Good management of Parkinson’s – including physical, emotional and social needs – lies in getting the right treatment for the right person at the right time. There is no ‘one size fits all’.

Here’s how you and your healthcare team can support each other to manage your individual needs as well as possible:

Sharing information with your healthcare team

Understanding exactly what information your healthcare team needs to know and remembering everything you need to tell them in the time available isn’t always easy. But without accurate and appropriate information they cannot get a full picture of what help you need and suggest the best treatment options.

Keeping a Parkinson’s diary

Use a paper or digital Parkinson’s diary to keep a note of your symptoms and anything you’d like to discuss with your healthcare team.

Here are some of the areas you might like to think about:

  • Your symptoms and medication: Make a note of which symptoms are currently affecting you and when they occur. You should also record all the medication you’re taking, how well it’s working, when it wears off, and any side effects you’re experiencing.
  • Daily routine and activities: Note activities that are becoming more difficult, such as eating, swallowing, turning in bed or bladder and bowel problems. Also note what help family or carers now provide. You may also find it helpful to look back on how you were at your last appointment and compare then and now.
  • Mood and mind – non-motor symptoms: Record the times when you feel down, anxious or stressed. It is important to tell your doctor so that they can make sure you get the support you need from the MDT (Multidisciplinary Team).
  • Embarrassing problems: It is easy to brush awkward problems aside but if ignored and untreated they are likely to get worse. It’s important to tell your doctor about issues like sexual difficulties or incontinence so they can suggest treatments.
  • Your partner or carer: Your doctor will also be keen to know how your partner or carer is coping so do say if you think that they are struggling with or have health problems of their own.

Planning appointments

Appointments may be shorter than you would like, so it’s important to make the most of them. The following tips may be helpful:

  • Try and vary appointment times so you doctor can see how your symptoms change you when you’re both “off” and “on”.
  • Make a list of questions in advance – for example do you think your medication needs to be reviewed, would you like to see a therapist, would you like advice on different types of treatment or alternative/complementary therapies?
  • As well as your Parkinson’s diary, bring spare paper with you so you can make notes about what the doctor says. You might also find it helpful to take a loved one with you to your appointments to make notes for you.
  • Don’t put on a brave face – be honest about how you are coping.
  • Ask questions and summarise next steps to make sure you’ve understood everything.
  • Keep a log of all your appointments and what was discussed and with whom.

 

 

Medication

  • Ask your pharmacist to use non-childproof bottles for your medications so that they are easier to open, and to use large print on instruction labels.
  • Use a pill box with compartments for each day of the week.
  • A timer can help you remember when medications are due.
  • Keep a medication record to help you and your doctor monitor your responses to medications. See Keeping a Diary for suggestions.
  • Keep a copy of your medication record with you at all times in case of unforeseen situations.
  • Ask your partner, carer or a friend to accompany you to the doctor or nurse for medicine reviews, as it can be difficult to remember everything that is said.
  • Take extra medication with you when you go out in case you are delayed returning home.
  • If climbing out of bed is a struggle, keep your morning dose of medication on your night-stand. You may also like to keep some biscuits nearby if the medication causes nausea.
  • If swallowing pills is difficult, try taking them with a spoonful of pureed fruit or yoghurt instead of water. Also, ask your doctor or nurse if your pills can be crushed or dissolved in water, or if they are available in a liquid or injectable form.

Hospital visits

Going into hospital can be an anxious time for people with Parkinson’s, and it can help to be well prepared – for both routine admissions and emergencies.

Never be afraid to ask questions in hospital so you can make an informed choice, and tell staff if you think your medication is being missed or given at the wrong time. You’re not a nuisance – hospitals are busy places and everyone needs a reminder sometimes. Just make sure you’re respectful of all staff.

