As usual, am woken at 5.00 a.m. by an earthmoving experience...courtesy of my husband launching himself into our bed after having a pee. And, as usual, I pretend to be asleep. I swear I could sleep through an earthquake. Am wide awake by this point, and the days of the week run riot through my head. Is it Friday, today...Sunday – maybe Thursday? In the end I plump for Saturday – now we’re retired they’re all a bit the same. Except, of course, Monday which is housework day, Wednesday which is washing towel day, and Thursday, clean sheets day. I like Saturdays, and I drift back to sleep looking forward to doing battle with the Saturday Prize Crossword...the highlight of my week!
At seven-thirty, husband is still asleep. I creep to the bathroom and pray he’s had a good night. Parkinson’s gives him ‘restless leg’ syndrome and if he’s had one of ‘those’ nights he won’t be up to much today. He’s had a good night, he tells me, when I wake him after walking into the chair by the door. He calls me ‘Calamity Jane’ and he’s not far wrong. Wasn’t it only the other afternoon I got bitten by a snake on my foot, whilst gardening? Two enormous blood-free puncture wounds which hurt like nothing else and then itched until I wanted to tear my foot off!! Anyway, enough of the other day, it is today this is supposed to be about.
After breakfast, we tackle the crossword together, and then he goes into his beloved garden to do battle with our hedge. He is ‘laying’ it he tells me; lucky hedge, I think to myself. And oh, forgot to say it is a hawthorn hedge and very, very prickly, so needs must, he dons his waxed raincoat over his shorts, his wellie boots, a baseball cap (white, and sweat-stained...YUK!) and a pair of clear, Perspex goggles, ending up looking like a cross between Biggles and I’m not quite sure who else. I potter in the kitchen preparing vegetables for dinner...ones he’s grown in his veggie patch...at this time of the year, at any rate. Out of the kitchen window I catch a glimpse of him halfway up the field. Good, I think to myself, he’s having a good day, but bet anything you like he’ll be ‘off’ by the time he comes in gasping for a coffee. By ‘off’ I mean when he suddenly becomes almost zombie-like and can hardly move or speak. This usually happens if he’s forgotten to take his pills (which he takes about every two hours), but sometimes it could be if he’s had too much protein in his diet, and sometimes, for no reason at all.
He’s not ‘off’ as it so happens so we drink our coffee and watch the birds and squirrels. Usually this is as exciting as it gets, except today we get a frantic telephone call from our seventeen year old granddaughter asking if I have any feathers. ‘Feathers?’ I ask. ‘Yes – feathers’ she replies. ‘I seem to remember you’ve got some in a vase on your landing, Grandma’. I tell her, no she certainly can’t have those – they’re pheasant ones and cost me about five quid each (I have a thing for feathers, you see...and so, obviously does my granddaughter. ‘What do you want them for?’ I ask. ‘A fancy-dress party. I’m going as an Indian squaw’.
To cut a long story short, I managed to drum up some feathers – various, that I had collected over the years from the garden and later, when she came to collect them, she left, more than satisfied with a crow’s , two pigeon’s and one that we couldn’t identify...mind you, she knows as much about birds as my husband does, who often sees a sparrow masquerading as a blackbird – but it’s usually because he doesn’t, and won’t wear his spectacles. If you knew, Ashley, my granddaughter, you would have learned never to expect anything back you lend her...not that I want these particular items back, you understand...only a pair of earrings I lent her for an art project, of all things, two years ago now. She still has them...squirreled away in her jewellery box. Only trouble is, one’s broken and I haven’t got the heart to mention it (nor ever will, having discovered them a while back whilst attempting to make her room look less like the aftermath of an atomic bomb for when she got home from holiday with her mum and dad). It’s now G & T time...addicted as I am to this nightly ritual. I sit and look out at the garden and think myself lucky it’s been a good day. We just take them as they come now. If our late daughter taught us anything at all, it was this. One day at a time. After that we shall have dinner and then watch TV. We’re always late to bed...round about midnight, when I quite expect my husband will again ‘make the earth move’ for me.
Comments
Cavalcaderl | August 13, 2011 - 21:12
new Silver-Spun-Sand
Really enjoyed all this.
Good one take on for the (IP)
This week to.
Parkinson's that is difficult must be.
The snake that bit you. Your up very early!
Wow! I'd be worn out at that hour. Like the grand-daughter borrowing feather's, and earrings.Shame one is broken.
Hope he makes the earth move for you. Must be knocked
out like a light, with G&T. Phew!
julie xx
skinner_jennifer | August 13, 2011 - 22:15
Wonderful piece of writing Tina, very much enjoyed
reading about your day. It's wonderful to be retired,
and can identify with many of your feelings.
Thankyou for the read.
Jenny.
