Hello lovely people... I've been in this community a few months just posting a little when I think I've got something which might help someone somewhere.
I was diagnosed in 2016 - with symptoms going back before then as is usual - not on meds yet, just lots of indoor cycling and PD Warrior. I'm 47 with 2 youngish kids and based in the UK. I feel fortunate that so far my progression has been slow - but I had my first cold of the year last week and by the weekend I felt like I was going mad!
My guesses include - not having done exercise for a few days, coupled with half term holiday meaning I was dealing with unexpected timetables/kids needs etc. By Friday night I was very anxious and then woke up in the middle of the night in a panic attack in which my whole life felt alien and like the walls were closing in. I did have bad sleep before dx but that got better with exercise - but it was never like that. Things are improving a bit - as cold improves, exercise recommences and school holiday is over - but is this a result of getting a cold i.e. an inflammatory illness? I had bacterial meningitis in 2011 after which my symptoms started becoming noticeable and have often wondered if there was a connection although neuro says that's not a mainstream view (and I did have symptoms before that).
Any comments gratefully received - feeling really scared of the next common cold!!!
Thanks for being such a great community.
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Smokeypurple
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I've had similar experiences with cold etc. I think it may have something to do with the absorption and metabolism of the meds we take. I rarely get sick, but when I do my PD symptoms turn into an abusive bully!
It most likely was not the cold alone it was a combination of every thing that happened to you.
I believe what happen to you is your Parkinson's showed you what it can do. Pd can affect your mind as well as your body. Your routine was changed and the anxiety you had cause your PD to act up. I would go see my DR and maybe start some med to help you deal with it the next time it happens.
What you describe happens to me when my meds fail. The smallest thing can set it off. It starts off when my legs start to hurt. I call what i feel pain but is not like any pain i have felt in my 64 year life. As the pain drags on I start getting depressed ,paranoid and start to have a panic attack. I can have a complete meltdown. I take extra meds when i feel it coming and as soon as they kick in (about one hour) i am back to my normal self.
Got it. I knew about the mental changes of course, and guard against, but this crept up on me. I appreciate your posts and will read back to see what you recommend.
I have learned to relax lay down or find something to do that will relax me, The best thing for me is to "play" with my lovely wife and it goes away in less than 5 minutes. Sometimes it comes back but most times it is done.
And with regards to bacterial meningitis, that's a pretty heavy insult to the brain and nervous system so I'm not surprised that most of your symptoms began afterwards.
Thank you! Not sure how I missed that one. It was perhaps a 'so fed up with this disease I'm going to delete my digest before reading' day! Your eplanation confirms some of my hunches.
I think a lot of it is caused by break downs in metabolic processes because of DNA mutations in some systems. Where a gene isn’t functioning well vitamins and nutrients aren’t passing through their processes like they are supposed to to create energy or clean up biproducts or waste. While the body hobbles along normally when you are well or younger, if you are sick or exercise too hard etc it needs to pull resources in to repair damage and fight infection so if cells aren’t getting the nutrients they need the whole system starts breaking down, waste products start circulating in the body and into the brain causing damage. This is just my theory, not sure if it’s right. So if it is when you get a cold or virus you need to support the body as much as possible to stay unstressed, provide extra vitamins, rest.
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