Parkinson’s Awareness Week Please Read
The Final Instalment
Yesterday I wrote about a lady in our group whom I think is truly inspirational and I wrote about some of the drugs used to control Parkinson’s and their possible side effects, some of which are very unpleasant. However, there is another treatment available that is only suitable for some people. It is known as Deep Brain Stimulation and my doctor thought I might be a suitable candidate for this treatment. Apparently, it involves drilling into my brain while I am still conscious because it is necessary for me to be awake so that they can see if what they are doing is improving my symptoms. I don’t wish to appear ungrateful and I thank them for their kind offer but on this occasion I feel I must decline because let me tell you now I might not have much of a brain but it is the only one I’ve got and no-one is coming anywhere near me with a drill in their hand. That sort of stimulation I can do without thank you very much. I prefer to watch the telly. My sister had to be conscious when she had to have her new pacemaker fitted and that was pretty horrendous and she is braver than me.
As I’ve got older I find I am less able to tolerate pain. A few years ago I had a deep vein thrombosis and had to have injections in the stomach and I found that quite difficult as it is one thing offering up an arm for injection but it felt very different offering up my stomach. The nurse told me I could have the injection in my arm but that it would hurt more. Well, the injections in the stomach hurt so I thought I would go for having it in the arm. Big mistake! I spent three days with my arm packed in ice it was so painful. I was also on Warfarin and that meant I had to have blood tests taken every couple of days but my veins were collapsing and it was difficult for the nurses to get blood. One day a nurse made ten attempts to get some but my veins would have none of it and absolutely refused to give the poor woman a drop.
In the end a special male blood nurse had to be sent for and he did manage to get some but, judging by the look of him, I think he may have been flown in from Transylvania! I’m pretty sure, if my memory serves me well, that he was wearing a black cape and he definitely needed to see a dentist as I think a bit of orthodontic work could well bring some improvement to those dreadful fangs. Still, hats off to him, he did manage to get some blood though I must admit to thinking at the time that biting into my neck was not the most hygienic method and why he always came at night when I know for a fact the surgery closes at six… Still, he was always gone by midnight!
Anyway, I want to finish this Parkinson’s Awareness Week by sharing with you what I think are some funny memories but which have nothing to do with Parkinson’s but as I think you may all, by now, be suffering from Parkinson’s overload, especially if you have stuck with me all the week, then you deserve some light relief. It seems to me that in our family some of our funniest moments have been in hospital wards and I’m sorry to say what I am about to write involves yet another operation so I apologise for that but I hope you think this little anecdote is worth it. It always makes me laugh when I think about it.
The first thing to say is that my Husband is a thorough going gentleman. It’s true…he is, and was, when this incident took place! For example, when we were out he always insisted on carrying the shopping. He did this automatically and he would not allow me to carry any unless we really had got a lot of bags. So, to come to the point, some years back I was in hospital recovering from an operation and I had to have a catheter fitted which as you probably know is a big, industrial strength see-through plastic bag which is attached internally and when I was in bed it was hung over the side and I feel sure it’s not necessary for me to describe its purpose but if I needed to walk about it was necessary for this thing to accompany me.
Well, my husband decided to take me on a turn around the ward and so I unhitched my, full to almost bursting, catheter, from the bed and gentleman that he undoubtedly is, and was, immediately went to take it from me whilst I struggled to hold on to what I considered was personal and not particularly hygienic for someone else to be holding. So there we are in the middle of the ward fighting to gain possession of the catheter until with his superior strength he won this most sought after prize! In frustration at being thwarted I just spluttered “Oh, yes…I knew I could rely on you to take the piss!” Then we both collapsed laughing. I think we came very close to being thrown out…well, we certainly got a look from the Ward Sister which seemed to say “There are sick people here, don't you know?”
This second story you will be relieved to hear is the story that closes this Parkinson’s Awareness Week. Although, once again, it has nothing to do with Parkinson’s but it is concerned with the bowel operation that I had to have shortly after being diagnosed with Parkinson’s. I was still in hospital recovering from this operation and my youngest daughter and my husband were visiting when I suffered what some might say was an unreasonable amount of flatulence, well, in mitigation, it was a bowel ward after all, but it was of some duration and not as quiet as one might like. My husband and daughter both looked at me in astonishment before, without any pre-arranged signal, they both started tap dancing down the ward to cover the noise. A somewhat futile endeavour! As you can imagine the whole ward was in uproar as everybody but me was laughing uncontrollably. A very insensitive bunch of people in my opinion…
The End
If you have stuck with me till now then I thank you. But after that last revelation I’m never gonna be able to come to a poetry reading night now, am I?
Comments
jolono | April 20, 2012 - 10:15
Nonsense, you'll be guest of honour!
