What help is available?
Adjusting Parkinson’s medication may help, for example levodopa may improve your volume and clarity when speaking. However these benefits may only be felt when you are ‘on’ and medication is working well, so you may still find speech difficult if you experience ‘off’ periods. Your specialist will look at your medication regime to see if adjusting this may help your communication.
A speech and language therapist will be able to advise on ways to improve your speech such as:
- exercises and techniques to improve breathing, voice, speech and word finding difficulties
- equipment and special tools, for example amplifiers to overcome problems with volume, pacing boards to help with your rate of peech, iPad apps to give visual feedback
- advice on dealing with specific situations that make speech difficult, for example in a crowded room
- alternative means of communication if speech is very difficult to understand. For example, text-to- speech apps, Lightwriters (small, hand-held computers), or picture based communication aids
- monitoring your progress and adapting advice accordingly.
It is a good idea to see a speech and language therapist before speech problems become really noticeable. He or she will be able to suggest how to prevent difficulties before they arise or reduce their impact. They can also monitor your symptoms at regular intervals to assess how you are coping and suggest new strategies as appropriate.
Facial expression, tone of voice and body language
We all use facial expression, tone of voice and body language to convey our thoughts and mood. Reduced communication using these important tools may mean that you are misunderstood, or your non-verbal expression may not match your verbal communication, which can lead to confusion.
A speech and language therapist can teach you to use hand and body gestures to convey meaning that may be lacking in facial expression. He or she can also teach you ways to let people know that you have something to add to a conversation if this would not otherwise be picked up by those around you.
A speech and language therapist can also use visual tools to enable you to alter the stress and emphasis you put on words when you are talking. Working on vocal pitch, stress and emphasis has been shown to improve how well others understand you.
A physiotherapist will be able to help you with techniques and exercises to reduce rigidity and strengthen muscles to give you greater control over your body language.
An occupational therapist can advise on ways to improve your handwriting. They can recommend special equipment and tools, such as:
- thick or padded pens that are more easily gripped
- weighted cuffs to improve control
- clipboards or a non-slip mat to stop paper from slipping
- recording devices to aid memory and recall
See also: Speech and language therapy and Occupational therapy.
How can I help myself?
- If you are in a situation where you find communication difficult, try to remain calm and relaxed - stress will only make your symptoms worse.
- Make sure you are sitting or standing comfortably, in as upright a position as possible. Voice quality can be affected by the stooped posture often associated with Parkinson’s.
- Keep your sentences short and take more frequent breaths.
- Speak clearly and slowly. This may take practice.
- Try to imagine your voice hitting the other side of the room.
- If someone doesn’t understand you, think of an alternative way to communicate what you are trying to say.
- Try to move away from noise.
- Don’t try to talk to someone in a different room.
- Try joining a singing group as breathing exercises and general exercises for your voice can be helpful.
- There are various gadgets and adapted telephones that make talking on the phone easier – a speech and language therapist or occupational therapist can advise further.
- If speech is very difficult a computer can be useful for keeping in touch using email or various chat programmes that enable you to type your responses in a conversation.
- Carry an alert card in your purse or wallet that states you have Parkinson’s and may have difficulty communicating so need to be given time. The EPDA has an online PD Doc with useful messages translated into 25 languages. You can choose your language and enter personal details before printing to keep with you in case you get into difficulties when out and alone.
- Try using a tape recorder if your speech is unaffected. A tape recorder will put into words things you want to write, or you may find typing on a computer helpful.
- Pick a time of the day when you are ‘on’ and symptoms are most controlled. This may not always be practical or possible, but writing can be far less frustrating if timed well.
- It may also help to stop writing after each line and then relax, breathe deeply and stretch the arms widely before continuing.
- Signing cheques or other documents may be frustrating when your signature is not consistent. Using a Chip and PIN card may be easier as you need only to enter numbers on the keypad. If you do have to write a cheque, it is worth asking the bank or shopkeeper to fill in the details so all you have to do is sign. You can also shorten your signature so that it is easier to write – but make sure your amended signature is the one registered with your bank. In some instances carrying a form of identification with a photo, such as a passport, can be useful, or some banks may be able to issue a bank card with photo. In some countries rubber stamp signatures are acceptable, but this is not the case everywhere.
- Set up standing orders or direct debits from your bank account for regular expenditure, or use telephone banking.
