Parkinson awareness week this article offers support, equipment suggestions, advice, links and help

Parkinson’s disease is a disease of the brain and central nervous system due to loss of cells in the brain that produce a substance called dopamine.

Symptoms

Main –

  • Tremors/Shaking
  • Slowness of movement
  • Rigidity/Stiffness

Others-

  • Bladder/bowel problems
  • Eye problems
  • Falls/dizziness
  • Fatigue
  • Freezing
  • Pain
  • Restless leg syndrome
  • Skin/Scalp/Sweating problems
  • Sleep problems
  • Speech problems
  • Swallowing problems

Mental-

  • Anxiety
  • Dementia
  • Depression
  • Hallucinations
  • Memory problems

Facts

  • 1 in every 500 people have Parkinsons – 127,000 in the UK
  • Most people who get Parkinson's are aged 50 or over but younger people can get it too.
  • Everyone's experience of Parkinson's is different
  • There is as yet no cure but plenty of research is being done
  • 46% of people with Parkinson’s suffer depression – this can obviously have a massive effect on their mental state of mind and has led to suicides due to the disease.
  • Over half of sufferers had encountered hostility from people unaware of the condition.

Treatment

  • Parkinson’s is linked to low Dopamine levels in the brain. Drug treatments aim to increase the level of dopamine that reaches the brain and stimulate the parts of the brain where dopamine works.
  • There are lots of drugs that may be more suitable for different people with different needs so it’s important to talk to your GP about what is available and what will work better for you.
  • There can also be side effects to the drugs given to control and help fight Parkinson’s disease. They can wear off or if your body is too used to the drugs, changing them can cause problems. Talk to your GP for advice. Some of the side effects will heighten what you’re trying to control which can be difficult for the patient and for the carer but the positives for taking these drugs outweigh the negatives and not everyone will suffer them.
  • Obsessive and compulsive behaviour – addictions, unusual needs, stubborn behaviour – is a possible side effect of Parkinson drug taking but this behaviour tends to generally effect young men, who live alone, smoke, and who have a family history of addictive behaviour.

DO NOT STOP taking the drugs that have been prescribed to you or your patient YOU MUST SEEK HELP with a specialist or a GP.

Surgery can help but people will most likely still need to take medication.

Leisoning surgery – Damage to select cells in brain and then electrodes are inserted. This can control movement. Deep brain stimulation – Main type of surgery where three leads are inserted into three main parts of brain and then – like a pacemaker – a device will be used to send electrodes to the stems in the brain to help control symptoms.

Watch this link from Andi who has had this operation – http://www.itv.com/goodmorningbritain/health/andi-tries-brain-probe-treatment-for-parkinsons

Other brain surgery but similar variations to the above.

How to help yourself

Diet and medication balance can be a major issue for people who suffer from Parkinson’s. People can lose or gain weight due to not eating the correct foods or having a chemical imbalance between their diet and the tablets they take.

Some people find that food such as protein may interfere with the effects of their levodopa so this medication should be taken 30mins to an hour before eating.

Osteoporosis is a common problem with people who have Parkinson’s due to lack of Vitamin D intake so this should be taken via a vitamin or other supplement daily.

Planning meals in advance and ensuring time to shop for the ingredients is vital to ensure you are eating correctly. This includes how long you can cook for before becoming unwell or too tired.

Special equipment (see below) such as two handled cups or heat containing plates and weighted cutlery, all can help when you eat and will give you the time and help you need to make sure you take in as much nutrients as you can.

If you have trouble cutting and eating or chewing then try a more varied diet of soups, yoghurts and blended foods.

Exercising for anyone is great and this includes people with Parkinson’s as it reduces stiff joints and muscles, helps stop anxiety and depression and keeps you all round healthy! But it also does something that no other treatment has yet been able to do as exercise protects the dopamine-producing nerve cells that are lost in Parkinson's, helping them work better and survive for longer and this could potentially slow down the progression of Parkinson's.

Therapies such as Reflexology, Reiki and massages could be useful especially in relaxing you.

Living with Parkinson’s will have an effect on many aspects of your life for example if you drive you’ll need to tell the DVLA which might worry you but it doesn’t mean you’ll be stopped from driving all together. Try the following link –

https://www.gov.uk/parkinsons-disease-and-driving

Working with Parkinson’s is up to yourself and depends on your condition. The Equality Act (2010) states that you don’t have to tell your employer that you have Parkinson's, but again it’s up to you to access how dangerous it would be to yourself and your fellow workmates if you didn’t tell your boss. There is help out there such as benefits and other advice when it does come to you leaving work http://www.parkinsons.org.uk/content/welfare-benefits-and-grants-people-parkinsons

Obviously your relationships will be affected and certain aspects might change, things like your life and confidence will change due to feelings and bodily changes. If you have children or grandchildren you might not have the energy all the time to play or join in activities and you might be concerned by how they are dealing with the changes to your health.

People with Parkinson’s have reported that it brings their families closer together and when they do have the energy, they put their all into spending time with those they love.

If you are in a relationship then it’s important to remember that lots of people go through ups and downs with feelings and love no matter their condition. You’re still you, just you with a condition and it really depends on how your symptoms effect you personally as to how much it will effect overall you relationship. Try to stay as independent as possible, talk to your partner, go to counselling, do things together but also remain having your own hobbies for as long as you can too.

www.familylives.org.uk

http://www.carersuk.org/

Equipment for Parkinson’s

    • Heavy cutlery that is bendable
    • Grab bars
    • Wheelchair
    • Bath board or seat
    • Raised toilet seat
    • Mattress protector
    • Chair raisers
    • Motor control utensils – can opener
    • Tap turners
    • Electric chairs or beds
    • Weighted pen grips
    • Pill organisers
    • Two handled cups
    • Good grips utensils
    • Shower chair
    • Dignity cups/two handled feeder mugs

 

Try our website http://www.abilityaware.com/ for the above equipment or ring one of our shops for advice.

Useful websites

http://www.parkinsons.org.uk/?gclid=COzF1PzPhsMCFW3MtAodcW0A_w

http://www.parkinson.org/

http://www.cureparkinsons.org.uk/

http://www.ageuk.org.uk/health-wellbeing/conditions-illnesses/parkinsons-disease/

Danielle Bessant – Marketing@abilityaware

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