Followed it all week and enjoyed every one. I am a well educated Parkinson person now. Thank you Moya.
Geoffrey | April 20, 2012 - 10:51
Much the same thing happened to me after an appendix operation. My bowels stopped working and when they restarted the noise was continuous. Unfortunately none of my visitors could tapdance.
Back on the big P; I'm fortunate in having a hospital within a 20 min. bus ride which terminates in the hospital car park! Recently I had a week there and as I recovered from my illness I had a really spastic reaction in my head a right arm. Fortunately my specialist was in the hospital and ordered an MRI scan which he said was clear. He was correct fortunately and I was back to 'normal' the next day.
I don't think I'm as far along the line as yourself but like you all my 'get up and go' has 'got up and went.'
The other good bit of news (in my case) is that I wasn't diagnosed until I was in my 80s and one sort of expects something at this age.
Thanks for the writing on the subject, I might see if there's a local group whose collective shoulder I can go and cry on.
Rhiannonw | April 20, 2012 - 12:13
Congratulations on this marathon, and the quality and interest and fun of your writing. You have shown us not only some of what you cope with, but much about others' different problems which bring such struggles, and often such perseverence and love. Thank you, Rh
Denzella | April 20, 2012 - 15:30
Hello Jolono,
Thanks for the read, mate! So glad you think it was worth your time to read and to stay with me until the end is much appreciated.
If I do come one day to a reading I'll be the one in dark glasses stood behind someone very, very tall! You don't happen to be very, very tall, do you?
Thank you, Jolono.
jolono | April 20, 2012 - 15:33
9ft 3ins!
Denzella | April 20, 2012 - 15:40
Oh, Geoffrey, your first paragraph made me laugh out loud! What indignities we do suffer! But if it helps I am getting tuition for my husband and daughter to become tap dancing teachers so if you should ever be in need...
I would definitely seek out a support group. Our branch has been a lifeline to me. Apart from Ten Pin Bowling, we have an exercise class every other week, we meet for lunch once a month and we go on holiday once a year as well as going on lots of different outings. We just have fun, fun, fun!
Thanks for reading and staying with it.
Moya
Denzella | April 20, 2012 - 15:42
Oh, so you're as tall as I am wide, then?
Denzella | April 20, 2012 - 15:48
Hello Rhiannonw,
Thank you for reading, commenting and staying with me till the end. It is much appreciated.
Thank you also for your kind comments about my writing and if I have managed to get across that Parkinson's is not just a bit of a shake then I am satisfied.
Thank you once again
Moya
Denzella | April 20, 2012 - 15:52
That comment was for you Jolono but as you can see I'm not too bright and wasn't concentrating on what I was doing. Just come back from Parkie lunch! That's my excuse, anyway.
Moya
jolono | April 20, 2012 - 16:19
That white wine!
sid | April 23, 2012 - 16:22
Denzella, thankyou from me for shedding light on a condition I knew nothing of. And you do it with such a wicked sense of humour. My mum suffers from M.S and wants me to write about her experience of it; I'm not sure how to go about it but you have inspired me to give it a go. Thanks again, and well done
Richard L. Prov... | April 24, 2012 - 00:28
Hello Denzella, this is a most wonderful and heartfelt story, and I thank you for sharing your most precious moments. I never realized the challenge of Parkinson's and being more aware will help me understand the strength of special people like you. Many blessings, from Richard and Esther Provencher, Truro, Nova Scotia, Canada.
PS. We also have an interesting Website at: www.wsprog.com/rp/. There are many free downloads---short story and poetry collections, as well as novels. If you wish to receive free, the three novels for sale, I will send them to you or any other abctaler, as an attachment, for free. Our e-mail: richardprov1@netscape.net.
Denzella | April 24, 2012 - 06:46
Bless you Sid,
Thank you for reading and your kind comments. Much appreciated. MS is nasty and I'm sorry to hear your Mum suffers from it. As for writing about it you should give it a go. It's only by reading first hand accounts of the experiences of sufferers and the effects on their families that people will gain understanding of what living with a condition such as MS is like. If my attempt to raise awareness of Parkinson's has inspired you to try to write about MS then I am well satisfied. Go for it, Sid, my boy!
Moya
Denzella | April 25, 2012 - 22:40
Hello Richard,
Thank you for reading and commenting on Parkinson's Awareness week. I'm afraid there is not that much that is special about me I just wanted to raise awareness of the condition for all the people who have it worse than I do or have had it longer.
The common perception is that it is just a tremor in the hand but it is so much more than that for some people.
Thank you very much for your kind offer too and I will certainly take a look at your website.
Thank you once again, Richard and regards also to Esther.
