Its curious isn't it, that movement becomes so unpredictable, so inconsistent, and oh so frustrating....
One minute my foot drags, I have poor balance, feel physically majorly impaired the next I am twirling to Gloria Gaynor like some 80's studio 54 chick complete with boob tube. (sequined of course) Hell now thats sometimes hard to get my head around, never mind those close to me. "Well can she walk or can't she? and whoa and what's with the sudden dancing??" You can see their point, I am as confused as it must look.
Its a bit like airports, I always book assisted transfer, but sometimes I can cope ok. On occasion I have managed to board without but then on arrival at my destination have to concede and put myself in the hands of the ground staff. I often think that those who may have loosely paid attention must think, hang on she boarded ok so what's with the wheels??
Does what people think matter? Well of course we all say 'no' with a 'I am who I am' conviction, but actually the reality for me is, yes I am a bit bothered. You know the pride thingy.
So when we talk about awareness for me its about trying to help people understand why I don't read any more, why I struggle to keep my clothes tidy, why sometimes I shy away from communication, why I have to fill my life with so much and why one minute I tap dance and the next I trip.
Yes I as my husbands carer can relate to what you are saying, even some of our closest friends do not see what its like and how unpredictable the symptoms present at varing times throughout the day,.No it doesn't matter what people think but it would help if they understood. Thanks for sharing x
I seem to have lost the ability to follow plots and characters, I forget what I have read, and I get bored easily. I was never an adult book worm although as a child I lived in books. However it is something I won't be counting on as a solution to keeping my life alive when its a lot tougher. Fortunately I have many other things on that list.
I hear you H-H, my daughter has TBI and has same problem. She was going to school and had to have her text books read to her. Also has a talking computer too. I have PD and can still read at 71 but have trouble remembering if I read a book or not. So can read the same one over and over and realize 3/4 through that I have read it. Also I love it when people catch me walkiing to the bathroom and say, "Wow, you can walk again!" and I have to explain it's temporary! Why bother
I seem to have lost the ability to follow plots and characters, I forget what I have read, and I get bored easily. I was never an adult book worm although as a child I lived in books. However it is something I won't be counting on as a solution to keeping my life alive when its a lot tougher. Fortunately I have many other things on that list.
Hi colleen,i know exactly where your coming from some days i can leap over a fence with one hand and other day i can hardly straight my back and crouch over with severe tremor,this is why i get so frustrated with neurologists when we have our 6 month assessments,they usually ask you to perform basic tests which have very little relevance in looking at the illness as a whole,the sheer unpredictability of the thing and this is why,in my opinion,we very rarely get the right treatment because they arent looking at the bigger picture,i have requested a refferal to a movement disorder specialist in newcastle who i see on 26th sept because i just felt i was getting nowhere with my current neuro.
This is where tech / smart phones benefit patients.
Make a short video each time you experience a new or prolonged mobility issue. Show the short video to the Neurologist or movement disorder specialist. Proof positive this happened then. Help your doctors help you.
i am going to ask him what are thes tablets supposed to be doing and i shll also ask him for a refferal to a movembt specialist - i hope they have them here in france
sorry i meant to add,you are spot on when you say its what you cant see thats one of the big problems,unless the neuro has vast knowledge of PD how can they possibly understand,the answer,probably a neuro with PD!!
I can relate to what you are saying. I have exactly the same problem, One night not too long ago it was my anniverary. I was feeling good and my meds were working so my husband and I went out dancing. I ran into some people from my church. The next day I saw one of the ladies from the night before. Here is how the conversation went. "Well you must be tired today,I saw you dancing last night. I guess you are not as sick as you think you are" I felt terrible and hurt.people just do not understand and I get tired of trying to explaine PD.
Exactly and its not their fault either they can't possibly 'get it' as to be honest half the time we don't get it!!! but we can take some steps to help the knowledge process. I did today. leaped into action!!!..... will blog it
Your description was right on the mark...so true! And has any one ever notice that when you go to the Dr those always seem to be your best days? Kind of ironic isn't it.. I used to take my Mom to the Dr and she would do great all through the exam and as soon as we would leave she would fall apart and freeze up... now it happens to me... not tremor one the last few times I went in...balance was great. It's like a light sometimes its on, sometimes its off and our brain has total control of the switch. Just flips it on... off.. on..off ... whenever it wants... It is what it is. Thanks for your great post. So helpful.
These words speak volumes. Those of you that know me remember well - and those of you who do not know me and are perplexed by my motions - maybe this will help you to accept me. I too was once a dancer.
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Hi how fast does PD progress?
Welcome To The Dance
Remain my Friend (slightly tweeked by me )
