tongue.

Other adverse nervous system effects due to levodopa include … Meige’s syndrome (blepharospasm-oromandibular dystonia) and ocular dyskinesia. In addition, the orofacial movements induced by levodopa have occasionally been reported to cause severe dental erosion.

Psychiatric side effects have included hallucinations (particularly visual hallucinations), psychosis, confusion, anxiety, mania, hypomania, depression, rapid mood cycling, nightmares, and hypersexuality.

Side effects include anxiety , Nausea, diarrhea, , headaches, bruxism [jaw-clenching] , Tremor, hyperkinesia, muscle spasm. muscle twitching, extrapyramidal reaction (including akathisia, dystonia),

ALERT: U.S. Boxed Warning Suicidality and antidepressant drugs: Antidepressants increased the risk of suicidal thoughts and behavior in pediatric and young adult patients in short-term studies.

The patient’s family or caregiver should be alerted to monitor patients for the emergence of suicidality and associated behaviors such as anxiety, agitation, panic attacks, insomnia, irritability, hostility, impulsivity, akathisia, hypomania, and mania;

Discontinuation syndrome: may include parkinsonism

Psychological symptoms may also emerge such as agitation, anxiety, akathisia, panic attacks, irritability, aggressiveness, worsening of mood, dysphoria, mood lability, hyperactivity, mania/hypomania, depersonalization, decreased concentration, slowed thinking, confusion, and memory or concentration difficulties.

Sertraline induced mandibular dystonia and bruxism N. A. Uvais, V. S. Sreeraj, and S. V. Sathish Kumar

J Family Med Prim Care. 2016 Oct-Dec; 5(4): 882–884.

Meanwhile, she started having “strange involuntary movements of the face” with “forced deviation of the jaw” to the lateral side which was extremely distressing in nature, lasting for few minutes… severe teeth clenching

Well, I swore I would never do this…but life is pretty crap at the moment and perhaps it is time to reach out…Diagnosed 2011 and life has been tough, I have gone from being a well respected head teacher, good job, good money, good relationship to currently living on benefits while trying to claim my pension, and getting my pension and benefits is causing me huge stress. There are days I am well and life looks ok but there are days I just want to curl up in a corner and die. People are kind but I. Im only 52 and it feels unfair. But I know there are people out there much worse than me… and I swore when I was diagnosed that I would define myself by the good I did…So if your in the Runcorn area and struggling reach out, I still drive and have a car…if I can help I would be honoured too.

1 Like

HI Shakeyguy good for you, i’m sure it wasn’t easy writing that. Finding and helping others and sharing experiences with them will I’m sure build a good foundation for remaining positive. Wishing you well with your new (ad)venture! Nick

I am my husband’s carer. He was diagnosed 4 years ago and has been in hospital for 6 months because of recurring aspirant chest infections since he lost his swallow and is PEG fed. His most difficult. symptom for me is that he has stopped talking. He can talk and very occasionally comes out with a word or two but normally doesn’t even respond with a “yes” or a"no". This makes it difficult for everyone. Including the nurses as we have to second guess what his response might be. Is this loss of communication common? Does anyone else have this problem.?

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.