What is it like to be a young woman with Parkinsons?
With thanks to Jaycott.co.uk.
Please note that these tools are suitable for most disabilities, not just Parkinsons
Update 17 May 2020
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.
Well, Christmas is here and it's a nightmare! The shops are busy, my town centre is being " updated" and half the parking is gone so I can't shop here until the roads reopen, it means a 15 mile drive to the next big town.
And the crowds, shopping is stressful enough at the best of times but add to that busy stores and car parks, queuing it becomes an impossibility.
Food and medication have to be carefully timed, I mean meticulously timed, it's no good eating or taking meds an hour out of sync, that just makes my symptoms worse. Yes I can enjoy a drink, but not too much because of the medication.
I haven't sent Christmas cards because I can't write them. Life is so very different. If you know anybody with Parkinson's do look for ways to make things easier for them. If they are eating with you ask what time would be best for them and they will give you a window. Food and medication often have to be taken an hour or so apart, and some foods cannot be eaten at all. A discreet conversation would prevent embarrassing moments on the day. Cut your guests turkey very thinly and add lots of gravy as swallowing is affected by the disease. Provide a steak knife too, they do help.
I might make light of my condition, but it isn't easy to live with.
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, 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.”
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!
|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.
It is a neurological disease caused by the part of the brain which produces dopamine dying. Dopamine controls motor and non motor functions and so the effect of the lack of this chemical causes a lot of changes to your body and how it works.
At the beginning it affects one side or the body, the right in my case, but eventually affects both sides. I have a tremor which worsens when I am under stress or tired, or even when somebody notices it. It affects movement which becomes slower and often my face freezes giving me a blank expression. That makes people think I am disinterested and can cause arguments! I find it very difficult to swallow and my coordination is poor. Walking is also difficult, there is a specific Parkinson's gait which you may have noticed, and I am in constant pain in my legs and hands.my digestion is also very poor. I get a lot if muscle cramps which are extremely painful and often the muscles in my feet and hands will contract making the fingers and toes bend backwards.
Non-motor symptoms include anxiety, depression, insomnia and many more. It's unpleasant isn't it.
|I have Young onset Parkinson's|
For more information go to Parkinson's uk
|My mother Joan who died recently following complications from her Parkinson's|
This is something I made earlier, my son Matthew who is a hospital doctor At the moment he has chosen one of the most difficult departments there is and spends his shifts - long shifts I might add - caring for the most seriously ill in critical care..I am incredibly proud of him, hmm, he is sat in my "electric" chair doing my crossword!
This is what I mean about lack of coordination and poor hand control. This was probably the very last time I attempted to bake a cake. It takes far too long to tidy up afterwards.
Now, let me show you some of the tools I now use to help me to continue with my sewing. It is vital when diagnosed with something totally life changing such as Parkinson's that you continue to do the things that you love. I understand that it takes time to come to terms with a diagnosis, and that you need time to mourn and cry, but it is just as important for you to realise that life goes on despite it. Sure you will need to think of new ways of doing things but it is not impossible, besides I like a challenge!
Jaycotts understand Parkinson's and are disability aware so you can ask them any questions you like without embarrassment.
Firstly my seeing machines and overlocker are from Jaycotts.co.uk too so take a look at their special offers.Machines and accessories Don't be afraid to ask what the current deals are.
Let me show you the tools that I use to make sure that I do not miss out on the thing I love doing most - sewing. I will include a link to each product so that you do not struggle to find it in the web site.
|A collection of gadget's|
These wonder clips have to be my favourite. They totally do away with using pins. I use them instead instead of pinning and they can be whipped off your seam quickly whilst sewing, they are easy to find if you drop them too. I really cannot praise these enough. they come in different sizes too. Wonder clips
When cutting out you could use patterns weights. Jaycotts sell them - or make your own. I use my collection of piggy banks.
If you still want to stick with pins then I recommend a magnetic pin cushion, it makes less work if you accidentally knock it over. A magnet for collecting pins off the floor is a must too. Magnetic pin cushion. And Horseshoe magnet By the way glass headed pins are much easier to use than ordinary straight pins.
It makes easy work of using a ruler or template or indeed a lot of other things which you need to hold in place. Ruler handle
All of these tools are soft grip and are by Prym. They are kind on the hands.
Pictured above are the seam ripper, point turner and thread snippers and can all be found in this link. Prym Sewing tools
I do find them easy to hold being ergonomically designed they fit easily in the hand.
A magnifying glass is essential in my opinion. The one on the web site is now red instead of this clear one, they sit in your chest when in use and you will wonder what you did without one.useful for needle threading, sewing, reading patterns and a million other uses. Prym magnifying glass
Something you may not have considered is this attachment for your sewing machine.It is a knee lifter and you push it to one side with your knee and it lifts the presser foot so that your hands do not have to move to a different position. I love it. it is dependent on your Sewing table being at the right height but now that I have my Horn cabinet and hobby chair I am able to use it constantly as it is just at the right height for me. They do come as standard with a lot of machines, for more information contact Jaycotts on 01244 394099 and they will be able to tell you it there is one suitable for your machine.
Just remember that if you are using it with your Horn Sewing cabinet to remove it before putting your machine away.
The next item I use a lot of is this wonder tape. It sticks seams together and zips in place, without them moving whilst you sew them. It is a brilliant product. If you find pinning zips and facings and so on in place difficult then this is the product for you. There are also temporary spray on adhesives which do have a great use,but for me wonder tape is the most wonderfully useful product -ever. This is it, Prym Wonder tape it is basically a thin double sided tape for fabric. And yes It does disappear in washing.
I just had to mention my Horn Sewing cabinet and matching chair , see the range here, Horn Sewing furniture
This has revolutionised my sewing as everything is in one place and I just swivel my chair from sewing machine to overlooker and back again. There is a full review on this blog so do take a closer look.Horn NOVA review
I was interested when I was looking through patterns to see that pattern houses such as simplicity are realising that there are people who use wheelchairs and walking frames and I was really impressed with the patterns and the foresight to produce them. This pattern for example is for some extremely useful and attractive accessories for wheelchairs and walkers. Simplicity pattern I think it is great to see patterns like this, so it you know anybody who uses either of them, do make them something as a gift -it will certainly be appreciated.
There is another pattern too which I think is very pretty for a lady, Walker accessories
It is a hard fact to face but adults often need clothing protectors. We don't want to discuss it do we? However it is fact. It you have such a guest coming for a meal over Christmas then why not make everybody a festive garment to wear? That alleviates any embarrassment and actually adds a touch of fun to the occasion. You can bling them up as much as you like! Clothing protectors
If you have a disability you will understand the need to be able to carry on doing the things you love. With one or two adaptions it is possible to carry on.
It is not a subject we like talking about is it. Mostly I do not look disabled so people are surprised when I cannot get out of bed for a couple of days or wonder why I cannot walk very far. If my face freezes and becomes blank they think I am disinterested in them.
It can be a lonely place, so do ask questions, take an interest, ask now you can help. Just because we never ask for help does not mean we do not need it!
I hope that you find something of use in this blog post.
I want to thank the following for their unending support and encouragement
The fabulous Jaycott family at Jaycotts.co.uk who go to endless amounts of time, trouble and expense for me.Thank you.
To Minerva crafts for endless supplies of fabric, for supporting me, encouraging me and believing in me.Thank you
Lastly to my son Matthew for being utterly brilliant.
Thanks everybody, please say something really nice to another person today - you don't know what they are going through inside.