Silver Spun Sand | August 13, 2011 - 22:35
Thanks, Julie.
'Knocked out like a light'... I like that;-)
Tina xx
Silver Spun Sand | August 13, 2011 - 22:37
It sure is wonderful being 'retired', Jenny. I would certainly recommend it;-)
And thank you for reading.
Tina
Highhat | August 14, 2011 - 08:43
Hi Tina- thank you for sharing this. It sure is nice to take one day at a time. I know all about it. Your granddaughter must live close by- that must be nice. What a pain with your hubbies Parkinson's and having to take care of it all the time. I think you must live in a beautiful spot. Sounds like it with a garden and a field and your hill!
I really enjoyed reading this snippet of your life.
(I can just see the baseball cap- ha ha)
;)Pia
maggyvaneijk | August 14, 2011 - 10:39
This piece truly has it all, I thoroughly enjoyed reading it and I loved your compassionate tone of voice with snippets of your lovely humor.
Silver Spun Sand | August 14, 2011 - 13:28
I do hope you can't see that wretched cap, Pia...Mind you, I have since put in the washing-machine:-) Yes, his Parkinson's was quite a blow, as he was only just turned fifty when it was diagnosed. Trouble is with Parkinson's is that the longer one takes the pills, which one has to, the less effective they become. We both pray for a miracle, each day, and I'm sure it will come...one of these days:-)
So pleased you enjoyed reading this, Pia;-) And many thanks for those lovely words of yours.
Tina;-)
Silver Spun Sand | August 14, 2011 - 13:29
Many thanks to you, maggy. I didn't think anyone would bother reading it, so I am really chuffed;-)
Tina
seashore | August 14, 2011 - 13:29
Very YOU (if that makes sense - as why would it be anything else??). I think I mean it flowed in your natural style and I really enjoyed reading it, Tina.
Silver Spun Sand | August 14, 2011 - 13:32
I think I know exactly what you mean, Coral. Funny, isn't it, how we all develop our own style after a time. Yours is unmistakable too;-)
So pleased you enjoyed it. It means a lot;-)
Tina
Cavalcaderl | August 14, 2011 - 18:54
new Silver-Spun-Sand
Well deserved cherry!
Just seen course we love, reading them all
Well fifty is young parkinsons.
My two just forty re; shock both caused
bitten by mosquitoes caused it, from holiday
country they went, both within a year1 But brave,
daughter redundant and other's xmas years there. So he only one working. But all them got good re-dundency pay out. Thank goodness.
So I pray for your's and you pray for mine,they are
bot in re-mission, but inject everyday shame!
Great day exciting poeple, things I did. Mind at bowls.yuk! Oh! have you heard of a Hoopoe bird picture in paper to-day, got a comb at the top, check feathers. Odd looking.
julie x
Parson Thru | August 15, 2011 - 07:27
Lovely and real. Enjoyed this Tina. Well worth catching the later train into work for. Hope your other half is having a good day. Very sorry about your daughter.
Kev
Silver Spun Sand | August 15, 2011 - 08:13
Kev - I appreciate these words of yours, so very much and I hope your journey to work was a peaceful one;-)
Thank you too for your thoughts on my daughter. She was quite some remarkable lady, and if you're at all interested I posted a piece called 'Fireworks in the Snow', in August, 2008, which tells her story.
Have a good week, Kev;-)
Tina
RachelPatricia | August 16, 2011 - 11:43
This is just wonderful, Tina. I can only echo all that has been said here and thank you for such a beautiful read - you have a very special way with words that never fails to amaze and captivate me and I loved stepping into your world for a moment whilst I read this, thank you very much :)
Much love and best wishes to you and yours,
Rachel xx
Silver Spun Sand | August 16, 2011 - 11:57
Thank you for reading, and for your good wishes, Rachel, which I shall pass one;-)
Tina xx
Bernard Shaw | May 10, 2012 - 18:00
Parkinson illness for the last twenty six years. Bern
My Life.
I see my future I see my past,
Nothing is as it was it cannot last.
Ageing bones tired worn out flesh,
I am trapped in a finely spun mesh.
Shaky old hands that do not obey,
A voice that is weak; Do you hear what I say?
Tripling steps that want to run,
Going for a walk is no more fun.
A mouth that dribbles, No control,
Parkinson plays an ever-greater role.
Waiting for my tablets to help me along.
I am now a weakling no more the strong.
A "Jack Of All Trades," was once my boast,
Now I cannot even make myself some toast.
He has lost his will to fight,
I can hear you say it, It is not right.
I will fight until my last breath,
For I am not the kind of person to fear death.
Perhaps I will see a cure for Parkinson,
Then I will know I have had a good run.
I will balance the good against the bad,
A loving wife is what I have had.
She has accompanied me down the years,
Helped me when I shed my tears,
Not tears of self pity; Oh no,
Tears for hardships of friends that I know.
