Monday, 7 April 2014

48. Parkinson's Awareness Week 2014- Carers In Control

Hello everyone! This week is Parkinson's Awareness Week, the largest annual event ran by the charity, Parkinson's UK. I wanted to share my story with you because this year's campaign is "in control". Parkinson's itself may be incurable at present but that does not mean it can take away the control you have over your life whether you suffer with the condition or care for someone who does. 

Parkinson's disease is a cause close to my heart, I was just 9 years old when the symptoms first appeared in my Mum. Her left arm began to shake and she became increasingly frustrated that she could no longer cook and picking me up from school became a struggle. One Friday evening in May 2004, she couldn't get out of the bath tub so I helped pull her up and later that evening, she was admitted to hospital. From that night, it took almost three years until she was diagnosed in April 2007 as the doctors were unsure whether she had had a stroke that night as her left side became so badly affected. When she was diagnosed, things did not change much. We received no information about the condition from either the GP or the consultant. 

Although my Mum was responding well to several different medications such as Stalevo (dopamine) and Neupro Rotigotine patches, things took a dramatic turn for the worse in 2009. Mum had her daily dosage of rotigotine patches increased from 6 mg to 8 mg in October 2009 and started experiencing hallucinations and was hospitalised in November 2009 until October 2010. The most shocking thing is that we had no idea that the medication could cause such side effects. While my Mum was in hospital, I began to do a lot of reading around the area in between visiting Mum and studying for my GCSEs when I stumbled upon the Parkinson's UK website. For the first time, I realised we weren't alone. My Mum wasn't suffering from a rare incurable illness making her some sort of outcast. There was an army of people out there actively raising awareness and fundraising to battle this condition. This inspired me to become one of them and spread the word!

By becoming a Parkinson's UK member, I receive quarterly newsletters full of advice and the latest news on Parkinson's research all for just £4 a year (£15 for overseas members). Parkinson's UK produce a vast amount of literature that is free to order in the post or to download. The topics range from gene therapy and retiring abroad to driving and pregnancy. Parkinson's UK actively campaign to ensure as many patients as possible have access to a specialist Parkinson's nurse and that cuts to welfare benefits do not affect Parkinson's sufferers unable to work. 

In April 2012, Mum started to show similar symptoms to 2009 with hallucinations and exceptionally bad mobility and I was terrified that she had relapsed despite not taking rotigotine for almost 3 years. I rang the Parkinson's UK helpline in complete despair when a specialist Parkinson's nurse spoke to me and reassured me that it was likely Mum was suffering with not psychosis but a urinary tract infection which is common in Parkinson's patients and is prevalent during periods of hot weather such as those we experienced around Easter 2012. The halluncinations were probably due to delirium and not the medication. The nurse was right and after a six week stint in hospital with a long course of antibiotics, Mum amazingly has been at home without a single night in hospital for almost two years so things can and will change for the better. Having Parkinson's does not mean the be all and end all and sufferers go on to live for decades in the majority of cases with a reasonable quality of living assisted by treatment.

No matter how bad the dyskinesia, stiffness and pain (amongst all of the other symptoms) get, just remember that you are not alone. I have left all of the contact details for Parkinson's UK at the end of this post . If you are a carer then tell someone, this is particularly targeted at young carers (under 18s). Do not suffer in silence. It is inevitable that your physical and emotional health and grades will be affected and the last thing you need is teachers on your case. If you don't want to tell your teacher or friends then there's always someone like at an after school club, a neighbour, or a leader at a youth club. Tell your favourite teacher like I did. You do not have to broadcast it to the entire school if you're not comfortable in doing so. I didn't. The only people I told were my amazing best friend, Sammia and my favourite teacher, Mrs Hickey. When I was younger, I often got quite upset because I thought why is it my Mum? As an only child, I've always been close to my Mum so when we could no longer go shopping together or cook and garden together because of her condition, I didn't know what to do and how to explain it to a class of 30 odd teenage girls who can be overwhelming at the best of times. 

The person who you are caring for will probably have a social worker (if they don't then contact your GP or local council) and they will refer you to a a special social worker for young people who will tell you about local young carer's groups where you can meet and make friends with people in a similar position to you! Every cloud has a silver lining and you might end up making a whole bunch of great friends at the carers groups. You will also be entitled to a young carer's grant and I know that no amount of money is a substitute for health but you can use that money to treat yourself because you deserve it. Caring is as demanding as a full time job and if you're still at school then you are amazing for juggling two magnificent tasks. Similarly, Parkinson's UK also has local groups. Respite care is also available in some cases and that is when the person you care for is taken to a special care centre for a week or so in order to give you a break. Again, contact your local council, social worker and/or GP to find out more about it. Just because you are a carer does not mean you should not be cared for. You need to look after yourself because otherwise who will look after the person who you look after?
Parkinson's UK has a special section on their website for young carers:

If we can eradicate conditions like Smallpox, why should Parkinson's not follow suit? Text PARK14 £3 to 70070 to donate £3. 

To find out more, here are the Parkinson's UK contact details :
Helpline: 0808 800 0303 

Thank you for reading. Until next time, take care.
Mancunian Sheep x