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