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Topic It's the progression of the disease, Sweetie... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2018.01.02 20:06
We had a whole houseful over the holidays. Seven adults and two children, 8 and 13. It was hectic and tiring, but it was great having the entire family here under one roof.

However, I kept an eagle eye on Carl. So much so after everyone left on Saturday, I saw him swaying badly in the kitchen, with his tongue out...I said, "Are you ok? Just tired? Can I help?"

The answer kind of shocked me..."It's the progression of the disease, Sweetie. We have to accept I am not going to improve, only get worse. We have to do all we can as long as we can. I have accepted that and I will keep fighting, but things ARE changing in our world. I wish they weren't, but they are."

I catch him reading about PD online late at night. I ask how he is, he responds, then I walk away to let him focus. He has told me that when he cannot sleep at night, it often helps him fall asleep by staring into the small screen of his iPhone while reading about PD. Makes me nuts to have the screen of electronics, he goes downstairs for awhile.

I guess maybe I shouldn't be surprised that he knows what he is facing, but it was a shock to hear him put it in words. He understands what is happening on a deeper level than I.

By LOHENGR1N On 2018.01.02 23:44
Ah Yes late night introspection and reflection. I think there are many of Us like Carl who peruse the web late at night, trying to arm ourselves with information. Trying to get a handle on what is happening with and to Us. Myself my balance is shot. I can't stand still, I sway, I bob and weave, walking is quite the adventure. I shuffle then fast lurching steps grab a door casing hold on swaying and weaving and begin over, bob, weave, shuffle and lurching about. This action really doesn't respond to medication and most physical therapy only really helps you to look for and avoid hazards (what to watch out for to avoid falls) Not much good when your body betrays you and is the main culprit in the falls. To put a name to it it's Postural Instability ( retropulsion the inability to prevent a fall backwards ). I knew of this problem but didn't understand the disabling effect it has on Us. Even when sitting down the action of backing to sit I lose any feeling of control and it is almost a flop into the chair. At times if the seat is low I even get the feeling one has on amusement park ride when all of a sudden you reverse direction. (that hollow feeling in the gut or lower back). Makes me rethink of some of the problems others have posted about loved ones trouble getting into chairs. So We read, we keep fighting and P.D. keeps progressing.

Maybe it's a good thing I dislocated my shoulder in a fall a couple months ago so I can't throttle neighbors with good intentions saying you need to walk more to strengthen your legs! (maybe I'll practice primal screams to respond) I never stopped exercising since diagnosis but they don't understand heck We patients can't really understand unless it happens to us. Well I've gone on a bit here and I'm about typed out so I'll join the other Parkies surfing the web and learn. (sad thing is there were many more names of friends with P.D. on my friends list lighting up the night before, silently one by one the names those firebrands Who inhabited the dark nights, who We could rail against the disease with who could tell irreverent jokes with who we could poke fun with. Those others, warriors in this fight, their torches have gone out never to shine again, at times I so miss them.) Well time to see who's left. Hang in there.

By VioletV On 2018.01.04 12:11
thanks for that description of retropulsion. I had not understood why my husband was getting so uncomfortable when I help him sit down in a chair or on the toilet.

I'll bring your description to him at one of his clearer moments and ask him if that is what he is experiencing.


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