An article I’ve written to raise awareness of Parkinson’s. Feel free to share outside this group.
So you think you know about Parkinson’s Disease? It’s an illness that affects older people, mainly men, and causes a tremor, right? If that’s the extent of your knowledge, you’re not alone. That is what the majority of people would say about Parkinson’s Disease but it’s an antiquated and truncated view.
It’s estimated that 1 in every 500 people will currently have Parkinson’s Disease. In 2020 there were an estimated 145,000 people living with Parkinson’s Disease in the UK. This is expected to rise to 172,000 by 2030. The age of onset of Parkinson’s disease is normally over 50 years old, with the risk of developing it increasing with age. However, it’s now estimated that one in 20 people experience their first symptoms under 40 years of age. With many people delaying parenthood, this means that those diagnosed with Parkinson’s Disease may now be of working age and/or have young children. Parkinson’s Disease is the second most common neurodegenerative disorder of aging and unfortunately it is becoming an increasingly relevant disease for the general population and one for which there is currently no cure.
For years Parkinson’s Disease has been thought to impact men more than women, but this is only by a small percentage. Increasingly, women are being diagnosed and many of them are mothers of young families.
As for the symptoms, this is an area where many people have very little knowledge and understanding. For some sufferers, tremor is an obvious symptom leading to difficulty carrying out basic day to day activities, such as drinking a cup of tea. For others, there is no visible tremor, although they can experience a constant feeling of internal tremor, which can be extremely disconcerting.
The difficulty with Parkinson’s is that the range of symptoms any person experiences can vary dramatically. They can include:
Visible external tremor, often starting in one hand or arm and spreading around the body
Invisible internal tremor
Stiffness of muscles and constant debilitating tension in the muscles
Painful muscles and muscle d CD ramps
Inability to smile
Difficulty rotating to reach for things or turning over in bed
Imbalance and dizziness leading to falls and injuries
Unpredictable freezing in the middle of movement and being stuck like a statue - imagine that in the middle of the supermarket!
Stooped posture
Inability to make big movements - walking can increasingly become a small shuffling movement
Slow movements making it difficult to get around
Loss of dexterity resulting in difficulty performing routine activities such as fastening buttons or bras
Wasting away of muscles
Very awkward twitchy movements which draw people’s attention
And those are just the motor symptoms related to movement!
Add to these (in no particular order):
Difficulty sleeping and full blown insomnia
Severe depression and anxiety as a symptom of Parkinson’s Disease
Depression and anxiety as a result of having a debilitating, progressive disease and the way it impacts your life
Speech problems, especially diminishing volume of voice, so sufferers find it increasingly difficult to be heard and understood
Difficulty swallowing, resulting in embarrassing drooling, struggling to eat solid foods and/or dehydration and malnutrition
Weak bladder control and resulting incontinence
Severe constipation
Excessive sweating
Nerve pain causing sensations of burning, coldness or numbness
Fainting caused by sudden drops in blood pressure
Inability to obtain or sustain an erection in men
Difficulty becoming sexually aroused or achieving an orgasm in women
Loss of sense of smell
Debilitating fatigue
Memory loss or fogginess
In some cases, dementia
All in all, not a disease you want to develop, especially since there is no cure and attempts to slow its progression are limited.
Yet, despite all this, I am a 52 year old woman with two teenage sons who absolutely loves life and feels that my diagnosis of Parkinson’s Disease nearly six years ago has in some ways been a blessing. Initially, my husband and I were devastated by my diagnosis; we had no words to describe our shock or to support one another; we had no clue how to break the news to our vibrant, fun-loving 7 and 10 year old boys; I was ashamed I had brought this trauma into our family. But we have been lucky. My physical symptoms are progressing slowly and I have found ways of coping. I’m especially focussed on non-medical ways of helping myself through exercise, diet, hydration, sleep, massage and physio (DLS Physiotherapy) dlsphysiotherapy.com), counselling (individual and couple’s through The Grove Counselling and Psychotherapy Practice, thegrovetherapy.co.uk) and lowering stress. On a weekly basis, I box with Box Positive (boxpositive.com), do a general neuro exercise class with Eat, Move, Be Happy (wew.eatmovebehappy.com), do yoga, play tennis, and strenuously walk our dog up the local moors.
We have also been blessed with a really supportive family and friends, who look out for us and pick me up when I am down.
Parkinson’s Disease has made me look at life differently - I enjoy every day to the full and don’t save the best until later because you never know what’s round the corner; I savour the very small things - blue skies, birds singing, spring flowers and the smile of a stranger; I try to remember to be kind to myself and to others because everyone is dealing with something.