Emergency admissions

Procedures are different in each country, but there’s a good chance emergency healthcare professionals won’t have as much knowledge of Parkinson’s as your regular doctor or neurologist. Some things you can do to prepare include:

  • Carry with you a list of contacts for your partner, carer, close family and your doctor.
  • Discuss potential emergencies with your partner, carer or close family – let them know where they can find important information like medication records.
  • Tell staff as quickly as possible that you have Parkinson’s and that it is important you take your medication on time. Your loved ones may need to remind staff about this.
  • Ask for your own doctor or Parkinson’s nurse to be contacted as soon as possible so that they can talk to your hospital care team and share information.
  • Keep an up-to-date medication record with you at all times, which includes all the medication you are currently taking (not just for Parkinson’s) and what time you take each dose. Staff may want to keep a copy in your hospital notes.
  • You could also wear a bracelet or necklace with your important contacts and medical information.
  • Always carry at least a 24-hour supply of your medication with you.
  • Tell staff if you have had Deep Brain Stimulation and show them your patient ID card.

Planned/routine hospital admission

If your admission is planned, there’s lots you can do to prepare for your stay in hospital:

Keep an up-to-date medication record

This should include all the medication you are currently taking (not just for Parkinson’s) and what time you take each dose, any known side effects or allergies, and your doctor’s contact details. Take it with you – could also leave copies with members of your family or carers.

Make sure people know you have Parkinson’s

You may want to wear a special MedicAlert bracelet or pendant that provides contact details and medical information.

Preparing medication for admission

Medication must be kept in its original packaging – you will not be able to use your medication in hospital without this, even in an emergency. Check that the dosage written on the labels matches what you are actually taking. You should have at least 24 hours’ supply to make sure you don’t miss any doses.

Apomorphine and Duodopa

If you take Apomorphine or Duodopa, make sure you have the penject/pump and accessories with you on admission, or as soon as possible after, as it’s unlikely the ward will have this equipment. Ask your doctor to inform hospital staff how to administer the pumps.

Organise your home and work life

If you’re going into hospital and live alone, it’s a good idea to think about any arrangements you need to make such as cancelling deliveries or appointments or finding a pet sitter.

You may find it useful to put items like the TV remote control, phone, and books and magazines on a table next to a chair or bed, where you may be spending a lot of time when you return home. Stock up on easy-to-prepare food and essential household items.

If you work, talk to your employer about your needs before you go into hospital, and discuss whether you might need a phased return to work.

Pre-admission assessment

If your admission is planned, the hospital may invite you to a pre-admission assessment with a doctor or nurse. This is an opportunity for you to discuss your health, medication requirements, and any specific needs you have because of your Parkinson’s.

If the hospital doesn’t have a pre-admission assessment process, you can discuss your needs when you are admitted.

Deep Brain Stimulation

It is important to make staff aware if you have had Deep Brain Stimulation surgery, as this comes with important medical requirements. Take your patient ID card into the hospital with you.

Medication

Whether or not you can be responsible for your own medications in hospital will depend on the hospital you are going to. If you have time, contact the hospital to find out about their policy on self-administering medication and ask:

  • Where will my medication be stored on the ward?
  • If medicines need to be locked away, who will have the key?
  • Who will update my drugs chart when I take my medication?
  • Will I get my medication back when I am discharged?
  • Will I be issued with a new supply of medication?

On the ward, keep taking your medication on time, and inform the nurse so that it can be recorded. If at any point you feel too unwell to continue self-administration of medication, make sure you tell a member of staff on the ward as soon as possible.

It is important that you get your medication on time, so don’t be afraid to remind staff each time your tablets are due, as this helps to control your condition effectively. If you miss a dose of medication or it is omitted, the reason should be given on the drug chart. If a dose of medication has been omitted in error, this should be reported and recorded to reduce the risk of this happening again.

If you have ‘on/offs’, make sure the staff understand that your ability to do things will change during the day. You may need more help when you are ‘off’ than you do when you are ‘on’. For more information see Off Periods.

Equipment

At home, you may use equipment to help with daily tasks. You should check with the hospital if you need to bring these with you. If so, label it clearly.

Sleeping

Wards can be busy and bright places, even at night. Try and stick to your regular sleep routine, and let staff know if you’re struggling. Ear plugs and a sleeping mask can help.

Eating and drinking

If you usually have a special diet – thickened fluids, pureed meals or a tube feed for example – this will need to be ordered through the hospital dietitian, so discuss this at your pre-admission assessment. You should also let ward staff know if you use any special equipment to eat and drink with. You may find it useful to ask your friends and family who visit to bring in extra snacks.

