Parkinson’s Awareness Week Approx 638 words
Plus 334 words that are included only as an example and don’t need to be read.
So far I have written in general terms about Parkinson’s and also about how the condition has affected me but today I would like to write something about the affect it has had on my relationship with my family. Well, to begin, I was always pleased to do anything that helped my two daughters such as helping to decorate or doing a spot of gardening, in fact, anything that lightened their load. Shopping trips were enjoyed by the three of us as I could easily keep up…trying on shoes and eating salad with the best of them! Now if I offer to help I sense they are thinking oh, no, this will take twice as long or if I am out shopping with them they will sit me down on some bench saying it’ll be quicker if we just nip in here and off they go. I sit there watching people who seem older than me whizz past and I admit to feeling slightly resentful.
Where has all my pizzazz gone? I used to be able to dash in and out of shops racing round to get whatever it was I wanted. . But I sit and wait for my daughters to return and I say nothing. But still…I harbour some small resentment! I can’t be the companion I once was any more because I am no longer their physical equal. I have to be cared for and it hurts. It hurts like hell! Although they are both in their thirties, I still want to do the caring…I’m their mother it is too early for a role reversal. I want my old job back. Then there is my husband, he always looks tired and his health is not as good as it was and I worry about the effects my condition will have on him. I don’t want to drag him down.
After what I have just said, this might seem trivial by comparison, but another instance of feeling slightly resentful is, if we go to a party or, when on holiday, we get the opportunity to have a dance, then it hits home because my husband and I used to love to have a dance, usually a jive, and though I say it myself we weren’t bad. We might not have made it to the final of Strictly Come Dancing but we enjoyed ourselves. Now I have to sit and watch whilst suggesting to my husband that he goes and finds a dance partner from our group. If on the rare occasion I do venture on to the dance floor to a slow jive I soon feel as if I will fall because my legs seem to stay still while my body attempts to do the turns.
The very worst part of all this, however, is that I now have a grandson and although at the moment I can still pick him up and hold him I know I will not be able to do that for much longer because he is getting heavier. As it is I sometimes have to ask my husband to carry him downstairs because I always have to hold onto the banister and to do this with one hand while holding a wriggling baby with the other is something I only dare do when I am at maximum performance.
It is not necessary to read this last part as it is only here as an example of a condition known as Dystonia which I get when I am ‘off’ - meaning my medication has worn off the result of which is that I cannot use my fingers individually and so I end up with typing that looks like this.
This wee is Parkinson’s Awarenss week when our branch alongwith most other branches attempt to make tpeople more aware of the coonditon and also to raise funds. However,due to the illness of our Chairman, whose wife is the secretary and the illnesof our Deputy Chairman and his wife too is ill. Therefore our branchare not doing anyting tis year. So I thought I would use the ggood office of this site to contribute in my ownsmal way to raise aweness of h condition.
Parkinson’s is a nurelogical condition of he brain whih affects Substatia Nigra part of t brain by killing the nerve cels thatprduce dopamine wich in turn affect motor capabilties such as movement. Unfrtunately almost 80% of these cells are destroyed before before ssymptoms are shown. My medcation has nt kicked in so you wll see I am ntfuntiningtat well I get a secondary conditonknownas Destonia and then I cant use y fingrs individually. Although thre are drugs that trat the cnditin theselose aeffectiveness over time. They alsocan have quite nasty sid affects that ar almot as ba as the condiitn; Dskynesia being one which I alos have. God ws having a righ laugh when he gve the esearchrs this little gem s what is the effectof Dsykinesia…involuntary movement! LOL.
Another drug used is one that mimics dompamine but that too has some nasty and quite strang e side effects. Sucha s a type o f obsessve ocmpuiv edisordr the symptoms of which are that thye an’t stop pspendign or gambling and also includeds hypersexuality. I always think one would need this last one to earn a fe bob to finace te first two. Sorry but ilvoe to laugh. It’s almost an affliction for which I don’t want a cure. Whey hey meidction startingot come on board. Perhaps not!
Annyway, as far as neuroligcal conditions are concerned Motor Nuerone, Multiple sclerosois and Huntingdon’s are in my opinion worse than Parkinsosn.
.
Still, if nothing else it keeps the spellchecker on my computer busy!
To be continued until Friday
Comments
blighters rock | April 18, 2012 - 09:31
Keep smiling, Denzella. The thing that shines through this is your desire to be of use to your loved ones. It's helpful to me to read because my Mum has had frontal lobe dementia for five years now. She's very drowsy all the time, but we go for walks and keep smiling together. She appreciates the human touch and probably the best thing is that she's not on any drugs any more. Un like you, they just knocked her for six, although they stopped psychotic thoughts.
