Q&A: Non-motor symptoms in Parkinson's
Consultant neurologist Professor K Ray
Chaudhuri joined our discussion forum in May
2012 for a question and answer (Q&A) session on all aspects of
non-motor symptoms in Parkinson's.
Here's the transcript of the session.
We've split the questions and answers into broad categories, to
make the transcript easier to read and to signpost to other sources
of information and support.
Hello and welcome to the Q&A session.
My name is Professor K Ray Chaudhuri and I look forward to
answering your questions on all aspects of non-motor symptoms in
I am a consultant neurologist and Professor in Neurology and
Movement Disorders at King's College Hospital, University Hospital
Lewisham and the Institute of Psychiatry.
I have had a long-standing interest in the non-motor symptoms of
Parkinson's which can have a substantial impact on the daily lives
of people with Parkinson's and their carers.
Because of this, I have established a number of tools that help
people to identify these symptoms and to discuss them with their
healthcare professionals. These include the Non-motor symptoms questionnaire and the
Parkinson's disease sleep scale (PDSS).
I hope that I can use my knowledge and experience to answer your
questions on this topic.
Sleep and night-time problems
Emma: My father has Parkinson's and he has been having a
great deal of difficulty sleeping. Whenever he lies down and closes
his eyes it feels like the room is spinning. He rarely gets more
than an hour's sleep at a time. This obviously has made him feel
unwell and very moody.
Is this something other Parkinson's suffers get or
Dr Chaudhuri: Yes, this may be related to your father's
A range of sleep and other night-time
problems can occur in Parkinson's. Up to 90% of people with
Parkinson's will experience some form of sleep problem, which range
from difficulty falling asleep (insomnia) to nightmares, talking
during sleep, wandering at night, passing urine or difficulty in
turning in bed.
In your father's case, the nurse or doctor should first
Parkinson's disease sleep scale (PDF file on external site)
which is widely available to clinicians and easy to use. This would
identify whether the problem is due to difficulties falling asleep
or maintaining sleep.
Depending on this, your doctor will decide whether a short
acting sleep-promoting drug or a long acting anti-Parkinson's drug
given at evening time would be most appropriate.
mike700: I have no problem falling asleep, but I wake quite
a lot during the night and tend to rise early. Is this likely to be
from the disease or the medication?
Dr Chaudhuri: This suggests maintenance insomnia - or
trouble maintaining sleep - which can be caused by a number of
factors and can be identified using the Parkinson's disease sleep
For instance, you might not be sleeping because you're having
difficulty in turning in bed, stiffness, cramps, restless legs,
getting up at night to pass urine, pain or early morning
Depending on what the PDSS shows, appropriate treatment can then
Once again in many cases using a long acting dopaminergic drug
taken at night is particularly useful (for instance, a low dose
rotigotine patch combined with a small dose of zopiclone).
SF: I find that I wake up in exactly the same position as I
fell asleep. (I usually sleep sitting up). Is this a worrying
Dr Chaudhuri: This is difficult to explain and could suggest
that you have night-time akinesia or slowness of movement.
If this causes you discomfort you may want to talk to
your doctor about whether a long acting levodopa or a dopamine
agonist at night might be appropriate.
More about sleep and night-time problems
Balance and dizziness
dingle32: When collecting luggage at an airport carousel
I have great difficulty because if I look at the belt I become
I take occasional glances to see if my case is coming
but when I try to collect it the case goes in the wrong direction.
I become completely disoriented. This is very difficult because I
usually travel alone.
Another problem I have is that if someone makes a quick
movement near me it results in a very violent twitch. I also get
this if there is a quick movement towards me on a TV programme.
This makes mixing with people more difficult.
Is this a result of Parkinson's and if so can anything
be done to help?
Dr Chaudhuri: This is likely to be a problem with the vestibular
system or the inner ear, which contributes to balance and
There may be no connection between the problems that you're
having and your Parkinson's but a recent study in Italy has
suggested that vestibular problems may be indeed be linked to the
You should consider asking for a referral to an ear, nose and
throat (ENT) specialist who can perform an examination to find the
shadow: I get numbness in the fingers, chest and throat area,
discomfort, red face and dizziness simultaneously. This occurs
when I bend forward or stand too long.