Moya
Cavalcaderl | April 29, 2012 - 23:40
new Denzella
Hi! Just keyed into your last chapter,
on your Parkinsons,must read all others,
gradually. You an Geoffrey made me,laugh!
Mine is always full of flatulence wind!
Through night,loves curries,course once taken
out hearing aid, any nosie is quieter,I say is that
you gone too sleep. I used get caught out? Amnd would cough,hide sound or,make shuffling noise on pavements, embarrasing. I know about ops' too some experiences in no one or two people feel the same way about pain. Do they, you mention your poor mum MS
yes you could write a funny side to it maybe. I have inlaw with bad state,and another one now, and two dear ones of mine. Only couple years ago.
When the darlings came not knowing they were, at time
been shops and church to,all happy! Hello! mum do you
want the good news or the bad first? ok. etc' told me both got, well one first then him year after. Not
going tell me to upset me,mine said they gone home then. So called my priest devasted! course why your ownly one. Unyet they say not hereditary. Been Thailand bitten mosquitoes. So found address and wrote sent me package! so I know about stages could
and will go through! And how ususally can't drive,walk retricted wheelchair, medication,maybe injections and may have to have ramps houses or bungalow. Very sad thing talk of. Like Parkinsons new tablet coming out. If nothing is NHS whatever!
Can't afford I wrote once case in paper near hear,poor women needed a special pills,too MP.
now they have re-considered she has. We can only listen hope love and pray! take there hands be there for whatever maybe. But as we go through life! I see so many left alone tackle all,and hear so much bless them and you. And never look at stages and book if they like talk,listen they don't much. Yes of course there is a stem cell. But sound terrible and you. Unless absolutely necessary so. Some can talk of things, some can't. One friend I see about,listen tells me of heart,explains it all, yuck! have too move on. And some know elderly have go into hospial,
ops,all alone, or may have relations,fall out go it alone many things sad. Just take one day at a time That's a song many many things. I laughed at the tap shoes? and the catheter owch! how did you know I have some, can't tap much just to music rhythm, watch the floors? Funny side was asked me show some steps once in our day time elderly groups. I have got
Dvd so complicated.ps read up in book have on MS similiar many ways,stem cells,brain signals,and movement,read sent book the,shoved in draw away.
So many medical names now,never heard of, even children. If everyone wrote MP's get all done free!
and perscriptions expensive things, to be given free.
Be a better world.put GT back in Britain maybe.
take care julie bless you xx
sue dinum | April 30, 2012 - 17:41
Ah yes, flatulence, Moya... it knows no bounds, is a law unto itself, and seems determined to shame us at the most inappropriate times... what did we ever do to upset it? Of course there are probably very reasonable answers to that one. But shame on those two reprobates for abandoning you at such a time, no matter how red-faced they might have been; after all, in your case, you were in the right place at the right time.
I’ve really enjoyed your series, Moya, and in dereference to the seriousness of the subject matter, you’ve illuminated it with humour. As usual, it is full of your warmth and affection and I have learned so much about Parkinson’s. I apologize for not having read it at the appropriate time.
Congratulations on a superb and enlightening series of articles and thanks for the hard work you’ve put on raising awareness.
Lots and lots of love to you, honey-babe.
Trev x
Denzella | May 1, 2012 - 22:26
Hello Cavalcader,
Julie,
Thank you for reading and commenting on this piece. Yes I too have tried the old cough routine and the scraping of feet but flatulence seems to be an affliction that likes to constantly surprise. It certainly shows no sign of having respect for one's dignity.
But still if nothing else my daughter and my husband made the other patients in the ward laugh uncontrollably but unfortunately I too started laughing which was the wrong thing to do in that situation because it only made matters worse.
Take care, Julie
Denzella | May 1, 2012 - 22:37
Hello Trev,
Thank you for sticking with me through all of this. Quite a mammoth task when you have read all of them almost in one go.
I'm so glad you managed to enjoy these pieces because my worry was always that they would be boring to anyone not affected by Parkinson's.
I very much appreciate your comments on the way I have written these pieces too. I find I always pay more attention to anything if there is a bit of humour in it. Some of the speakers we have at our meetings can be a bit too enthusiastic about their subject and forget to inject a bit of humour in it and as I suffer from Sudden Onset Sleep I usually try to get a front seat at the back...
And lots and lots of love to you too, Trev,
Moya x
Richard L. Prov... | July 23, 2012 - 02:29
Hello again, Moya. Your comments on my comment are very kind. And your braveness is an inspiration. As of today, July 22, 2012 my new E-mail is: richardprov2@gmail.com. Take care, from Richard and Esther.
Denzella | July 23, 2012 - 06:32
Hello Richard and Esther,
Thank you for giving me your new email address.
I will put in my email address book so I don't lose it.
Moya