I have to look at the positives to stay strong through this.
I can see so many positives in your life from this piece and the best thing to do when I get down is to remember all the things I have to be grateful for.
Rhiannonw | April 18, 2012 - 09:31
Really helpful that you can write so honestly, without bitterness. Bitterness so often makes continuance of family sharing so difficult, and difficult for those who want to help or support. I think your daughters and husband must value your interest and supportive attitudes to their daily problems of life far more important than what you can or cant do practically to help. Rhiannon
The Other Terre... | April 18, 2012 - 11:54
Thanks again for these posts Moya.
One interesting thing about Parkinson's is that a lot of people with Parkinson's do seem to enjoy writing, I often have write-offs with my friend Jo who has the condition and Parkinson's UK have actually produced an information sheet on writing, and include a Creative Corner on their forum for people with Parkinson's to share their poems and stories.
Silver Spun Sand | April 18, 2012 - 12:02
Hi again, Moya.
Ever since my husband's diagnosis, twelve years ago now, it has gradually reshaped our lives, but I have often wondered what different shape it might have taken on if I'd been the one with Parkinson's instead. That's why I found your account particularly interesting and absorbing.
Those ‘off periods’ you mention are hell, as I know only too well. My husband finds it increasingly difficult to use the mouse and computer even at other times, so I take my hat off to you for the amazing way you cope, as I am sure your family does, to say the very least.
Looking forward to the next part, and so is ‘other half’;-)
Tina
skinner_jennifer | April 18, 2012 - 13:33
This is an amazing piece of writing Moya. Not really
knowing much about Parkinson's, I found this
incredibly informative and I think people with it
are extremely brave.
I can only echo, what has already been said above,
and look forward to reading more too.
Jenny.
jolono | April 19, 2012 - 08:50
Moya, once again you have enlightened me. I admit to having known nothing about Parkinsons apart from the hand tremors. My only experience with it has been by watching my hero Muhammed Ali over the past few years and seeing how bad he has become. I met the great man once over 20 years ago and he was so full of life he seemed to be invincible. Now I can't bear to watch when he comes on the tele.
So your writing on here has worked, I for one are much more aware of the desease by reading and enjoying your posts. Well done!
Denzella | April 19, 2012 - 19:31
Hello Blighters rock,
I am so sorry to hear about your Mum and I know how difficult it can be to stay positive when you see a loved one suffering. Your walks with your Mum must be something she looks forward to and you will be able to take comfort from the memory of them at some point in the future. Treasure every moment with her and take comfort from knowing you are spending 'quality time' with her when she needs you most.
Thank you for reading
Moya
Denzella | April 19, 2012 - 19:39
Hello Rhiannonw,
Thank you for reading and commenting. Yes, my daughters do appreciate my support in their ventures although now it is not such a participating support. My Husband is the same but all of them as well as my sister and brother come to me if they have a problem. Oh, and my nieces and nephews too and I am glad that they do.
My Husband and daughters were very supportive of me when I was recovering from cancer as was my sister and brother so I have every reason to want to help them when I can.
Thank you for reading.
Moya
Denzella | April 19, 2012 - 19:49
Hello The Other Terre,
Yes you are right about people with Parkinson's liking to write. For me, though, I have always wanted to write but having a seven day a week business meant I never had the time. Now I feel as if I'm running out of time so I've got to get on with it. More than that it fills the wee small hours when I sometimes feel as if I'm the only person awake but I've got so used to it that I feel deprived of valuable writing time if I sleep beyond about five o'clock. No pleasing some people is there?
Yes I had forgotten about the Creative Corner though I have entered the Mervyn Peake Awards for the past two years and I have submitted another poem this year.
Thanks for the read.
Moya
Denzella | April 19, 2012 - 19:57
Hello Tina,
Thank you for reading and commenting. I am sorry your Husband is finding it increasingly difficult to use the computer though one of my nephews bought me a voice recognition package which I am in the process of learning how to use because whenever I write it is soul destroying to see so many red lines under words where I've hit the wrong key.
I am so glad that you and your Husband are getting something out of these postings and I am delighted that the feedback I'm getting is telling me that I have opened their eyes to the condition. That is the point of Parkinson's Awareness Week and so I feel justified in posting what some might feel is a bit of dry information.
Thanks once again and regards to your Husband.
Moya
Denzella | April 19, 2012 - 20:02
Hello Jenny,
Thank you for your kind comment and taking the trouble to read the piece in the first place.
I hope it has not been too dry a read. However I have been delighted by the feedback as all seem to say something to the effect that they have learned something about the condition. That is all I set out to do.
Thanks once again, Jenny.
