Who else can help me manage my Parkinson’s?
Treatment does not just rely on medical treatments, such as medication and surgery. There are many other professionals who will play a vital role in managing your Parkinson’s including speech and language therapy, physiotherapy and occupational therapy.
The multidisciplinary team (MDT) is a group of specially-trained professionals which your doctor will bring together to treat each of your symptoms, including the emotional and psychological, as well as the physical. Using their various skills they can help you to manage your condition as effectively as possible. The team’s wide ranging expertise will enable them to advise on a number of aspects of Parkinson’s which specifically affect you, from medication and mobility to drooling and diet.
Remember that you are a key part of the team and it’s important to try and build good relationships with all involved, so that you feel comfortable in discussing any problems that you may have. The MDT will want to include you in making decisions about your care, and by monitoring your symptoms and how effective treatment is will be invaluable information to them.
The professionals who are part of your team may vary depending on the country in which you live, there is no standard template for who is included in the MDT and professional titles may vary between countries, too. In fact your MDT members will vary as Parkinson's progresses and your needs evolve.
See also Therapists and multidisciplinary care and Creating your healthcare team.
What is speech therapy? How can it help me?
Speech and language therapy helps people communicate to the best of their ability and can also help with eating, swallowing and drooling difficulties. Speech and language therapists work both in hospitals and in the community.
Ways in which speech and language therapy can help include:
- Providing exercises to improve communication on a one-to-one basis, or in a group
- Advising on specific communication difficulties
- Providing breathing and postural techniques to facilitate better voice and overall communication
- Offering tips and strategies to make particular activities easier, such as talking on the telephone
- Recommending special tools and equipment to aid communication
- Assessing and treating difficulties with eating, drooling and swallowing
- Providing advice to carers.
See also Speech & language therapy.
What is physiotherapy? How can it help me?
Physiotherapy aims to keep you moving safely and independently, and to help you keep your body in as good a working condition as possible. You can support this by:
- exercising regularly
- recognising when you may need to visit a physiotherapist
- getting the most out of your physiotherapy appointments.
A physiotherapist’s role is to prevent, stabilise and reduce movement related problems. In Parkinson’s this generally means focussing on functional activity and your ability to perform transfers (for example, getting in and out of bed or a chair), posture, safe reaching and grasping, dexterity, balance and walking (gait).
Physiotherapists work in hospital and community settings as well as in people’s homes. Ideally they work as part of a multidisciplinary team involving many different types of healthcare professionals to offer comprehensive care and so improve quality of life.
See also Physiotherapy.
What is occupational therapy? How can it help me?
Occupational therapy promotes good health and wellbeing by helping people regain their independence and adapt to disability, often with the aid of special equipment and through the modification of the person’s environment. It can enhance quality of life by removing barriers that prevent independence and limit every day, routine activities.
An occupational therapist can assess your home, work and leisure activities, and identify solutions to overcome the obstacles that may hinder you in certain tasks. By addressing these obstacles (especially if you are referred early), the therapist can ensure that you maintain as much independence as possible, and adapt more effectively as Parkinson’s progresses. Because Parkinson’s is a progressive condition, occupational therapists are likely to remain in contact with you and your family for many years.
See also Occupational therapy.
How soon can I see a therapist? How can I make contact?
Most health and social care professionals recommend early referral to their services for assessment and advice, so that they can help you to maintain a good quality of life from the outset and prevent any problems from worsening.
Referral procedures depend on the country in which you live and treatment may or may not be accessible through its national health system. Your doctor or other healthcare professionals should be able to advise you on how to access services in your local area. But if you cannot obtain state-funded treatment, you can also see a therapist on a private basis, this means you have to pay for any treatment and assessment you receive.
When and how often you see the therapist will depend on your symptoms, the services available in your area and your individual treatment plan.
How often will I see my Parkinson’s specialist?
How often you see your Parkinson’s specialist will depend on where you live and the available services. In some countries you may be able to see a specialist for many of your appointments, whilst in others you may see your doctor for most appointments and your specialist less often.
The nature of your symptoms and the rate of their progression will also be a factor.
I have heard of “wearing off”. What is this?
“Wearing-off” is the term used when the effect of a medication, usually levodopa, literally “wears off” or becomes less effective. The term “early wearing-off” is also used to mean the same thing, referring to the fact that over time the effectiveness of a dose tends to wear off earlier than before.
When “wearing-off” occurs Parkinson’s symptoms either re-emerge or worsen before the next dose of medication is due. This tends to begin to happen over a period of time as Parkinson’s progresses and when it does the control of both motor and non-motor symptoms fluctuates. This phenomenon is very individual and there is no standard time frame for when this may take place or what symptoms you might experience.
The range of “wearing-off” symptoms is very broad so any changes in your usual pattern should be discussed with your doctor who may be able to adjust your medication regime to help control these symptoms better.
If I keep a diary will it help my doctor to monitor any changes in my symptoms and medication?
Keeping a diary can be very helpful in monitoring how the symptoms of Parkinson’s affect you and how you respond to your medications, including adjustments that are made over time. A written record can be an accurate reflection of your life with Parkinson’s over a period of weeks, months or years and can help in highlighting:
- the pattern of symptoms you experience
- the effectiveness of the medications you take and how long they last
- any side effects of medications
- any changes in your emotions or behaviour that may be related to medications.
Writing down your own individual experiences on a day-to-day basis can also help you effectively communicate any changes to your symptoms or your feelings with your doctor. This can be very useful, particularly as appointments are often too short for doctors to ask lots of questions, and your visit may be on a day when your symptoms do not follow their general pattern. Being able to review how you have been over a period of time can help your doctor:
- understand how effective medications are for you personally
- pinpoint any particular difficulties or patterns of symptoms
- decide on any necessary adjustments in medication dosage.
See also Keeping a diary.
Are there any devices, tips or tricks that could help me manage my symptoms better?
An occupational therapist will be able to advise you on devices to help you. There are various types of special equipment and environmental adaptations that can be introduced, including hoists, grab bars, stair lifts and devices to make handwriting, cooking, washing etc easier.
If I go to hospital, what happens about my medication?
It is vital to get the right medication at the right time every time, not just at the set times scheduled for hospital medication rounds, in order for your symptoms to continue to be well managed and to speed up recovery. If admission is as an emergency, this can be more difficult as staff may not have a clear picture of your needs and may be very busy, so it is a good idea to discuss this scenario with those close to you so that they can liaise with staff on your behalf.
For any admission it is essential that staff have clear notes regarding your medication. A medication diary [LINK to Keeping a diary] can be very helpful with this, specifying:
- dosage and timing of each medication you have to take, including complementary, trial, non-Parkinson’s medications and over the counter medications
- clear instructions on how each medication should be taken, eg with food, with water etc.
Some hospitals will allow you to self-medicate (leave you to take your own medications at the correct times without the intervention of staff) but this is not always the case.
Make sure that you take plenty of each medication with you into hospital, as they might not have ready supplies, and ensure that the dosage on the label is what you have indicated on any medications list you provide. If not, staff can sometimes only be authorised to dispense what is written on the label, which could be incorrect.
It is also a good idea to inform staff of any side-effects medications can cause, particularly any “on-off” fluctuations you experience, so that staff realise that you may need help with certain activities when you are “off’’.
See also Hospital admissions.