Is it Parkinson's or something else? Or is it
sitting/standing blood pressure? It doesn’t seem to happen when I
rise, but as the day progresses.
Dr Chaudhuri: The numbness could be due to a trapped nerve in
the neck and upper part of the spinal cord.
This may have little to do with Parkinson's apart from
aggravation due to the stiffness you may have as a part of your
condition. Your medical history is important and you may need scans
of your spine.
Dizziness in Parkinson's, however, has many causes. This could
be due to a side effect of the drugs you are taking, or to a
problem with the autonomic nerves causing your blood pressure to
drop when upright.
You should ask you specialist to do an assessment using the
Non-motor symptom assessment scale for
Parkinson's (PDF on external site).
More about balance and dizziness
Mental health (memory problems, apathy, depression, anxiety,
dementia and cognition)
Zalamanda: I recently came across a video article [on
the Guardian website:
Dopamine: the two-faced molecule behind addiction and Parkinson's
disease - video] that suggested a relationship between
dopamine and the level of wanting a reward - ie that reduced levels
of dopamine resulted in lower motivation.
But over the last few years I seem to have developed a
habitual lateness, a sort of inertia that prevents me from worrying
about getting ready to leave, right up to the last minute. I had
put this down to the frustrations and mild boredom of being a
stay-at-home mum despite wanting to be at work (or at least not
tied to school hours!), but now, I'm not so sure.
Can I put some of this tardiness, and the feeling that
knowing that it won't be alright) down to my
Dr Chaudhuri: Yes, it is possible.
Dopamine is the key hormone that mediates the reward sensation
and without dopamine most of us would become depressed and
The problem you have is known as 'apathy' and we now know that
this is linked to dopamine and other neurochemical loss in the
brain due to Parkinson's.
Fatigue may also be playing a part. Fatigue is common in
Parkinson's and is a sense of overwhelming tiredness without any
Unfortunately, at the moment there are no proven treatment
strategies for apathy although
cognitive behavioural therapy (CBT) in severe cases may help,
as can levodopa in some situations.
Pam: Should depression and anxiety in Parkinson's be treated with
drugs when it's impacting on the life of the patient?
Dr Chaudhuri: Anxiety is now
regarded as one of the commonest and most troublesome symptoms of
Parkinson's. Depression often
The answer to your question is yes. Both need to be treated
as soon as possible as this will lead to overall improvement in
Parkinson's. 'Off' periods in particular may be linked to marked
jogosm: I would like to know what advice to give to members
who are experiencing severe anxiety symptoms.
Is it appropriate to use all the usual techniques of
relaxation and panic control, and how successful can people with
Parkinson's expect this to be?
Dr Chaudhuri: Relaxation therapy certainly would be very useful
in anxiety disorder as explained before, but if this is anxiety
related to 'off' periods, then the dopamine therapy regime may need
to be altered.
Treatment could be targeted to improvement of 'off' periods with
longer acting dopaminergic drugs or anti-anxiety drugs or a
Bogman: I have a number of non-motor symptoms but the two
that concern me the most are sleeplessness and anxiety. At night I
get easily distracted and can often find myself awake at 4am having
maybe nodded off on the settee at 9ish for 20 mins.
Anxiety is a problem when I find myself as a passenger
in a car. It is getting to the point now where I am sure that
drivers will refuse me passage.
My question is how much influence on anxiety is
sleeplessness exerting? If I was to sleep more would the anxiety
lessen or would it not make any difference at all?
Dr Chaudhuri: It would be hard to say whether the sleeplessness
and anxiety are linked. Sleeplessness in Parkinson's has many
You can use the Parkinson's disease sleep scale (which your
specialist can administer) to identify the specific cause of your
sleeplessness. This can then be treated appropriately.
