One thing People With Parkinsons (PWP) have in common seems to be the constant juggling of medications to control symptoms to enable us to have a normal as possible life and remaining as independent as possible, for as long as possible. The stories one often hear of PWP being accused of being drunk or on some illegal drug sadly can be a reality due to the side effects of this horrible illness. On bad days I cannot totally control the shaking of my left hand and leg and this is exaggerated if under any kind of emotional stress or simply not being able to have a decent nights sleep.
I belong to various Parkinsons chat/support groups which have members world wide and lack of sleep is a common thread. This can be caused by the inability to switch off or muscle cramping and pain. In my case as with other PWP its just a waste of time staying in bed so if I am still awake 2 hours after going to bed I give up and come into the lounge. Soon after being diagnosed a couple of years ago I actually went 2 months without going to bed at all! I don`t really know what the cause was but to me it was not a big problem. I substituted my comfy bed for a reclining chair but I know my son was a bit concerned by it. However in time I forced myself to go to bed and get back as much as possible into a `normal` routine. It is not a problem now, I just know when I have no hope of sleeping and come into the lounge and watch a late night film or browse facebook and see who else is awake!!
The pain I frequently feel particularly at night is difficult to differentiate between Parkinson's or the cancer journey I am currently on. My oncologist tells me I must expect some pain and discomfort following the Whipple procedure which is major surgery after all, but Parkinson's can cause unexplained pain and discomfort also still. I have the unenviable choice of being able to blame one or both inflections!! I remember my son saying to me pops I cant decide if you are being brave or just stubborn!! Well I guess if I am honest I am more stubborn than brave, the 8 days post cancer surgery in intensive care were hell on earth but I got through it and slowly got back to being a full time carer for my young adult daughter, with no external help coming in. Luckily we live in a bungalow anyway which made life easier but how I was itching to get the mower out and cut the lawns! I probably did that before I should but that's where my stubborn streak won over my sensible streak! Actually I have said that my two Jack Russell's helped me recover, after all they still need to be walked and yes it was slow and little distance to begin with but I am convinced this daily routine has helped in my recovery.
I go for another scan in a few weeks as the oncologist is a bit concerned about some small changes he is seeing in each scan, I know they could not get all the infected lymph nodes out hence my 6 months chemo which they hoped would mop things up. However bile duct cancer is a nasty beast and very few actually totally beat it, so it is good i am being watched so closely.
I will update again soon,
Look after yourselves and each other, you do not know what is around the corner.
Tony in Cornwall.
borninkernow@outlook.com