I have had one very happy life,
For I was blessed with a loving wife.
I always had work and earned a wage,
Went for trips never lived in a cage.
So I will be thankful for all of the good.
It is something I would share with you if I could.
As for the bad Parkinson and my old age,
Please bear with me if I sometimes rage.
Silver Spun Sand | May 10, 2012 - 18:45
Bern...I have just read this to my husband, and he was so very moved. He has had Parkinson's now for twelve years, having been diagnosed when he was fifty-two.
It is when I read words such as yours, or see the look of achievement on my husband's face when he finally accomplishes a task that has taken him ages (like getting dressed in the morning, unaided) that makes me feel very humble. I admire your courage, and my husbands, and all the thousands of others with Parkinson's, and I hope, with all my heart, they do find a cure in the not too distant future.
Cannot thank you enough for your wonderful poem, and I shall look forward to reading much more of your work on ABC;-)
Tina
Bernard Shaw | May 10, 2012 - 19:49
Hello Tina. I wrote this poem the first of a triologie about Parkinson's. I will post some more in the next few days. Give Your Husband my best regards. I am on five Sinemet every day. My lovely wife cares for me and I write a short story every day to keep my old brain working. Bless you both and all of the other Parkies. Bern
Parkinson's. 1987
It started off my back did ache,
Then my hands began to shake.
My legs are heavy like lumps of lead,
Then a slight shaking of my head.
With eyes on the ground and head bent low,
Faster and faster, I did go.
Drinking tea from out of a cup,
Sitting down or getting up.
Writing a letter or signing my name,
To me now it is all the same.
Everything seems filled with pain.
It will not get better, this I know,
For Doctor Parkinson, tells me so.
So, If I freeze or shake a lot,
Please do not rush me , better not.
if I fall flat upon my face,
Pick me up it's no disgrace.
I'm not crazy when I look,
Like some character from out of a book.
When I dribble like a child,
My face a mask like something wild.
Please do not think that I am insane,
It is just that Parkinson again.
in my own inimitable way,
I take my tablets every day.
Sinemet and a lot more,
Better count them just to make sure.
When the Doctor say's to me,
You are doing well, That I can see.
I think my thoughts one by one.
With a lot of prayers for Parkinson.
When next you see me, Please don't stare,
Just look and smile, I know you care.
Do not try to help me, Let me be,
For Parkinson does not bother me.
When my voice is very low,
It won't get louder, I'll have you know.
So listen carefully when I am spouting,
My whisper to you is really shouting.
As I type every day in the two old finger way.
My thoughts stray back though the years,
Trying to sort out all my fears.
Is it something that I have done,
That has given me this Parkinson.
So Dear reader, if you suffer too,
My only words of advice to you.
Get up and about, don't sit and mope,
Trust in God , Don't give up hope.
For one day there will surely be,
A cure for you and a cure for me.
Bernard Shaw | May 11, 2012 - 07:25
For all Parkies everywhere.
Diagnosis
You have Parkinson's I heard the Doctor say,
Was he talking to me as he looked the other way.
Of course I did not believe him, who would,
So I went to another Doctor as I thought I should.
I tried not to shake or nod my weary head,
I tried not to think of what the other Doctor said.
He told me to cross the floor to the other side of the room,
Turn round and come back, this really sealed my doom.
With hesitating steps I toppled on the way,
I re-crossed the room to hear what he had to say.
Lay yourself down on the couch and close your eyes,
Now move your index finger to your nose, I had another surprise.
My hand did not obey me at least not straight away,
Why the heck I hesitated, I really cannot say.
He told me to pull some faces but my face muscles had no power,
I was shaking all over in the space of one short hour.
Now shake both hands held out at arms length,
I shook my right hand my left had no strength.
He asked me many questions, I answered as best I could,
My soft voice betrayed me, as I knew it would.
You have Parkinson's, I am sorry to have to say,
I still did not believe this but he eventually had his way.
He sent me into hospital just for observation,
I now fell apart much to my consternation.
I fought against this monster, I as stubborn as a mule,
Until I learned to accept then I felt really cool.
But I was a fool for feeling so cocky bold,
As I was quickly shown that Parkinson has its hold.
Spell after spell in the hospital of my choice,
With logopaedy training to strengthen up my voice.
Depressions came a long it was a bitter blow,
Thinking thoughts that no-one ought to know.
Years passed, hospitals were becoming part of my life.
Pain came and went after cutting like a knife.
A new drug, SINEMET is its name,
Life is much better after taking of the same.
In all my sixteen years of living with this thing,
I truly had some one that made my heart to sing.
A care giver my lovely lady wife,
Always cheerful, caring, she has saved my life.
When I am down in the dumps, depressed,
Who’s loving hands help me to get dressed.