Using the bathroom

It’s important to discuss any concerns you have about using the bathroom at the pre-admission assessment. These may include whether you usually use a handrail or a raised toilet seat, whether you can get to the toilet without help, and if you have bladder or bowel problems.

Walking around

Floor surfaces, furniture and the distances you need to walk will all be different in hospital. There may also be extra people and obstacles. It may be possible to get special equipment, or a bed that is closer to the bathroom, if you tell staff. A physiotherapist can also help.

Communication

If Parkinson’s affects your ability to communicate, make sure the hospital staff know about this. A soft, quiet voice may be difficult to hear on a noisy ward, and some people may take a while to get used to your speech patterns or lack of facial expressions. If you are having particular problems with communication in hospital, a speech and language therapist can help.

Benefits payments

Going into hospital may affect any state benefits you receive. This will depend on how long you spend in hospital and what benefits you receive. Ask hospital staff, your doctor or social worker for information on any action you should take regarding benefits.

Parkinson’s medications and surgery

It’s important you can keep taking your Parkinson’s medication as close to the time of your surgery as possible, and as soon as possible after the operation. You are usually allowed to keep taking your medication with a few sips of water until you go to theatre, or alternatively you may receive replacement medication via a transdermal patch.

Your anaesthetist will discuss plans for this with you before your operation, including how medication might be administered to you if the operation is taking longer than planned. They will also be able to discuss which kind of anaesthetic is most suitable for you, any risks or side effects and what pain relief you may need afterwards.

Depending on the procedure, you may not be able to take oral medication after surgery. Different approaches may be used to ensure continuation of dopaminergic replacement therapy. This could include a rotigotine transdermal patch, or apomorphine which is administered subcutaneously (under the skin).

If you normally take oral dopamine agonists and are ‘nil by mouth’ due to surgery, you may be switched to a dopamine agonist patch. The patch is applied to your skin and, once in place, lasts for 24 hours. It will deliver the same dose of medication as you would normally take orally. Your specialist can advise your surgical team about this.

Parkinson’s symptoms and surgery

Your anaesthetist will discuss your Parkinson’s symptoms with you and how they may affect you during surgery.

Low blood pressure

Some people with Parkinson’s may experience problems with low blood pressure – you should let your anaesthetist know if this applies to you. Parkinson’s can also cause people to have higher blood pressure readings when lying flat. To help minimise the effects of low blood pressure, keep drinking plenty of water; adding salt, i.e. a bag of crisps with your lunch time sandwich, will also help.

Involuntary movements (dyskinesia)

Dyskinesia is involuntary and uncontrollable movements that may affect procedures such as x-rays, scans or radiotherapy, when you need to keep still. Radiographers usually have techniques such as putting foam wedges in place to help overcome this, but it is important to talk to your healthcare professional about your movement problems before any procedure. Sometimes for CT or MRI scans, you may need to have a general anaesthetic or be sedated so you can keep still.

Saliva control and swallowing problems

Some people with Parkinson’s develop problems controlling their saliva, which can lead to drooling or dribbling. Speak to your healthcare professional if you have any concerns about saliva control or swallowing problems during surgery.

When you leave hospital

Before you are discharged, healthcare staff should assess what support you may need when you leave hospital, and this should be recorded in a written care plan. You should not be discharged until the support you will need has been put in place.

Check with the ward staff that you will be given enough medication for when you get home. This is especially important if your medications have been changed during your stay in hospital, as you may not have stocks of this medication in the right doses at home.

Will having Parkinson’s affect my recovery time?

Being in hospital can be stressful and having Parkinson’s may mean you need longer to recover than someone who doesn’t have the condition. If you have any concerns about this, talk to the healthcare team.

If you are unhappy with your treatment

If you are unhappy with the treatment you receive in hospital, you may want to complain. You should raise your concerns with the ward staff first if you are in hospital.

By complaining, you can improve care for both yourself if you go into hospital again, and for other people affected by Parkinson’s. Don’t worry about how a complaint will affect your future care – hospital staff are committed to providing the best possible care for all patients, and complaining can highlight issues. You may also like to let staff know when things have gone right. If you feel the care you have received was excellent, compliment staff and write to hospital managers when you get home.