Something disconcerting happened in the cafe yesterday that is the first time I had experienced.
Due to arthritis and degenerating vertebrae, scoliosis etc and the slowness of signals from my brain to reach my muscles I will often think “Let’s go!” and my body goes “Whaaaaat?” before it reacts.
My friend first noticed it about 6 years ago. We would get to church and it would take a few beats for me first to open the car door then to swing round and stand up. So we had a running joke where, as we turned the corner she would say, “Getting out of car now”, and by the time she had pulled up I had undone the seatbelt, reached for and pulled the car door open. Then I swivelled round and started to heave myself out. A complex set of signals and movements we take for granted.
Now I focus on getting out of vehicles before we stop as a natural thing and just accept it is an effort.
Walking stiffly was the next thing. Sometimes I walked normally, other times my legs were not bendy but would loosen a bit as I kept moving. I bought a fancy folding walking stick to help my balance, but found I couldnt use it with my left arm. It wouldnt co-ordinate with my right leg and was out of sync. No prob in my right hand. I didnt think to tell my doctor, but he noticed my usually smiley face seemed frozen when I was talking to him about my jerking legs in bed. He put me on meds for severe abdominal muscle spasms, plus nightime jerking, mentioned possible Parkinsons but no diagnosis.
My social life was spent mainly within a lovely church, Poplars in Worksop, UK where they just accepted me as I was.
Suddenly I was back in Australia, and going out with my son and family. In a restaurant, sitting next to my teenage grandaughter I couln’t cut my meat, then my left hand would jerk and my food fell off my fork. I felt she was horrified.
When they were walking anywhere I was shuffling stiffly behind. We put it down to old age, but I stopped going out with them and preferred to go to their home. Now it hurts too much to sit long they come to me for short visits. That is all I need. Or my son and I collect a coffee and sit by the water in his comfy car, or on the park bench followed by a walk by the water. This makes me happy and I always take photos so can look at them on my big screen anytime. This year’s calendar coming up!
Two Xmases ago when both sons and families visited on separate occasions I was so excited but found it really hard to speak, and move my face. My younger son, who was only used to seeing me animated was so shocked. Now he has questioned me about Parkinsons, was I sure I had it and so on. I rarely see him. A friend said she thought he couldnt cope. He already has two children with cystic fibrosis.
My long-term closest friends here are all dealing with their own debilitating health issues. We are quite a distance apart and none of us able to just hop in the car and drive any more but we are there for each other.
My current social life has been mainly within the security of Parkinsons classes including dance and art, but my Plus issues; vision,spine, fibromyalgia are adding extra challenges.
I am looking at options for mental stimulation or relaxation and have committed myself to a yoga style meditaion class for people who dont want to do yoga. The lovely coach has assured me she will help get me up from the floor after.
I rarely go out without a friend or carer, but when I am with them, and my trusty rollater called Harley, I am too busy to look for people’s reactions. At the shop counter I will grab a handful of coins from my purse, say “I have Parkinsons”, or “I cant see”, open my hand and let them choose the coins “or we will be here all day”. It is the most comfortable option. I am in control. Sort of.
My meds held the jerking and shakes pretty much in check and when I eat out I order finger food or something that can be eaten with a spoon or chopsticks. On the whole I have got it pretty much covered.
I find if I say up front I have Parkinsons people then accept any odd thing without judgement.
So yesterday came as a shock in the cafe when I grabbed the back of my chair and the corner of the table to lever myself up and this old dame gave me such a look of disgust. Then she glanced down at my (rather fancy) white rollater, and I think the penny dropped. Next time I will just punch her and claim diminished responsibility. There always has to be an upside.
As for the old lady on the next table, as I said to Angela, ‘ She obviously doesn’t know Im famous.”
“”Obviously”, said Ang pragmatically.
ps Remind me to tell you about my Letter From the Queen.