She bathes me, she feeds me, sees to my every need,
Shaving me, caressing me, a Care-Giver indeed.
If there is ever a cure, I am sure that it will come,
I will ever praise her for all of the work she has done.
Now to finish off my tale of my Parkinson shakes,
Let the cure come quickly for all our Parky sakes.
Bernard Shaw | May 11, 2012 - 07:32
A Parkie's Day.
Take my tablets pull myself out of bed,
As usual my feet are like lumps of lead.
Stagger to the bathroom my bladder very full,
Wait for the relief as I feel the well-known pull.
Have a good hot shower to take the stiffness away,
Ready for my breakfast to start another day.
My Lady Wife has shaved me to make me look smart,
This is when my shakes threaten to pull me apart.
I feel very tempted to take another Sinemet,
But I won't give in, at least not yet.
Start the computer read my e-mail post,
This is what I like doing the most.
Other Parkies have written to me,
Makes me feel like part of the family.
I read of compassion and the feelings of care,
That the other Parkies want with me to share.
If there is anything that I need to know,
Advice will come my way and I feel a warm glow.
Pains in my neck and also in my back,
Sometimes so many that I begin to lose track.
With my walking stick clutched tightly in my hand,
I totter down the street, my face trying to look bland.
At our favourite coffee shop we order coffee and cake,
They kindly give me a straw, as they know my hands will shake.
Then back home to prepare for the midday lunch,
With the soft kinds of vegetables, that I can slowly munch.
My lovely Lady Wife cooks those things that I like to eat,
Shaking hands struggle to fork that pre cut meat.
After lunch I go off to my bed to have a little sleep,
The stiffness and pain make me want to weep.
Then another Sinemet, wait until it takes affect,
Hoping that there will be no bad after-effect.
Then we have our tea and discuss the daily news,
And other little things such as buying some new shoes.
Take my evening tablets dreading a sleepless night,
My lovely lady hugs and cuddles to me up tight.
With a bit of luck I drop off to sleep.
With my prayers said for all the people that I know,
Wait for the morning light that comes ever so slow.
On to another day with Parkinson in my way,
How I wish for my youth when life was just play.
Silver Spun Sand | May 11, 2012 - 08:10
Bern - I see you have been busy, this fine, bright morning and I have read every word...with tears in my eyes, might I add. So much of what you have written rings so true about my husband. He also takes a cocktail of medication every day. Sinemet (6 control release, 6 Sinemet plus) and 7, two milligram Requip.
I'm not sure if you are aware that there are more 'Parky People' on ABC...'Denzella' being one of them. If you look back on her work you will see she posted some special stories for 'Parkinson's Awareness Week', which was about a week of so ago now, so you may be interested to look these up.
Thank you so much for 'posting' these wonderful poems. Amazing, isn't it, that if we share our problems, we realise we are not alone. Far from it;-)
Hope today is a good one for you on the roller-coaster ride they call 'Parkinsons'.
Tina
Bernard Shaw | May 11, 2012 - 08:19
Thank you Tina, Today has started well I managed to shave my face with a dry electric shaver without it falling out of my hands. I used to be on a few Parkinson Forums but I found it was too much for me so I left them. .It is surprising how many people have Parkinson's. I was on re-quip for a while but itcaused me to have hallucinations. I will look for other Parkie people on this forum and read how they are coping. Hope your days is not too stress filled bless you both from Bern.
Bernard Shaw | May 11, 2012 - 09:50
For All Caregivers
Hold my hand for I am afraid,
I cannot do anything without your aid.
Stay patient, stay gentle, yours is a hard task,
Try to remember me before my face was a mask.
My Parkinson illness is here to stay,
I have this feeling that it will not go away.
Slow and clumsy my coordination a mess,
Each day you give me more not less.
Muscles have no more power you know,
Every thing I do is so very slow.
I cannot help you when you me dress,
Or what is worse when you clean up my mess.
A piteous effort on my part,
When my body is literally falling apart.
Once there was nothing that I could not do,
My darling now I must rely on you.
Now you too are getting older and frail,
Who is to help me if and when you fail?
I speak to you but my voice is so weak,
You have to strain whenever I speak.
I have difficulties to find a word,
I do not know if you have heard.
Writing to tell you of my great love,
Is all I can do now my sweet dove?
I cannot always caress your cheek,
The strength in my arms is very weak
My love for you now and in the past,
Is the only thing that I know will last?
I am a rich man when I bask in your love,
You know I am meek not the kind to shove.
Your love is gentle you were never rough,
You never waiver when things are tough.
What did I do to make you love me?
I was a no-body what in me did you see.
Whatever it was I am grateful to you,
You made me happy to you I am true.
This burden of illness is sometimes too great.
I just thank the good Lord that you are my mate.