Why GCA went haywire?... Today I was diagnosed wi... - PMRGCAuk

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Why GCA went haywire?... Today I was diagnosed with Parkinson's Disease~

Grammy80 profile image
Grammy80
β€’49 Replies

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.πŸ’žπŸ’žπŸ’žπŸ’ž

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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49 Replies
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SheffieldJane profile image
SheffieldJane

πŸ’–πŸ’–πŸ’–πŸ’–πŸ’–πŸ’–πŸ’– no wonder you have been feeling out of kilter. Sending my support and hugs.

Grammy80 profile image
Grammy80β€’ in reply toSheffieldJane

xπŸ’žπŸ’ž

123-go profile image
123-go

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 πŸ’•πŸ™.

Grammy80 profile image
Grammy80β€’ in reply to123-go

πŸ™πŸΌπŸ’žπŸ’ž

Kendrew profile image
Kendrew

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.

Charlie Mackesy wisdom
Grammy80 profile image
Grammy80β€’ in reply toKendrew

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.xπŸ’ž

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

So sorry my friend… what a bu@@er… as if you didn’t have enough to cope with. Hopefully you will get all the help you need for you and your husband.

Sending love and support.. πŸŒΈπŸ’•πŸ’•

Grammy80 profile image
Grammy80β€’ in reply toDorsetLady

Most welcome and sincerely felt. I got the lovve and the support. πŸ’žπŸ’ž

powerwalk profile image
powerwalk

Big hugs and best of wishes Grammy as you process all of this. πŸ’πŸ’ x

Grammy80 profile image
Grammy80β€’ in reply topowerwalk

πŸ’žπŸ’ž

Rugger profile image
Rugger

You are an inspiration, the way you are dealing with whatever comes your way. You will now have a double honours degree in medication titration!

It's so good to know that you have faith in your doctors and that they are including your husband.

Much love to you on this next leg of the journey. 🌻 😘

Grammy80 profile image
Grammy80β€’ in reply toRugger

TITRATION AND TAPERATION EXPERT, M.D., F.A.C.S., Ph. D. .........not!xxπŸ’ž

Bcol profile image
Bcol

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. πŸ«‚πŸ«‚πŸ˜˜πŸ˜˜

Grammy80 profile image
Grammy80β€’ in reply toBcol

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.πŸ’ž

Koalajane profile image
Koalajane

Grammy, big hugs to you, you wonderful lady.

Thinking of you and hubby and stay strong xx

Grammy80 profile image
Grammy80β€’ in reply toKoalajane

πŸ’žπŸ’ž

Highlandtiger profile image
Highlandtiger

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. πŸ«‚ xx

Grammy80 profile image
Grammy80β€’ in reply toHighlandtiger

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.πŸ’ž

PMRpro profile image
PMRproAmbassador

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

Grammy80 profile image
Grammy80β€’ in reply toPMRpro

May I always live up to your expectatioons.,,,I'll try ! I've got a really good doctor, PMRpro, I think we will see posittive changes in time. xxxx πŸ’ž

montebello profile image
montebello

Oh Gees, Grammy. I hate to hear this for you but so glad you continue to share yourself with us. You're amongst love here.

Grammy80 profile image
Grammy80β€’ in reply tomontebello

πŸ’žπŸ’ž

Sillydogsmum profile image
Sillydogsmum

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.

moversandshakerspodcast.com/

Grammy80 profile image
Grammy80β€’ in reply toSillydogsmum

Sounds great!!!,.,...neither fingers or eyes are too cooperative at the moment. I've found HU Parkinson's too....maybe tomorrow.πŸ’ž

piglette profile image
piglette

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.

Grammy80 profile image
Grammy80β€’ in reply topiglette

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.πŸ’ž

HeronNS profile image
HeronNS

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. 🌺

Blearyeyed profile image
Blearyeyed

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! πŸ˜†πŸ˜†πŸ˜†

Just wanted to give you a giggle, hugs , Bee

Grammy80 profile image
Grammy80β€’ in reply toBlearyeyed

Lucky for me......πŸ’ž

Moaningxcat profile image
Moaningxcat

I’m so sorry to hear about this additional diagnosis, Grammy. You are much loved and admired and I hope this gives you strength and comfort.🍁🌻🫢

Grammy80 profile image
Grammy80β€’ in reply toMoaningxcat

πŸ’žπŸ’ž

Fatsiajaponica profile image
Fatsiajaponica

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 loveπŸ«‚

Grammy80 profile image
Grammy80β€’ in reply toFatsiajaponica

πŸ’žπŸ’ž

Grammy80 profile image
Grammy80β€’ in reply toFatsiajaponica

πŸ’žπŸ’ž

HeronNS profile image
HeronNS

healthunlocked.com/cure-par...

Grammy80 profile image
Grammy80β€’ in reply toHeronNS

The last thing I did before going to bed last night was see if HU had a Parkinsons group...how could I have even wondered.πŸ’ž

PMRpro profile image
PMRproAmbassadorβ€’ in reply toGrammy80

Other groups are not often like this one ...

HeronNS profile image
HeronNSβ€’ in reply toGrammy80

I noticed they seem tohave a lot of posts discussing various medications, so could be interesting. Good Luck! πŸ€

Grammy80 profile image
Grammy80

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 πŸ’žπŸ’ž

Nextoneplease profile image
Nextoneplease

Just read this post dear Grammy and am so sorry to hear your news. I guess it must make sense of a few things.. πŸ€”

Your outlook as ever is amazing. I’m so glad you have good and reliable docs too 😊

Sending you hugs dear girl πŸ€—πŸ€— xx

Grammy80 profile image
Grammy80β€’ in reply toNextoneplease

xxπŸ’ž

Jackoh profile image
Jackoh

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. XxπŸ’

Grammy80 profile image
Grammy80β€’ in reply toJackoh

xxπŸ’ž

Angelsmummy profile image
Angelsmummy

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.xxπŸ˜ͺ❀️🐈🐈🐈

Pixix profile image
Pixix

oh, no! Sending huge hugs & very best wishes, as you process this news. It’s not fair that youhave that, as well. S xx

Zebedee44 profile image
Zebedee44

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 ❀️

Grammy80 profile image
Grammy80β€’ in reply toZebedee44

Love your choice of words...πŸ˜‚πŸ˜…πŸ˜‚ how appropriate. I think we may have a juggling act on our hands.πŸ’ž

Macas profile image
Macas

Dear Grammy I admire your strength and humour and send you love and hugs

Maryx

Grammy80 profile image
Grammy80

πŸ’ž

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