So I bleat on about invisible symptoms all the time. Why? because they are the ones that affect me most and the hardest for me to get my head around never mind explain. So today instead of endless typing about it I decided to do something about it, in the spirit of every little helps.
1. I asked Steve and Linda from PD chat room to take ownership of a project idea :: A film submission for the WPC competition which is all about "what you don't see' If you would like to take part please speak to them! parkinsonschatroom.com
2. I suggested to Tina Walker and Alan Robertson from the UK that they start a facebook page for patients to drop in their insights and designed to help healthcare professionals understand more.
Please support both initiatives if you fell appropriate and you can.
Then I ate a bag of maltesers and listened to The Clash
All is good for a Monday
15 Replies
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I do think many of us get these invisible symptoms I have to agree they are difficult to cope with.
i.e. This morning eating my porridge it tasted like raw meat (that smell). Coping with the stiffness in a morning is fine, I know it will go away to some extent, but usually these phantom problems can go on for days. Just something to live with I suppose.
PD is a race of the physical and mental within me. The hardest part of the race is the within me. The me I am losing day by day as PD is a life changer inside and out. PD is a shadow that follows me day in and day out. Freedom comes only in my sleep. So very painful to
know and see the look of a loved one that I fear cannot understand what I am going through. My communication in thoughts don't match the words coming out of my mouth.
Going to speak to tina tomorrow about what we can set up as i,m off to a puk information day at 10.30.hopefully i can ask some questions there as there is a consultant as one of the speakers if i get the chance.
Over the years I have had many 'what you don't see' ailments and my GP has arranged countless xrays - the results of which were all
ok. I find it embarrassing when asked 'how's the pain in your stomach/neck/chest/hand now? And have to reply 'they're ok now" This flitting of pain from one area to another makes it almost impossible to describe to others so I've given up trying.
I know my father goes through this as well. The problem seems to me to be that the brain can create pain messages anywhere in your body without there being a reason other than PD. I liken it to the "Phantom Pain" that amputees get in a limb that is no longer there. It doesn't mean that the pain isn't real, it just means that the brain is sending out faulty signals to pain receptors.
I call this "Phantom Roving Pain" because the brain can cause pain anywhere at anytime in the body for a person with PD. It is sort of like having faulty wiring. Sometimes a body part moves well-sometimes it doesn't. Sometimes you have extreme pain in one area-then it moves someplace else.
I don't know if it helps, but you are not imagining it, and it happens to others. It is impossible to tell if there is something wrong, or if the brain is sending the wrong message. I am sure you, your Dr and your loved ones would rather do the tests and rule out the possibility of a problem, than to ignore it, and give a serious problem a chance to develop.
If you explain it this way, maybe they can understand....
I have what I call the triangle of torture: my lower left ab and both knees. When one hurts they all chime in. The PD chimes in and adds trapped gas, trapped water, and so forth. I'm all for this project you suggest. And for us non-UK folks, H-H, what's that a bag of you ate???
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