Parkinson’s Awareness Week
Yesterday, I wrote about the condition generally and today I would like to tell you a little bit about how it has affected me. To begin, then, I had a provisional diagnosis in 2007 but the Consultant thought I should have a brain scan to confirm this which in itself is unusual. The reason for this was that I had a severe tremor in my legs as opposed to my hands and as there are other types of tremor a brain scan was needed in order to confirm what he suspected. However, a few weeks after this provisional diagnosis and before I had the scan I was diagnosed with bowel cancer which was a bolt out of the blue because my doctor had sent me to a specialist for another problem. The upshot of this was that my Parkinson’s treatment had to go on hold while the second specialist dealt with the cancer by means of surgery. I did not recover well from this and two weeks after coming home I was back in hospital for a short time.
This meant the brain scan had to be delayed until such time as I was fit enough to make the journey of some thirty miles to another hospital. As a consequence I was receiving very little treatment for my Parkinson’s because it was still not confirmed. However, the trauma of the cancer treatment and the time spent recovering had the effect of accelerating the condition and it took my Consultant quite some time to bring my symptoms to a manageable level. Both he and the Parkinson’s specialist nurse were very kind and they suggested that I join the local Parkinson’s support group. I was not at all keen on this idea as I didn’t want to confront what might be my future. Eventually, however, I was persuaded to join and what a revelation that has been.
Yes, I do see people who are in the later stages and it can be quite terrifying to witness how quickly some people deteriorate and it is also true that a number of members that were in the group when I joined have since died. That is the downside of being in the group but, fortunately, there in an upside too as the empathy, support and friendship that has come my way, since joining, is something I never anticipated. The friends I have made have proved to be the most caring people it has been my privilege to meet in a lifetime. Without their friendship and support I think I would have gone into a steep decline but through mutual concern we hold one another up. And, I have to say, since joining, I have never laughed so much because, somewhat surprisingly, it is often our very symptoms that give us cause for mirth.
So, what are some of the symptoms? First let me dispel the myth that Parkinson’s is just a tremor in the hand. It can be that but there can also be a number of other symptoms that accompany the tremor. For example, there can be a lot of pain, often in the neck, shoulder or back. Another problem is rigidity which is something I have problems with as if when I am in bed I lay in one position for any length of time then I get very stiff and this leads to back pain so I have to change position but I can hardly move. Somehow I have to push myself into a half upright position and then gradually push myself upright, but I can’t do this without the help of my husband so his sleep is disturbed. Then he helps me to stagger usually to my computer in another room.
I might have only been in bed an hour for this to happen though more often I wake between three and four and that is when I do most of my writing. Strangely, I do not feel particularly tired the next day although I usually have lunch around midday and then I sleep for a bit while the news is on. The drone sends me to sleep but only for about twenty minutes and that keeps me going until tea time when once again I fall asleep but this time only for about ten minutes. The lack of sleep doesn’t worry me for two reasons, the first being it gives me time to write and secondly the longer I sleep the more pain I am in when I do wake up so it is the lesser of two evils.
Somewhat ironically, I also have, what I think is called, Sudden Onset Sleep. It worries my Husband because it means that I can be drinking a cup of hot tea and will suddenly fall asleep and end up scalding myself. Likewise, I can fall asleep eating my dinner and wake up to find my head in my plate, not something I want to do if the dinner is awash with gravy! It’s not a good look I can tell you and it contributes nothing to the condition of my hair. I have even fallen asleep on the toilet which is not too disastrous providing it is my own toilet but it is not something I would want to do in a public toilet particularly as I try not to touch anything with any part of my body and all of this whilst holding my trouser legs clear of the floor and my underwear clear of the imminent waterfall.
