Jeez, I never thought I'd get PD but here I am, trying to adapt to the reality. I was a very early leader of an online community called The WELL (1986) so I'm comfortable using this discussion platform where the users help and support one another. I need a place like this with people like y'all.
Guess who just landed...ME.: Jeez, I never... - Cure Parkinson's
Guess who just landed...ME.
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I like the expression "just landed". Yep, right in the middle of a whole new life. I didn't tell anyone for months, then just family. Now 18 months later everyone knows. I get great support. I was put on medication and pretty much lost all this year with no energy. Now nearly off it and feeling great. I have just come into an inheritance so am lucky to be able to spend some money on my body. I have just purchased the Vielight Gamma. Here goes a new experiment.
I wish you well, this is a great forum.
Hi, Eliza-Jane
I'm glad to hear you are able to invest more in your healthy. Physical training and activity are more important than ever for me. And this is a nice meeting place for us and our caregivers. Having PD is a bit like moving to a different country and having to deal with the unfamiliar.
Cheers!
Cliff
Welcome!
Welcome, cfig. Unlike many, I was relieved to get my diagnosis because it meant there was medication to relive my symptoms. Don't be afraid to use levodopa for relief, in prescription or herbal form.
Herbal form? Tell me more, park-bear. And thanks for responding.
The herbal form is known as mucuna and is readily available from supplement suppliers. The upside is it is natural (yay!), the downside is levodopa tends to cause nausea. Hence the invention of Sinemet: Sin = without, in Spanish, and emet = emesis, i.e. upchucking.
And you're welcome. Good to have fellow techies at our little exclusive club of 1%'ers (% of population who has PD)
A warm welcome to you, cfig. Did you just get diagnosed?
Hi, Beckey
About 20 years ago my sense of smell went on the fritz. At first I started having what I called "olfactory hallucinations" - smelling things (mostly bad things) that weren't there. Over the year I got used to it. Then I started feeling dumber in doing my work, which was online. I could not figure it out. Then I got was proved to be a full-blown attack of troubling symptoms and was referred to a neurologist and movement specialist who suggested I begin taking Sinemet. That was about 3 years ago. I held off, not wanting to concede that it was PD. I went in and out of feeling "parkinsonian" until about a year ago when I accepted the diagnosis. And here I am, having my good and bad times while still putting in a steady - if often painful - 20 hours of work per week.
cfig you are very welcome. It does take a while to sink in, that you have PD. The latest research seems to suggest that your PD speed of progress may be effected by your gut bacteria mix, so such links are worth investigating.
Wellcome to the club! Another resource I like - outthinkingparkinsons.com/
If it helps at all I felt better a year after diagnosis, nothing to do with meds but more my mental space
welcome cfig I think we are in for the ride of our lives over the next few years
The first year was hard for me. But after I accepted the fact that PD was here to stay, but my happiness depended on me, I chose to be happy again. That made a huge difference on me. Attitude and exercise are my greatest tools for dealing with this. Staying socially active is critical in my opinion. And it's scary at times, not knowing how your symptoms will be. But we have to push ourselves to still LIVE! This is not a death sentence and should not be treated as such. I find yoga to be very helpful, and I still do step aerobics (good for the brain too!). We all must find the path that works for us, Don't back into a corner, keep searching for your strategy. This disease is very personal, as we all know!
Hi, Jebbie12. Thanks for responding. Trying to keep my chin up, as they say. Sometimes it takes extra effort, but we all here know the drill. Our experience of life from here on depends largely on our initiative and determination even when our body and mind refuse to cooperate fully.
I hope to see my 12 grandchildren grow up with a participative PopPop.
Welcome! I believe in healing gut where it connects w/ the brain . There's an interesting group in FB drinking fermented cabbage juice . Worth looking , observing , learning from. Exposing the lies, candida, Weaponizing Fungus mutinizing mutancy . Good luck! Still going through it to observe.
I work in the Whole Foods across the street. We sell a lot of gut-conditioning tonics and I'm working my way into trying them. I have always liked drinking the vinegar left at the bottom of the salad bowl so I don't know why I've resisted drinking a Gut Shot (tm) for my whole health, but thanks for providing me with more impetus, ASIA8.
I would of never believed 8 years ago that I would hear " You have Parkinson's Disease". I was in denial for a long time and sometimes I still do not believe I have PD ,but reality sets in. I am trying to live my life to the fullest. One day at a time. I recommend reading about PD and educate yourself and don't be afraid to ask questions. Nobody knows YOU better than you. What works for one may not work for you.Best wishes .