Facts about…

Living with Parkinson’s Disease

 

What is Parkinson’s disease?

The NHS defines Parkinson’s disease as a condition in which parts of the brain become progressively damaged over many years. Clinically, Parkinson’s disease is primarily described as a movement disorder, and is characterised by its variety of motor symptoms.

How many people are affected?

Parkinson’s is the second most common neurodegenerative disorder affecting 1-2% of the population aged over 65 years and 3-5% of those aged 85 years and older. Parkinson’s is more common in men than women in age groups 60 years and above.

What Happens to the brain when someone has Parkinson’s?

The symptoms of Parkinson’s appear because certain nerve cells in the brain begin to die. Many of the symptoms are due to a loss of neurons called dopamine. Dopamine is a chemical messenger in your brain. When this decrease, it causes abnormal brain activity triggering the symptoms of Parkinson’s.

 

Is Parkinson’s disease curable?

Parkinson’s and its symptoms cannot be cured. However, the symptoms can be managed, both through therapies and with medication.

Symptoms of Parkinson’s disease include:

• Tremor (involuntary trembling or shaking movements)
• Bradykinesia 
(Slowness of movement)
• Rigidity
• Balance problems, problems with posture (particularly tendency to stoop forwards)
• Sleeping Problems
• Speech difficulty

Eating right with Parkinson’s

Parkinson’s disease medication is more likely to work better when on a nutritious, well balanced diet.

• Foods high in fibre will help with the gut and digestion. This includes vegetables, cooked dried peas and beans, whole-grain foods, bran, cereals, pasta, rice, and fresh fruit in your diet.
• Choose foods low in saturated fat and cholesterol.
• Try to limit sugars.
• Moderate your use of salt.
• Ask your doctor about drinking alcoholic beverages(alcohol may interfere with some of your medications).
• Parkinson’s UK recommends eating less protein during the day and more in the evening if you are taking Levodopa (main drug used to treat Parkinson’s.)
• Other tips for your diet include staying hydrated and eating slowly and more often.

Equipment and Devices:

Eating and drinking

•  Steady Spoon
•  Spoon bowl swivels to keep food stable and level (even when experiencing tremors or weakness.)
• HandSteady Anti-Spill Cup With rotating handle (no spills when drinking)
• Other Specially designed cutlery for tremor, stiffness and rigidity can be found at essentialaids.com

Getting around

• Walking stick
• Walking frame
• Wheelchair

Getting out of bed 

• Bed raiser
• Bedside grab rails
• Mobile hoist A mobile hoist can be used to li you between your bed and wheelchair 

Personal Care

• Raised toilet seat
• Converting bath to a wet room or a shower
• Commodes (if you need the toilet urgently but can’t get up)
• Toilet grab rails

Emergency Device

• Pendant alarms
• Global Positioning System (GPS) trackers

Medication trackers

• Pill organisers with timers

 

Tips: Caring for someone with Parkinson’s 

Everyone with Parkinson’s is different so how you support someone with Parkinson’s will also be unique. Here are a few tips:

• Stay organised – Keep a record of their symptoms, medications, and doctor visits. This will make appointments more efficient and beneficial.
• Research – Gather information on Parkinson’s disease, treatment and care options so you can help better and plan for the future.
• Observe their disease – Share with their doctor symptoms you have observed such as speech issues, mood/anxiety concerns and motor function changes.
• Discuss decisions for the future– Talk about advanced directives, wills and power of attorney.

Support services

You’re not alone. Get the support you need today.

• Helplines and local advisers can help with any questions surrounding the topic of Parkinson’s.

Peer Support Service

• Connects you to a trained volunteer who has experience in Parkinson’s.
• Contact Parkinson’s UK at 0808 800 0303 for local advisers and peer support services in your area.

Local Groups

• Search for support groups tailored to you and in your area at Parkinson’s UK. parkinsons.org.uk/information-and-support/local-groups
• Guildford Parkinson’s Woking Age Group

Further information is available from Mary Brown Parkinson’s local adviser on: 0344 225 3668 or by email adviser8.southeast@parkinsons.org.uk

•   Sutton, Kingston and Epsom Active Parkinson’s People

For further information please contact Proscovia Wagaba, Volunteer Co-ordinator on 0344 225 9851 or by email vc.south4@parkinsons.org.uk

Self-management programs

• Sign up to a Parkinson’s self-management programme at

www.parkinsons.org.uk

Online communities

Here are a few different communities you can join:

• Parkinson’s Disease More Than Motion
• Parkinson’s UK forum
• Parkinson’s foundation forum
• IParkinsons