The Mask of Parkinsons Disease

[SuBee]

For my Aunt..................

No more can her face express her delight
Happy and sad merges, forms a mask of fright
Her eyes are off putting, an expressionless glare
To assume a disinterest, would be so unfair
To choose to avoid her is easier for some
But please interact, cus she IS having fun
Parkinson’s disease has remodelled her face
Underneath it all, she’s still full of grace
She feels happy and sad and pain and relief
She can’t show expression, Parkinson’s is a thief
It took her ability to show her true feeling
Ill health is like that! But I call it stealing.
I will always remember the warmth in her smile
Now replaced with a mask that can seem quite hostile.
But I see so much deeper, her smile IS still there
So don’t be deceived, by the expressionless stare
Inside she is dancing, but she just can’t express
Don’t misread her face and think its distress
Just sit with her ……chat, ask ‘how are you today?’
She can tell you via words, it’s easier to say
‘I’m happy’ or ‘sad’, ‘I’m in pain’ or ‘pain free’
She will welcome the contact, but you won’t sense the glee
Don’t think she dislikes you or looks in distaste
Your judgement is wrong made in intuitive haste
Take time to understand the disease and effect
Parkinson’s needs understanding, empathy and respect

 

[Rod]

My uncle Bill had Parkinsons Sue. Strange that Ive just been trying to trace him Genealogically speaking. He was a lovely man, my mom worried about him constantly and his wife. He used to take himself off and travel about sometimes ending up in Aston all the way from just off the Ladypool Road. He had dreadful Tremors, and seemed not be taking notice most of the time, but I remember just occasionly there would be a hint of a smile on his face and a look in his eye. All this happened around 63/64, your poem has brought memories back for me. TY

 

[Reginald.F.Horton]

Hello Su bee
Having been diagnosed in august that I had Parkinsons disease and just not knowing how it would affect me in the near future ? Well I have had a few falls to date but now that I am on medication
things have improved for me somewhat which I am pleased about.
I hope your aunt is well Su Bee and I thank you for sharing your poem it shows that you are surely a caring person :smitten:

Spiritual Light & Love :angel: :smitten:

Reggie :angel: :angel: :angel: :angel: :angel: :angel: :angel:

 

[jennyann]

It's hard to ad a suitable adjective to your poem Sue. It says so much and teaches too. We
definitely should all make ourselves aware of these diseases that can affect us all, such as Multiple Sclerosis, Parkinson's, Lou Gehrig's, Alzheimer's, etc. Years ago there were no effective drugs to control these diseases in any way and sufferers had to make the most of their situations every day. Thanks for posting this Sue. Reg, you are very brave to say you have Parkinson's and I wish you the best for each and every day.

 

[Beryl M]

Suebee - Your poem expresses a very warm and heartfelt account of your Aunt’s struggle to come to terms with Parkinson’s Disease and Reggie’s too – Thank you

 

[dollyferret]

me and mom struggled for 4 years to keep dad at home,he had parkinsons and alzhiemers,i loved my dad to bits,this was a man who went through(like thousands of others) his call up in ww2 saw him with the pathfinders in the RAF ,but these two terrible afflictions turned him into a complete stranger,from a loving ,kind thoughtful dad ,we never recognised him,it was like he had died and they hadnt taken the body away,we would find him downstairs taking every thing out of the cupboards and putting it all in bin bags,and every thing in the dust bin back in the cupboards,from a fantastic husband he was so nasty to my mom ,it broke her heart as he called herawful names and wanted to know where his wife ,n.ot the *********who was nursing him.we always slept with with one eye and ear open,just waiting for him to start mooching,we both took a nap thru exhaustion ,and he was gone,the police found him trying to walk to raf coningsby(lincs).he got so bad it nearly killed mom with just the physical effort and the immessurable stress,in the end we had to put him in care,but even this wasnt really secure,as he got out of the home and walked to the scott arms in great barr 7 miles away in his pyjamas one afternoon ,it was only the police that stopped him going any further (sign of the times ,no one really cares about someone who was clearly distressed)it was a terrible and undignified end to a really great dad who i miss terrible.the eternal debt i owe him is that i now care for my mom who sacrificed her remaining time trying to care for him at home,she never goes out because of where we live ,but i bundle her in the car and she navigates (not very good ,but she thinks shes doing a grand job)while we search for pubs to photograph,there is no shame in letting them go when you cannot cope ,no one really understands unless you have been there

 

[Frantic]

Didn't know any of that Pete, Sorry about your Dad, he was a good un. This is what happens when friends lose touch with each other. You miss out on SO much.


Subee, very well written. Your empathy, as usual, comes through. I would not expect anything less from you.

 

[SuBee]

Thank you for your responses - and ressurrecting an earlier poem.

Approx 30% of people with Parkinsons Disease can develop an associated dementia - as if the condition itself isnt cruel enough.

Although I understand peoples misconceptions - I struggle with attitudes towards the effects of Parkinsons.

When my Aunt can 'move' - she moves........when she gets 'stuck' she cant. I endlessly explain to people that the levels of chemicals in her brain affects what she can and cannot do - and that its not a choice.

I have said before on other areas of this forum, that the only real way to look after someone is to see them as one of your own and treat them with the respect you would expect your own to be treated with. Sadly, although probably in the minority, this is not always the case. Apart from wondering why on earth these people seek employment in the 'caring' professions, I also hope that one day some of my explainations may help them reflect on their ways

 

[Kate]

Suebee - these diseases are horrible - I have an elderly friend with Parkinsons but thankfully not Alzheimers.  My cousin in USA who was looking forward to her "golden years" with her husband had her hopes dashed.  He developed Alheimers (unbeknown to her, his parents both suffered from it) and he finally burnt down their beautiful 100+ year old home.  He was a smoker and just threw his butt into a bin which he set alight.  She was lucky to get him and her dogs and herself out of the house before it was destroyed.  She had wonderful quilts she had made and other heirlooms - all lost.  Her  beloved husband had to be put in to a "secure ward" because he had become very violent and she had to travel 75km or so each way to visit him.  Each visit was an ordeal because of his aggressive behaviour - he had to be restrained forcibly - and he didn't know who she was.  She lost her husband a few months ago and she was devestated.  Life can be cruel.  There but for the Grace of God go I...