All of this means that I have to assume a similar stance to that of a ski jumper on one of those very high contraptions that seem to throw the skier high into the air before landing safely and ready to negotiate the slalom. Fortunately the public toilets in our locality have done away with the slaloms as they felt people were taking too long to negotiate them. But the funniest part of all of this is when I fall asleep while someone is talking to me as I can wake up just as suddenly and I then catch the look on their face as, opened mouthed, I can see they are thinking, blimey, am I that boring? We often have guest speakers at our branch meetings and they have to be warned that some of us might just doze off but that it is in no way a reflection on their talk. Although between you and me…
Another symptom that can be quite dangerous is where a person freezes to the point where they cannot move forwards or backwards and this can happen anywhere such as while crossing a road. It can even happen when a person is cleaning their teeth. On one of our Parkinson holidays one of our group froze while carrying a tray with his breakfast and he couldn’t move forwards or backwards. Another symptom is a sudden drop in blood pressure which is something I get quite frequently and this can cause me to fall and I also have very poor co-ordination and poor dexterity as I struggle with buttons and trying to put on a necklace is a nightmare. Today, I have written about some of the ways that having Parkinson’s has affected me but tomorrow, I will try to write about the affect it has had on my relationship with my family.
To be continued
Comments
Esther | April 17, 2012 - 08:09
My first thought; is 'I hope that this lady is claiming all her benefit entitlements....DLA/AA etc. It's frightening how many folk miss out on fiancial support with non-means benefit entitlements.
I thought that the way you wrote was informative; we all need to understand more so we can then understand instead of being frightened.
Are you considering writing a book that might assist so many people not only the person who is coping/facing such frightening changes in their lives. I hope you keep going with your project.....not a ounce of self pity in your writing. Thank you.
jolono | April 17, 2012 - 08:27
Moya, I found this fascinating and once again very informative. I was one of those people who thought Parkinsons was all about hand tremors, never realised it was much more than that, so you have educated me. As always you write with such humour even when the subject could be rather dark! Look forward to more tommorow.
I always wondered why your posts were at silly o'clock. Now I know!
Edenfalls | April 17, 2012 - 14:09
Hi Moya, read yesterdays Post and then todays. Like jolono I had no idea about this terrible illness. Thank you for bringing this to our attention. It's just amazing how people cope in such difficult circumstances and with such humour. Not sure i could!
Rhiannonw | April 17, 2012 - 14:18
Yes, thank you for getting this written. I have known two people with Parkinson's, one has his condition fairly well controlled, but I know that all he does - and he manages to do a lot, work, family, even helping others - is with great unseen effort. The other lady, struggled always with medication helping one aspect but making other aspects worse, and moving between different regimes to try to find better drug balance for her. I'm glad that your group are able to be friendly and supportive to each other. You do have an ability to write very clearly and in such a way that is easy to read. Rhiannon
Stan | April 17, 2012 - 19:59
Thanks for posting this, Moya. I know myself just how certain conditions can be misunderstood - and this certainly told me things that I didn't know and I'm glad I now know.
The other thing that shines through this, Moya - as in most of what you write - is your sense of humour. That's so important. Your description of using the toilet had me laughing out loud... and then immediately thinking 'I shouldn't be laughing at this.' But I know there was a smile on your lips as you wrote it... and good for you for approaching it in that way.
Look forward to the next instalment... :)
Denzella | April 17, 2012 - 20:07
Hello Esther,
Thank you for reading and commenting. But, no, I am not thinking of writing a book, there are people better qualified than me to do that.
The only reason I have been posting is that our branch usually do something to raise awareness and funds for research but because our Chairman is recovering from a heart operation and as his wife is our secretary, it has not been possible for her to organize anything so I thought at least I could contribute in some small way by using this site to raise awareness.
I thank you once again for taking the trouble to read and to comment.
Moya
Denzella | April 17, 2012 - 20:14
Hello Jolono,
Thank you for reading and commenting. If I have contributed in any way to raising awareness then I have achieved what I set out to do. Not for my sake but for all the people who have it worse than I do or have had it from a young age.
Thanks once again for reading and commenting.
Moya
Denzella | April 17, 2012 - 20:19
Hello Edenfalls,
Thank you for reading and taking the trouble to comment.
I now feel justified in posting this but I was none too sure that it was the right thing to do as I thought it might sound like I was bleating and I would hate that.
Thanks once again.
