I have been asked many times to write this blog post and I kept putting it off. It is not easy to write but if it helps anybody then that makes me very happy.
The tools and equipment featured are all from jaycotts and I will give you the links as we go along. Please note that the products featured are suitable for use no matter what your disability, be it arthritis or poor eyesight.
Parkinson's is not what I want for myself or anybody else for that matter,quite frankly it stinks. One day I may feel well (ish) there is always an ish! Other days I cannot even get out of bed.
Currently around 127,000 people in the UK are living with Parkinson’s, an incurable, degenerative neurological condition which leaves people struggling to walk, talk and sleep
It's made harder by the fact that I live alone, people with disabilities become somehow undateable, I mean it's not the best chat up line in the world is it? " Hi, I'm Angela, I suffer from Parkinson's, I have chronic fatigue, I drop things constantly, I can't always find the word I want and I might fall over and appear drunk" come on! Yes I know I am positive and I am a fighter but sometimes I don't want to be, you know? I want to be " normal" I don't want to have to collect two carrier bags of medication every month and spend two hours every week sorting it out.
And I am really not complaining because I am grateful, but I would love to be able to earn my own money and not be means tested. Hey I'd love new carpets! Correction I NEED new carpets but I don't have that sort of money! I cannot just go out on a whim if I am feeling low or buy myself a treat - like those carpets, or anything really.
I lost a 30K + salary when I was diagnosed, now I have to prove to people that I really do qualify for the little I get, just like millions of others.
I didn't want to give up work. Early " retirement" was not an option. It was tough giving up a career I loved.
Most people go out for a coffee occasionally right? Well for me - unless I pay by card, contactless is so brilliant! I struggle to get the money out of my purse, then - have you noticed - you are given receipt followed by a £5 note followed by loose change..err? What am I supposed to do with it? I just stare at it and shove it in my pocket. Then there's the impossible task of trying to carry an overfilled cup to a vacant seat - if I can find one.... Imagine that scene??? Yes, I could ask for help, but honestly, would you?
It is very frustrating when I cannot do something like chop vegetables - I have to buy them ready chopped - more expense. I can't eat a lot of the foods I used to love because I now have allergies to certain proteins in various foods. Hey, I don't even have the energy to cook a huge meal, even if I could manage to eat it! Stir fries are my salvation AND healthy - all that veg!
Don't think I am moaning, I'm not this is reality for me and thousands like me, and I am telling you how it is. You need to know.
Not only do we struggle with day to day life, try managing on what the benefits system pays out! Our daily living expenses are much higher than able bodied people and that's a fact.
This report is by another Parkinson's sufferer
Parkinson’s can creep into so many aspects of your life. For the first time,research has exposed the full financial impact of Parkinson’s, and it’s shocking that people affected by the condition are being hit by such devastating losses – especially at a time when families are already feeling the strain.” Steve Ford, Chief Executive, Parkinson’s UK
Because Parkinson’s is progressive, new symptoms can present at any time. I started to experience problems with swallowing, and combined with medication, this caused dramatic weight loss. I had to replace all my clothes as well as buy protein powder and high-calorie drinks to help me get the nutrients and essentially daily calories I need. I also pay for visual aids to help with the cognitive problems I experience due to the condition, and I’m determined to keep as active as I can, but again that leads to me paying out for more equipment. All the things I pay for help me to live well with Parkinson’s for longer – so it isn’t a choice to buy them or not, they are all essential for me. It may seem at times ideal to be retired so young but people forget why, they don’t know from a post on Facebook that I had absolutely no sleep last night or that I can’t even complete the alphabet some days.
A quote from another Parkinsons sufferer says “Parkinson’s can creep into so many aspects of your life, and with that comes extra costs that can really add up. That’s why my husband refers to it as “The Burglar” it’s taken part of his wife and continues to take. We just try to make the best of it.”
Increased costs Households affected by Parkinson’s lose out on more than £16,000 each year due to a combination of reduced income and increased costs, a report looking into the financial impact of the condition for the first time reveals a shocking impact on sufferers, all this on top of having to come to terms with a diagnosis of something totally life changing and incurable
Research published by Sheffield Hallam University and Parkinson’s UK shows that a household where a person is living with the condition loses around £319 per week on average – 60 per cent more than previously thought. “I applied for benefits, but the process took so long that for nearly a year we had hardly any money coming in.” says Anna Cunningham
Half of those diagnosed with Parkinson’s, and one third of family members, have reduced their working hours, looked for more flexible roles or given up work entirely. The Cost of Parkinson’s report shows that overall, households affected by the condition experience a loss of income averaging £10,731 per year, as a result of reduced working hours, family members providing unpaid care without financial support, and the loss of state benefits and pensions. This is in addition to mounting health and social care costs, which add up to an average of £5,851 per household across the year and include assistance for daily living, such as transport and personal care, energy costs, healthcare related equipment and travel, and adaptations to the home
Early retirement? It's a joke!
Read the full report on this link The true cost of Parkinson's
|Myself and my Brother|
That's not a pretty picture is it. Unfortunately it's reality for me and people like me.
If somebody you know who has a chronic disability like Parkinson's and they laugh and say who me? Yes, of course I am fine! Why shouldn't I be? Don't take it at face value because often they are putting a brave face on. It's loss of independence which hits hard you see. We don't want people to know we are feeling low or that we are exhausted because we were in so much pain last night that we hardly slept a wink. Yes there is pain, lots of it .It becomes normal to be in constant pain.
So, those of you who read my blog wont know , because Parkinson's can be a hidden disease, that I have lost weight because I can't eat, that it takes me three hours to get up in the morning and that I can no longer write my own name
|This is me with my father and brothers.|
There is no set pattern as to how long Parkinson's takes to progress or the age it starts or indeed the symptoms as It varies from person to person. I have had young onset Parkinson's for around 20 years and at the moment there are signs that it is deteriorating. This is normal as it is degenerative and incurable.
The disease is very complex and it affects the whole body.