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Saturday, 21 April 2018

What it is like living with Parkinson's

People continue to be surprised that I have Parkinson's, I have written about this before ,and I hope that this new post will be useful if you either have Parkinson's or you know someone with Parkinson's

Parkinson's does not define me. It is not who I am. I love my life, I live it to the full and I am bouncing with health. 
This is purely to answer people's questions an how you can help somebody newly diagnosed

I would not have life any other way. 

First of all, what is it?

I have young onset Parkinson's YOPD which is different to the  Parkinson's we normally see in older people who shake a lot.

It is a chronic, progressive neuro-logical disorder affecting movement, speech, body language, handwriting and swallowing. Approximately 120,000 people in the UK have Parkinson’s disease and around 10,000 people will be diagnosed each year.

Although the majority of those diagnosed will be aged over 60 years, one in seven will be under 50 years and one in 20 will be less than 40 years. The term ‘young-onset Parkinson’s disease’ is used to describe the development of Parkinson’s disease symptoms in individuals between the ages of 21 and 40 years.

The lack of awareness that younger people can also develop Parkinson’s disease has sometimes meant that we can experience difficulties obtaining an accurate diagnosis or finding appropriate information and support.

We can feel isolated and alone.

The loss of  dopamine results in loss of a lot of our communication skills, and has a marked effect on all aspects of my life and relationships with other people.

Difficulties with communication, loss of self-esteem and feelings of embarrassment (because of eating difficulties, walking, writing etc) makes people like me withdraw from social life, which leads to isolation and lonliness.

 Fatigue, anxiety and stress, common features of Parkinson’s disease , can also be contributing factors to feelings of depression and sadness.

Our lives have changed dramatically and not for the better.

We rely on drugs to treat the condition which must be meticulously timed. Lack of awareness about side effects and the on-off syndrome causes misunderstanding too. We can often complete a task when "on" - when medication is working -  but unable to perform the same task when "off" - medication not working or worn off.
This makes us appear difficult.

 Lack of facial expression or freezing of the facial muscles can make us appear sad or dissinterested and leads to losing friends believe me!
Having YOPD is doubly difficult because all services and support are geared towards the elderly with little for younger people.

Do please take time now to watch my YouTube video 
If you receive my blog posts by email you need to either visit my blog or go to this link     YouTube video   to find it.

If you watched the video PLEASE do! And please share it, you will know that I had a fall last week, which is common. I broke my lovely overlocker , which is now temporarily held together with sticky tape. Thank you to Brother who are repairing it for me

I also damaged my much loved Horn sewing cabinet, so thanks to Horn who are repairing it for me.

The far reaching results of random acts of kindness like these cannot be stressed. We none of us know what is around the corner, so whoever you are and whatever you are doing please stop right now  and make that phone call, send that card before it's too late. We all have the power within us to make another person happy right now.

If you have just been diagnosed or are close to somebody who has, there is life outside Parkinson's, it's not the same life, but it's a good life still.

Here is another YouTube video explaining what it is like after diagnosis 

Many blessings