For family, friends and carers
Communication difficulties also affect family, friends and carers. Problems can be frustrating to deal with and misunderstandings may arise. The following suggestions may help when communicating with someone who has Parkinson’s:
- Be patient and give them plenty of time to collect their thoughts and communicate. Don’t walk away while they do this.
- Don’t interrupt and finish their sentences for them.
- Talk normally, without shouting or sounding stressed or impatient.
- Make sure you are both in the same room and can see each other.
- Listen carefully and turn off any distractions such as the radio or television.
- If you don’t understand something, ask them to repeat it louder and slower. Don’t pretend that you have understood if you haven’t.
- Encourage them to engage in a conversation but without putting them under pressure.
- Reassure them if they have difficulty communicating. A simple squeeze of the hand can be very calming and encouraging.
Your healthcare team
Building a good relationship with your doctor and other members of your healthcare team, is an essential part of living with Parkinson’s. You and your team are partners throughout your journey, and this partnership begins from the moment you receive your diagnosis. Both parties will want to get off to a good start and form a solid basis for ongoing dialogue and support. This will mean that you are comfortable expressing yourself and confident in the advice you receive. Establishing an easy and relaxed relationship with your healthcare team can enhance your quality of life and will help you to manage your Parkinson’s as well as is possible.
Like all relationships, it requires effort on both sides to make it successful. Your doctor or other professionals in your team need to be open and approachable and must be able to understand your needs well. To achieve this you need to provide the information they require honestly, neither glossing over difficulties you encounter nor exaggerating them. Trust is also an integral part of a good relationship and this too requires effort and commitment - you both need to engage with each other, be open and transparent so that you make the most of the time together.
For further information see Creating your healthcare team and Appointments with your healthcare team.
Support groups and networking
There are many different types of support groups. But they can broadly be defined as a group of people who have something in common - in this context Parkinson’s - who meet to discuss and exchange ideas and information, or voice concerns. The group may also include partners, family and/or carers.
Each group will be individual with varying activities, meeting places, opportunities and capabilities. Sometimes there is a trained leader, such as a counsellor or social worker, although many Parkinson’s groups are run by people with the condition as well as experienced volunteers. Groups often meet once a month, but many meet more regularly.
Most members find participating in a group supportive and a good way to interact with others in a similar position. Many Parkinson’s organisations have support groups. To find out about how groups operate in your own country contact your national Parkinson’s association.
Support groups and Parkinson’s
A support group is not a substitute for the support of family and friends but can provide an opportunity to:
- make new friends and enjoy the social opportunities support groups offer
- extend your support team which can make it easier to get the help you need, when you need it
- provide support for your carer and close family
- minimise feelings of isolation and having to cope with Parkinson’s alone
- share personal experiences and learn from these
- share practical ideas to help with day-to-day living and difficulties you encounter
- share medical information and sources of information on Parkinson’s
- share concerns with people outside your close family and friends, who you may find it easier to talk to
- learn about clinical trials and opportunities to participate in them (but it is important to discuss this with your doctor before committing yourself).
Deciding to join a support group is a very personal. If now doesn’t feel like the right time to join, take note of group details and later you may feel that the support offered could be helpful.
If you’re unsure, it may be useful to attend one or two meetings before you commit to joining a group. Talk to members to find out more about what the group offers and any aspects that are of particular interest to you. Remember that almost everyone is apprehensive about going first time, but if after several meetings you don’t feel comfortable then see if there is another local group as no two groups are the same.
The Parkinson’s association in your country may be able to provide contact details for local groups. Your care team may also have suggestions or you could look in your local library, local newspaper, or on the Internet.
If there isn’t a group in your area then you might want to consider setting one up. Your national Parkinson’s association may be able to provide helpful information on starting a new group.
Networking has many similarities with support groups; it connects people with similar interests who can help each other by sharing information and opening up opportunities for mutual benefit, but without the organised meetings of support groups. Networking operates via the Internet on social networking sites such as instant messaging, blogs, forums and message boards. These provide the opportunity to ‘chat’ with others simply by typing your comments and queries.
Networking allows you to interact outside of set meetings at any time of the day or night. The anonymity of networking is particularly attractive if you are concerned about getting too involved in face-to-face support groups. However, many people find that Internet groups are a useful addition to - but not a replacement for - actually meeting with others to share your concerns, especially when dealing with a condition such a Parkinson’s.
As with any online communication, it is important to be vigilant about providing personal information. Never give anyone you do not know or trust any personal information such as your address or details of bank accounts or credit cards as this may be used fraudulently. For more information see Using computers and the Internet.