Anxiety has been recognised as one of the most common non-motor
problems in Parkinson's. Anxiety may occur when one is experiencing
an 'off' period (when your Parkinson's medication has worn off) and
this is known as non-motor fluctuation. Anxiety may also occur with
Your specialist might consider an anti-anxiety drug and/or a
longer acting dopaminergic drug which may reduce the
ali j: I've had Parkinson’s disease for 11 and a half years and I
am 43 years old. I have found over the last year that my
concentration and memory have got a lot poorer.
Can you tell me why this happens and what do you suggest
I can do to help myself and others in the same position as
Dr Chaudhuri: You mention that you've had Parkinson's for over
11 years. Problems with memory and
concentration are more likely to affect people with Parkinson's
at this stage.
If you are growing concerned about this, you should ask your GP for
a referral for an examination to test your memory and higher
Drugs such as rivastigmine might be helpful here, as would some
formal memory training tasks.
eddie: How likely is it that a younger person with Parkinsons will
go on to develop dementia?
Dr Chaudhuri: This is difficult to predict as the rates vary and
there has not been sufficient research done on why some people with
Parkinson's develop the condition and others don't.
While it is rare for someone under 65 with Parkinson's to
develop dementia, a recent study from Sydney suggests that the
longer someone has Parkinson's, the more likely it is that they
will develop dementia.
turnip: I have noticed from experience that dopamine agonists don't
work particularly well on visual-spatial problems (eg when driving)
and cognition but that levadopa does.
Is this because levadopa works on all the types of
receptors and DAs tend only on type 2?
Dr Chaudhuri: This is interesting.
Studies suggest that strong dopamine agonists such as apomorphine may improve contrast sensitivity
and colour perception.
Parkinson's affects colour vision and vision may be further
affected during 'off' periods. Any dopaminergic drugs that improve
or get rid of 'off' periods may help in this respect.
The effect on cognition is unclear. Both levodopa and dopamine
agonists may help certain aspects of functioning such as
depression but none are likely to
affect cognition which usually implies memory and dementia related issues.
More about mental health symptoms
Diet, and bladder and bowel problems
ali j: I've been told that too much protein can slow
down the dopamine getting to your brain. Is this correct? If so,
how do we know how much protein we have?
Dr Chaudhuri: A high protein meal (such as a large steak, for
instance) will slow down the absorption of levodopa in the blood
and therefore delay its effect. Therefore, eating a high protein
meal after taking levodopa is not advisable.
If you know that high protein meal is unavoidable, then taking
the levodopa approximately 15-30 minutes before your meal would be
a good idea.
Anne: I have had Parkinsons for two and a half years.
I took ropinirole for the first year and half, but due
to swollen ankles, I was switched to mainly Madopar, Selegiline and
a very tiny amount of ropinirole.
I am doing fairly well on this mixture, but I do have a
'bloating' problem at least once or twice a day. I can best
describe it as feeling like the Incredible Hulk. My clothes feel
too tight on me and I feel like I'm bursting out of
It seems to happen when I am just about to, or have just
taken, the next dose. My whole abdominal area feels extended. It
could take an hour before the feeling goes away, and sometimes I
have to lie down while it passes.
Any ideas as to what causes this and is there any
measure I could take to prevent it?
Dr Chaudhuri: Bloating in Parkinson's is often due to an
impaired emptying of the stomach. A dose of domperidone before
your meals might help.
You might also look carefully at your diet to see if you might
be eating too many foods that produce wind. A dietitian can help
you with this.
You may also need to be checked out for irritable bowel syndrome
(IBS). You can ask you GP whether this might be appropriate.
Tony: I have been diagnosed with Parkinsonism since 2004
and am finding that going to the loo for a dump is becoming more
irregular and difficult.
I often have a feeling of great urgency but once seated
on the loo don't seem to be able to invoke whatever it is that one
is supposed to do to initiate the dump. It is as if I've forgotten
what to do.