Moya
Denzella | April 17, 2012 - 20:32
Hello Rhiannonw,
Thank you for taking the trouble to read and comment on this. I know people just like the two people you describe. My drug regime is constantly being changed because one thing seems to upset another. I am due to see my Consultant next week and I am hoping that no more tablets will be added to those I already take.
When ordering my tablets now, there are so many that I have asked if it is possible to have them gift wrapped!
Thanks once again,
Moya
Denzella | April 17, 2012 - 20:44
Hello Stan,
And thank you too for reading and commenting. I just felt I had to do something this week that would contribute in some small way to raise awareness of the condition. Not for me but for all the people who have it far worse than I do or who have had it from a much younger age.
Glad you enjoyed my toilet description...well, you've got to have a laugh otherwise what's the point in being alive?
Moya x
Linda Wigzell Cress | April 17, 2012 - 22:35
Hi Moya. I have just staggered up the stairs to put my Palace hat on so I can take it off to you. And I imagine what you have so light heartedly described here is just the half of it. Think I'll keep the hat downstairs for the rest of the week!
Linda
Denzella | April 18, 2012 - 07:26
Hello Linda,
Oh, bless you! You know as I do, sadly, the effects Parkinson's can have on a person's life as you have had to witness with your lovely Dad. I hope he is not suffering too much and the home is still meeting his needs and that you are happy with the way he is being looked after.
One hears such terrible stories that it makes one feel afraid almost to go into hospital or into a home.
One of our members had a terrible experience and there is a court case pending.
Thanks for reading and commenting. I should put the hat back in its box as we don't want it getting dusty. Who knows when you might be recalled to the Palace and need it again?
Love to you and your Dad.
Moya x
Silver Spun Sand | April 18, 2012 - 07:47
Hi there, Moya;-)
When I first read this, yesterday, before I read it to my husband, I knew exactly what he would say, and when I did read it to him, his words were 'It could have been me writing that'.
You describe, so accurately, many of his symptoms. Just recently several glasses and cups have fallen victim to his 'sudden onset sleep'...so much so, that he now only uses plastic glasses, bless him.
As to his drug regime, he recently had to come off one of them as they caused him to be dangerously anaemic... So much so that he was rushed to hospital for several blood transfusions. The culprit was one called Stalevo. He is now on Sinemet and Roprinirole. They are not so effective, unfortunately, and he is constantly juggling the timing of them. As you pointed out, as time goes by, the effectiveness of medication decreases, and he is now on 20 tablets a day.
Like you, we just live day to day, and are thankful for the good times, and the laughs that we have, which are many. Yes, there are the bad times too, but it's reading wonderful accounts like yours that keeps us going. We're all in this together, I guess, so many thanks again for posting these little snippets of your life;-)
Tina x
Denzella | April 18, 2012 - 09:05
Hello Tina,
Thank you for reading and commenting. Yes, I have heard of several cases where the drugs have caused major, life threatening problems. As for the number of tablets he takes tell him I take his twenty and raise him five. Only kidding, I will have a count up. All I do know is the package that comes back from the dispensary is big.
I couldn't take Sinemet as it didn't seem to suit me and it made my hair fall out. Something that came as a surprise to my Consultant.
Yes, Tina we are all in this together and thank you for your kind words.
Moya zzzzzzzzz
sue dinum | April 30, 2012 - 17:33
This is very humbling, Moya, and makes one realize how fortunate one is, certainly in my case. I’m not sure I would have the resilience and courage to face each day like your if I were faced with the same set of circumstances. But then again I expect you have to say to yourself... “What choice to I have? What’s the alternative? I might as well get on with it.”
I can only admire you, even more now you have explained what you go through, and to have coped with the cancer on top of all this... Well girl, you’re spunky, I’ll say that. You are an inspiration Moya, and to persevere at the keyboard to get your stuff written up I think is incredible, especially if you have co-ordination problems.
Moving onto next part now...
Trev x
Denzella | May 1, 2012 - 21:50
Hello Trev,
Bless you for your very kind words but there are others in our group that are truly inspirational. I persevere at the keyboard because I seem to have an urgency about getting things written and if I can make people laugh then that is my reward.
Thanks once again
Moya