Moya
Denzella | April 19, 2012 - 20:11
Aaaw Jolono
Thanks me old Dagenham mate! I do appreciate what you have said about my postings bringing you enlightenment about the condition. Yes, Muhammed Ali is a shadow of his former self and it is quite pitiful to see such a powerhouse of a man becoming a shambling wreck through the ravages of this rotten condition. Michael J Fox is another sufferer and he has written a book, I believe, about his experiences.
I am so pleased also that you think my writing has worked and that I have raised awareness.
Thanks for that.
Moya
skinner_jennifer | April 19, 2012 - 21:41
Dear Moya,
I really cannot comprehend what you are going through, even though you have your family, I
have such great admiration for you, with your
sense of humour and fun, inless you had written
this, I would have never known.
I wish that more people could read this, it puts
so much of life in perspective.
I'm very deeply moved by the fact you have got on
with life and that you have such a sense of humour, and you don't take life to seriously, you are a credit to us all.
Jenny.
Denzella | April 20, 2012 - 04:57
Hello Jenny,
Thank yo for your very kind words but please don't worry about what I am going through because I can cope. I'm a bit like my Mum in that respect...tough as old boots! Actually, the older I get the more I realise that getting old is not for wimps! Why couldn't I have got old when I was young I was stronger then? Confused! Join the club.
You always say such lovely things, Jenny, but I am the one moved by your kindness.
Thank you.
Moya
Cavalcaderl | April 29, 2012 - 23:33
new Denzella
Dear Moya,thankyou for all news explaining
dreadful "Parkinsons" I know use pictures now,
and photos,hospitals bring memories back may help.
Yes, we have things in our families,and in laws,
and two my beloved ones,always ask why! mine.
Dread the day when gets worse,whatever! see them.
The immobility part. But with care and medications,
or injections some? cope! worse thing is how to approach and ask! diffiuclt for daughter and son-in
law talk about,and me,not be in tears,then they say not heritary, read up on MS too,more should support,like you may have,and get all the help in the world, and correct care! I wrote of book,felt so
helpful then put aside forget,not knowing and different stages of things. We are so advanced now,
but all must fight proper drugs to realse pain,so much,all these diseases,whatever have cope with.
One in Somerset crawls along floor,not can all undertsand. Love care and prayers I know but many can't understand,bu can empathise with you on many points and things, as I know quite a few diseases
and other things. Firends meetings chats, and share
different stages of all, is better than some left alone. I admire your courage and brilliant writer,
with great sence of humour, beat me.
And me cat has nine lives, mine well past!
Someone gave me a tip here,always smile. By gum!
I do now, and a bit of bright cheap bling! and bright
colours, and umbrellas feel good. Times change where
all was quiet,in diseases,one could help families and
visits needed,chat over the fence,daily things,borrow
cup sugar,or 1/- for gas meter or tv. We need more love and mixing,some I know aged 9o hospital alone,
may have family fallen out,strong go on own like be independent,till meet family again,sad world.
One can look so much on on Search Wiikipedia,we did
once another one? Utricaria Omg what is that,big wealds come out size of apples over body,alergy eggs,or grass whatever mine husband had,from food hotel, or wedding long grass cut he was photoing
the church for wedding we went.
Looking foreward next chapter.
bless you take care press for more help.
I wrote once MP said all medical equipment should be free,for disabled,and phones and tv free!
julie xx
sue dinum | April 30, 2012 - 17:36
Hi Moya, I understand your resentment completely. I’m sure I would be ten times worse than you in your position. To find we cannot do the things we used to is bad enough in the normal passage of time with deterioration and wear and tear of one’s body; but to suffer these things prematurely... well, your anger is understandable and justified. And it must be difficult to hide at times too, like with the dancing, and with the grandchildren, and the last thing you want to be is an old grump for your family. Reading your contributions has certainly brought a lot of things into a truer perspective.
Well, done, you’re doing a great job with this.
Moving onto next...
Denzella | May 1, 2012 - 22:00
Hello Cavalcader,
Julie,
Thank you for reading and commenting on this piece.
I am so sorry that your family has been touched by something similar. It is very distressing for the family as well as the sufferer when something like this happens to someone one is close to.
You are quite inspirational in the way you are prepared to campaign on behalf of others when you have your own difficulties but I sense that besides having a love of animals you also have a love of people. Now, Julie, take care and no more falls.
Moya
Denzella | May 1, 2012 - 22:06
Hello Trev,
Thank you for reading and commenting on this piece.
I do very much appreciate you taking the time and trouble to read all of these posts, particularly as it takes you away from your own work.
Yes, I do admit to feeling a teensy bit resentful when I can't do what I used to. More so now that I have a grandson and my daughter could do with a bit of help which I am not always able to give.
Thanks once again, Trev,
Moya