As soon as I have dressed, washed and departed the
feeling of urgency returns. I cannot ignore the possibility of
filling my pants, so return to the loo. This morning I awoke
needing the loo at 3.15am and it was not until 7.35am that I had a
Do you have any suggestions for making life a little
easier for me? (I am 63.)
Dr Chaudhuri: What you have described is the feeling of
'incomplete evacuation' that occurs in Parkinson's.
The first thing to do would be to look at your diet to make sure
that you're getting plenty of fibre and drinking a large amount of
fluid every day to avoid dehydration.
Certain painkillers can aggravate this problem such as those
containing opiate drugs (such as codeine or morphine), so it is
worth checking whether any painkillers you are taking are in this
If the problem persists, you might consider asking your GP for a
referral to a gastroenterologist.
parkwife: My husband wakes each morning with an unproductive desire
for a poo.
Our question is: a) What causes this? Is it lack of
dopamine? He is not taking any medication. b) What
is the best treatment? His diet is quite good with veggies and
whole grain bread etc.
Dr Chaudhuri: This is unlikely to be related to a lack of
dopamine. As you say his diet is good, this does not seem to be the
He might benefit from a laxative. However, before taking a
laxative, I would advise asking referral to a gastroenterologist.
This specialist can administer appropriate tests and treatment.
For more information on constipation, see the Q&A on bladder and bowel problems in
drobb: I've always had excessive wind (burping) on occasion
for as long as I can remember.
If I get up in the night and take a small drink of water
it hits my stomach and I burp before I've had time to get back into
bed. Why is this please?
Dr Chaudhuri: It is difficult to say what might be causing the
Excess wind can be caused by food, swallowing air, or a slow
emptying of the stomach which can be common in Parkinson's. It can
also be caused by some medications.
Your stomach may be sensitive but why you should burp after
drinking water is not clear. It may simply be a reflex. If this
causes you discomfort or worry, ask you GP to refer you to a
gastroenterologist for further investigation.
More about diet and bladder and bowel problems
Helena Gal: Is there any progress on finding diagnostic
lab methods (blood tests, imaging tests) to detect
Dr Chaudhuri: There is currently no blood test for
At the moment the best test we have is DAT-scan which can
indicate the approximate level of dopamine in the basal
Parkinson's UK is currently carrying out a large-scale study
called Tracking Parkinson's. The aim is
to find biomarkers, which are small changes in the body that can
tell how severe your Parkinson's is.
Having a biomarker for Parkinson's would help us to diagnose the
More about diagnosing Parkinson's
dee-em: I have had Parkinson's for 13 years, since I was
47. Can you tell me please if aching muscles and pins and
needles in the left foot is natural?
Dr Chaudhuri: Aching muscles can be caused by many things from
anti-lipid drugs (such as statins) to primary muscle disorders (eg
Aching muscles in Parkinson's may occur at night due to muscle
cramps or general dyskinesia, but this is rare.
I am aware of the sensation that you mention which feels like
pins and needles (paraesthesia) or 'formication' and pain in
general. I have recently developed a pain classification which will
become available later this year and will be the first of its kind
that specifically measures this. I have highlighted the importance
of pain in Parkinson's in my publications.
In fact, pins and needles occur in various forms in Parkinson's.
Formication is only part of it.
Pins and needles - otherwise known as paraesthesia - can have a
number of potential causes:
- Entrapment of nerves at the spinal cord, known as
radiculopathy, which is similar to sciatica
- Inflammation of nerves itself, especially the smaller fibres,
known as small fibre neuropathy. This is rare in Parkinson's but
seen for instance in burning mouth syndrome.
- Hallucinations caused by dopaminergic drugs which sometimes
cause skin based 'creepy crawly' sensations.
What you can do about the 'pins and needles' sensation depends
on the cause.
If it is related to the spinal cord then physiotherapy,
painkillers and in severe cases, an MRI and neurosurgical
consultation could be appropriate treatments.
