Who really is the expert?

I have worked in this field for so many years and yet each Facebook group postings I read  and whenever I talk with PWP I realise that no matter how much we go on about changes and expert patient and patient empowerment t simply doesn’t happen expert in very few cases. I recently came across and group called the non motor symptom group who were trying to develop a nonmotor symptom questionnaire for the assessment of their symptoms. In reality the tool had been developed about 15 years ago by Prof Ray Chaudhuri and his team at KCH London. The tool had been translated into many languages and has been based on research and evidence based practice. Yet this group of people from all over the world were and still are in some cases unaware of the tool existence. Is this because unless you are under a Movement disorder centre in London or around the world that the information is not shared? is it because the clinical experts do not share the information  with those who matter most? and that being the person living with the Parkinsons? .

From years of working in this field I learnt very quickly that although I can assess a PWP physically I can never feel their on and off periods. Their painful dystonia or their pain in general? . I can see them going off in clinic or coming “On” but I cant feel that sensation. I cant read their day and their symptoms. Surely then the expert must be the person living with the Parkinsons and their families?. But although they are the ones experiencing their symptoms how can they assess their symptoms or name their symptoms if no one has ever named them or explained them from diagnosis. Many PWP and their carers and families learn very little about what they are living with as their clinics are often ” how are you? ” I am fine  that’s good see you in 3 months or 6 months. But where is the education?

It is assumed that the PWP can look their symptoms up. But how can they look up what they don’t understand? and  when their symptoms don’t have a name? . In many other conditions such as diabetes and cancer information is given out from the diagnosis. It is compulsory for newly diagnosed people with diagnosis are encouraged to join the expert patient training. In Cancer the diagnosis is given followed by explanations and care planning and treatments are discussed. When is DBS Apomorphine and Duodopa discussed in Parkinsons? do the PWP get the options of medications or are they just given a prescription and told to take the treatment? How many are offered reviews by the Multi Disciplinary team such as Physiotherapy Speech and language therapy ? How many understand the role of the MDT and why they are being referred to them? If they don’t understand that speech and swallowing are often part of the symptoms of Parkinsons  how would they be expected to understand the reason for the referral? so why would they attend the appointment ?

Why are the professionals reluctant to pass their expertise on to the PWP at diagnosis? is it the lack of time? is it the fear  of giving too much information too soon? when in reality the PWP is out there often alone searching out of fear to start to understand the diagnosis of the incurable movement disorder that has just landed in their lap? there are no care plans no patient pathways to follows and often just twice yearly clinic reviews for a total of 30 minutes.

However change can only come form the patients groups and the PWP themselves. I have attended many conferences over the years and many expert nurse classes but in reality have seen very few changes in the diagnosis procedures or the way diagnosis and follow ups are handled. Until we have patient lead clinics and research will things ever change? will the QOL of the PWP and their families improve? or will the experts remain being the clinician who is some cases are less experienced and less expert in Parkinsons than the person they are treating ?

Take Control : what to do if your Parkinsons symptoms suddenly get worse

When treatments for Parkinson’s disease are changed most people notice an improvement in their symptoms. Occasionally a change in medication can cause a worsening of symptoms. If the dose has recently been increased or a n

Common side effects include:

•  Nausea and vomiting
•  Feeling dizzy or lightheaded (sometimes due to low blood pressure)
•  Feeling tired and sleeping excessively during the day
•  Involuntary writhing movement termed as ‘dyskinesia’
•  Confusion
•  Hallucinations (seeing or hearing things that are not there)

Avoid abruptly stopping medication without first discussing it with a healthcare professional. Drug information can be found on the leaflet supplied with your medications

 Urine infection can cause a worsening of PD symptoms.

Symptoms of a urinary tract infection (UTI) can include:

•  Confusion
•  Passing urine more often (sometimes)
•  Discoloured or cloudy urine (some drugs used to treat PD may discolour urine)
•  Unusually unpleasant smelling urine
•  Pain on passing urine ( Not always recorded by PWP)
•  Passing blood in your urine
•  Abdominal Discomfort
• Generally feeling unwell
• Raised temperature or feeling feverish (Not always experienced by a PWP)If a urine infection is suspected, seek advice at your GP surgery. urgently. Take a  sample of urine with  you for testing. (DO NOT DELAY STARTING ANTIBIOTIC TREATMENT AS ANY DELAY WILL CAUSE THE UTI TO WORSEN WITH THE RISK OF HOSPITAL ADMISSION.)
• Chest Infections may also worsen your Parkinson’s. Symptoms include:

   Persistent chesty cough

   Feeling breathless or wheezy

   Coughing up yellow or green phlegm

   Raised temperature

   Chest pain

   Generally feeling unwell

  If a chest infection is suspected seek advice at your GP surgery. Not all infections require antibiotics.

  If you are having problems with swallowing and find you are coughing when eating and drinking, or have suffered multiple chest infections, it may be linked to your Parkinson’s. Most people with Parkinsons are offered an assessment with the speech and language therapy team at diagnosis or soon after to assess your swallow as well as the cough reflex and the tome of your voice. Often in put of the SALT can prevent chest infections occurring. Aspiration can be a symptom of your Parkinsons and is easily diagnosed by the SALT team.

