Progress
The good, the bad and the frustrating
When you are living with a degenerative brain condition, progress isn’t always a good thing. I had a 2nd appointment with my consultant neurologist last week, 6 months after the last. It has been very clear to me, and soon became clear to him, that in those 6 months my symptoms have progressed.
The tremor in my left arm and leg occurs more frequently and more vigorously. Although it is the most outwardly obvious indication of my condition, it bothers me the least. It isn’t uncomfortable or painful, just a bit of a nuisance. Most times I’m able to make it stop by doing something deliberate with the affected limb. This is obviously easier in some situations than others.
The stiffness in my left hip still persists and about 6 weeks ago my left elbow decided to go on strike too. It started with general stiffness, then pain, then weakness. Now my whole left arm will sometimes seize up, sometimes be sore when moving and pretty much always painful to lift anything with it. This has caused problems in everyday things like cooking, changing the beds and carrying shopping. Sometimes I can’t even lift a cup of tea with my left hand.
Elsewhere I still experience general stiffness although thankfully not all the time. It tends to be worse if I am still for any length of time, my muscles will just start to tense and contract, so I find myself shifting and fidgeting about to try to prevent it happening. My left foot has an extremely annoying habit of the small toes curling under while the big toe reaches back towards me. Bad enough if I’m just sitting in the house, I can just manually put the toes back in place for some momentary relief but if I’m out somewhere wearing shoes I can’t fix it until I stand up or start walking.
The fine motor control on my left hand has also worsened, I’ve frustratingly lost the nuanced movement it takes to put something in or take something out of a pocket. I can get the item and my hand in, but can’t release it then extract only my hand, and then struggle to get the hand back in and can’t grasp the item and get it out again. I find myself either doing cross-body contortions to use my right hand or just giving up and using only right-side pockets.
In positive progress news I’ve now seen the specialist Parkinson’s physiotherapist twice. Once for a very thorough assessment in which I did the usual finger pinching and one-leg standing test but also got deliberately shoved off balance from all directions and had to walk over various obstacles while counting backwards from 31, in 3s. Difficult for me at the best of times. At the 2nd appointment the physio ran me through a series of personally tailored exercises to address my specific areas of difficulty. These are designed to use as full a range of motion as possible, so I pull down the blinds and busy myself lunging while punching the air and twisting up down and sideways in a chair and try not to think about how ridiculous I look.
Progress too from the consultant appointment last week when he agreed it was time to start me on medication. To be fair he would have been happy to discuss it last time but I didn’t feel quite ready. Sadly no progress in NHS procedures, because rather than leaving his consulting room prescription in hand, I have to wait around 2 weeks for his office to write to my GP instructing him to take it forward. Fellow Parkinsonian(?) BBC broadcaster Rory Cellan-Jones wrote about this recently in his newsletter
So more waiting for now, but hopefully next time I’ll have more progress of the positive variety to report on.
Moving to treatment options does sound positive. Hope it does give some benefit.