I'm still kind of processing this; just numb and flat. At my last visit, my neuro-ophthalmologist told me he wanted me to see my neurologist. I've been seeing one every six months. During my high school years, I had epileptic seizures and was on a low-maintenance dose of meds at the onset of GCA. I began to have auras after a few months since the pred watered down the meds, and I'd been seizure-free for 48 years; meds took care of things.
I didn't feel all of the difficulties I've had of late were simply due to the increase in prednisone: balance issues, abnormal gait, holding on to things to feel steady, dizziness, limb stiffness, head and arm tremors...and then stuttering in speech. The stuttering did it. Plus, everything was challenging, more difficult than it should be. I've been put on Carbidopa-Levodopa to replace the dopamine I'm not making, I learned. There was relief in just getting a diagnosis. I was afraid it was MS, and apparently, I would have been better off if it was. She explained the medication titration and said I'd see her in six weeks or sooner. I'm to call if I have any additional issues with eating for a swallow test with a pathologist. I've been seeing her since 2020, and my husband sees her also; she has my trust.
She called my husband in, and he asked excellent questions. He can call her anytime. I'll still be around, my friends, I still have GCA~!!! I wanted to share this. Please don't feel bad for me with the medical buffet I've been building since age four; 84 is an achievement, my biggest concern is my husband.💞💞💞💞
PS I almost forgot. She felt those three consecutive heavy-duty infusions, at my age and sort of pred-weary, put me over the edge. That was the first time I ever felt like a Senior Citizen. I never got my groove back. When I was 81, it was a piece of cake.
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Grammy80
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Dearest Grammy, this is indeed a blow for you and a great deal for you to get your head around. You clearly have a great team around you to support and care for you. Your husband is a marvel! People here will feel honoured that you have shared this news-thank you. Sending lots of love across the miles 💕🙏.
Dear Grammy,I could never feel anything but admiration, respect and awe for someone who's navigated all the challenges you have had to over the years.
You're an inspiration, and someone I look up to for your determination and resilience.
You now have another challenge at your doorstep, but I know that once you've processed everything, you'll face it with that same determination and resilience.
This is going to require yet another 'reset', with a new journey of discovery ahead.
I'm sending you lots of love and wishing you an easy transition as you learn to manage and live with this new diagnosis.
I'm blushing...I was a heap of ashes in 2019 and all of you really built much of the strength I have today, sincerely. Printed and posted...fridge and bedroom this time.x💞
Morning Grammy, an inspiration you have and always will be to us all. This is as DL says a real b.... r to suddenly get thrust upon you. Your support there sound fantastic and you know someone will be here if/when you want to vent. Lots of hugs and best wishes to you. 🫂🫂😘😘
Bcol, I know....and I'm not going anywhere. I might not mke it on as frequently but I'll be here. That is not just because GCA hasn't gone anywhere...'cause I need you all and have to keep tabs on all of you who have done so much for me....so much.💞
So sorry to hear this Grammy. My brother was diagnosed with Parkinson’s a few years ago. It’s not easy to deal with but you now know what you’re dealing with which is half the battle. Big hugs. 🫂 xx
I wish your brother well, Highlandtiger ! I'm still learning aand knnow I'll get much from HU site too...I was so happy to see that and know I'll get as much from that group as my family at PMRGCAuk.....big hugs.💞
Sorry to hear that. But you will deal with it as regally as you have all the rest. I hope the medication does the job - and there have been all sorts of changes in management recently. Hugs xxxx
Yo! Life can sometimes take a less than satisfactory turn. Best wishes in dealing with it. 🌼Here is a link to a group of UK folks, all affected by Parkinsons to varying degrees. Each of their podcasts deals with an aspect of the condition. You can chose what you might feel relevant to you..........menu in top right hand corner.
What a rotten thing to happen. I have several friends with Parkinsons. One thing if you are taking Carbidopa-Levodopa you should avoid a high protein diet which is rather different to GCA and PMR with steroids. You may have already been told that.
Thanks...yes, so I've been trying ....did a little yesterday....to put together a simple healthy 'for me' diet and make sure OH eats well. Better organized days with some exercise in the garage too, they say it helps. I've ordered some booklets from Michael Fox Foundation too.💞
I'm so sorry to learn of this new and unwelcome challenge. There's a book by Norman Doidge, The Brain's Way of Healing, which has chapters on various difficult diseases, certainly one about Parkinsons. It's available as an audio book. Not to give you false hope, but a method of dealing with the challenges of illness. 🌺
Big hugs , it's great to have an answer but I'm sorry the answer was another hard to manage health condition.We are here for you whatever you are dealing with , we aren't choosy! 😆😆😆
Oh words fail me at the moment that you should have this to deal with on top of the GCA. So you to be more concerned for your husband than yourself. Sending much love🫂
Where would I be without this support group. No, you are so much more than that. When GCA hit, I'd never heard of it and came to learn there were about a handful of folks who had in the States. Yikes, that was scary and then I found HU and PMRGCAuk; you explained my illness and yours, you educated me, you supported me, you made me an advocate for myself with my doctors and on top of it all; you gave me a place to vent and even hugged me. It was like Christmas on steroids....forgive the pun. I hug everyone of you and am so proud to be part of this community that has one goal...helping people. Love xoxo 💞💞
So sorry to hear all this. You are and will continue to be an inspiration! It’s who you are! I know you will get your head around all this and find a way forward. Good that you have supportive medical staff. Lots of virtual hugs for you and hubby as you traverse this together. Xx💐
OMG,so very,very sad at this awful news.When will you get a break eh?It would have floored the majority of us to get a diagnosis like this on top of everything else you have.Mrs Miracle,that’s what you are !!Sending you and OH all the love and healing thoughts that you deserve.Rooting for you dear Grammy.xx😪❤️🐈🐈🐈
Im so sorry to hear this news Grammy and hope you will get as much love and support from the Parkinson’s forum as we all get from this one. You are an indomitable lady and I admire you for your strength and humour through these shitty times. Lots of love ❤️
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