   Other infections may also cause problems with your PD. You will need to rest and drink plenty of fluids. Regular taking of paracetamol should help to treat fever and any aches and pains you may have.

   Constipation

  This is common in the general population particularly as we age. Mild constipation is not uncommon in PD and it could result in a worsening of your symptoms. Constipation can usually be managed by a healthy diet with plenty of dietary fibre, fluids and exercise. Sometimes laxatives such as Movicol may be required. See the Parkinson’s UK factsheet “Looking After Your Bladder and Bowels” for further information.

  Chronic constipation can increase the risk of faecal impaction (where dried, hard stools collect in your rectum). Once you have faecal impaction, it is very unlikely that you will be able to pass the stools naturally, and this can cause the leaking of liquid stools which is sometimes mistaken for diarrhea. Any treatments to help diarrhoea will only make the problem worse.

  A healthy diet, regular exercise, fluids, and fibre will contribute to healthy bowel management. Take note of your regular bowel habits. Take any laxatives regularly rather than as required as this will allow your bowel to get into a routine. You may find you need to take your laxatives twice a day, or it may be every 3 days, you will work out what suits you best. If you deviate from your normal pattern, you will need to visit your GP or practice nurse for further treatment or advice. Leaving constipation untreated can cause worsening of PD symptoms, UTI’s, confusion, or even hospital admission.

   Dehydration is common in the general population. Sometimes if severe this can make your Parkinson’s worse. You should aim to drink 1.5 litres of fluid a day, possibly more in hot weather or if you are ill with diarrhoea etc. Symptoms of mild dehydration include:

   Thirst

   Dizziness or light-headedness

   Headache

   Tiredness

   Dry mouth, lips and eyes

   Concentrated urine (dark yellow)

   Passing only small amounts of urine infrequently (less than three or four times a day)

  To avoid severe dehydration increase your fluid intake and address any potential causes such as diarrhoea or infections. Symptoms of severe dehydration include:

   An inability to urinate, or not passing urine for eight hours

   Irritability

   Sunken eyes

   Low blood pressure (hypotension)

   Weak pulse

   Rapid heartbeat

   Cool hands and feet

   Fits (seizures)

   Low level of consciousness

   Feeling tired (lethargic) or confused

   Blood in your stools (faeces) or vomit

  Severe dehydration is a serious condition; you will need to seek medical help quickly as you may require admission to hospital.

• parkinsons and emergency admission

  Other changes in your health will contribute to worsening of your PD symptoms. A common cold or un-controlled pain has the potential to affect your Parkinson’s. Once the underlying cause for the deterioration of your Parkinson’s has been successfully treated your Parkinson’s should return to how it was within a few weeks. If  your Parkinson’s is still causing a concern please contact your Movement disorder team or your GP for further advice.

   

Cardinal signs in Parkinsons

Constipation: Often caused through dehydration ,reduced mobility, poor nutritional intake, and poor absorption the gut (of the person with Parkinsons) from the nutritional and fluid intake. Everyone’s bowel movement vary from daily to every 2 days. In Parkinsons it needs to be daily in order for the medications to be effective as they are ineffective trying to work through a constipated bowel. Untreated constipation can lead to hospital admission for weeks to empty the bowel over many days. If constipated is suspected I suggest increasing fluid intake. increase exercise where possible. Increase fibre in take only if you are drinking adequate fluids. Fruit and vegetable in take increased can help some. Consider short term use of Movicol sachets which are available through your GP. If its really problematic then the practice nurse or district nurse can offer an enema to empty the bowel and then take regular laxatives. Prunes Figs linseed oil and many other things are also available and can be effective in some. Don’t delay resolving constipation as it needs to be taken serious to avoid hospital admission and deteriorating Parkinsons symptoms.

Dehydration

Dehydration in PWP can occur any time of year not just in hot weather. A PWP sitting in a hot centrally heated room are as prone to dehydration as a person sitting in direct sunlight in Summer. When I am in clinic I ask PWP “do you ever feel thirsty?” often the answer is no. Take this scenario onto a ward or even at home . They don’t ask for fluids and no one offers them fluids then they simply dehydrate. Alcohol tea and coffee dehydrate so drinking water in between helps. Many people simply do not like drinking water and are unlikely to change their habits. Juice diluted with water can be an alternative. soup ice cubes ice lollies are all good sources of fluid as are fresh fruits.

What are the reasons my parkinsons symptoms change rapidly and I become unwell

The main cardinal signs to look for when your Parkinsons symptoms change suddenly:
Urinary Tract Infection: people with Parkinsons may not necessarily develop symptoms of burning or develop urgency in running to the toilet of have a temperature. A sudden change in symptoms in Parkinsons you should be assessed by your GP and started on antibiotics straight away without delay. Take a sample of urine along with you to the practice to be tested. The NICE guidelines UK recommend treatment is started while waiting for the result of the urine testing. UTI’s are often caused through poor fluid intake simply because PWP often don’t feel thirsty and fail to drink adequate amounts of fluid.