If the sensation is neuropathic, then agents such as gabapentin
and or pregabalin (normally used to relieve neuropathic pain) along
with painkillers would be useful. A neurologist might also
recommend a nerve conduction study.
Finally, if the sensation is due to hallucinations then
optimisation or oral drugs might be an appropriate treatment.
For more information on physiotherapy, see the Physiotherapy and Parkinson's Q&A
Brenda: What medication should I take to alleviate neck and
shoulder pain which is quite severe and debilitating i.e.
painkillers or levodopa, etc?
Dr Chaudhuri: Pain in Parkinson's can be caused by a number of
factors. Parkinson UK's information sheet
on pain can be useful.
If pain happens most often in 'off' periods, you might benefit
from longer acting levodopa or other drugs such as dopamine
agonists to reduce the 'off' periods.
However, if the pain is present generally, then painkillers
starting with paracetamol and/or ibuprofen would be useful. In some
situations if the pain is severe, you may have to try alternative
agents such as gabapentin or pregabalin and/or opiates.
Ask your GP to refer you to a pain specialist if you feel that
the treatments you have tried are not working.
A new trial has started worldwide including UK called the PANDA
study which is recruiting people with Parkinson's similar to pain
such as yours. To find out more, contact trials manager Louise
Gallagher at: email@example.com
Mary: I get a pain from my left buttock to my knee. This
happens between 4pm and 8pm every day. Do you think
this will go away on its own? At present I am reliant on
painkillers as well as Parkinson's medication.
Dr Chaudhuri: It may do. But the regularity of the pain
makes me wonder if this related 'off' periods.
You need to examine whether the pain has a link with when your
dopamine drugs are wearing off and you are due to take another
tablet. If this is the case then longer acting drugs may help.
Also, the distribution of the pain may suggest a spinal origin.
In that case, you may need an X-ray or scan of the spine at the
relevant level. Talk to your GP about the problem as he can refer
you for a scan if appropriate.
More about pain in Parkinson's
Speech and communication
lil: Is early intervention by a speech therapist
conducive to a better outcome in the future for speech and
And are all people with Parkinson's entitled to such
treatment at an early stage in their condition?
Dr Chaudhuri: Yes, although hard evidence for the benefits of
this therapy is lacking.
A technique called Lee Silverman Voice Training can be especially
useful for increasing the volume of speech as this can become a
problem in Parkinson's.
Early speech therapy may also help with 'palilalia', a problem
where the speech becomes jumbled and sometimes difficult to
Early therapy also may also prevent saliva and swallowing
problems which are common in Parkinson's.
More about speech and communication
Other non-motor symptoms
Anstee: I understand that Parkinson's is known to cause
excessive sweating and it certainly has had this effect on
I have been referred to a dermatologist who in turn took
me to the 'Difficult & Unusual Clinic' to no
At my latest attempt, meds were suggested which turned
out to cause hallucinations when mixed with Venlafaxine, so that
was a non starter.
Have you any suggestions on how to deal with this
extremely antisocial problem?
Dr Chaudhuri: Yes excessive sweating is known as 'hyperhidrosis'
and is common in Parkinson's particularly in the 'off' periods.
If this is the case, ask your doctor to consider a longer acting
dopaminergic drug which will improve control of Parkinson's and
reduce these 'off' states.
For more information on sweating problems, see the Skin and sweating problems in Parkinson's
ali j: I suffer with swollen feet and ankles. I saw my GP,
thinking it might be water retention and maybe I needed water
tablets, but he said it's not. He said it is
Parkinson's-related. So could you tell me
if the swelling is Parkinson's-related, and what do you
advise I do please?
Dr Chaudhuri: The swelling of feet and ankles may be linked to
The most common reason in older people would be mild
heart problems and this needs specific treatment related to
blood pressure and water retention. Your GP can advise you on
In Parkinson's, swelling may also occur as side effect of
dopamine agonists, amantadine or levodopa.
If the swelling is associated with stretched red skin and is
painful, this may be a side effect of dopamine agonists such
as ropinirole or pramipexole.
More about other non-motor symptoms