Diagnosed with Parkinson's 9/24/2024

[Grammy80]

Hello, I've been dealing with GCA since 2019 and was only diagnosed after losing sight in my left eye. I live in Indiana, USA, and could find no information, help or support. It seemed no one knew what it was. HU has been a blessing, and that group kept me sane and provided me with all the information I needed and the courage to advocate for myself.

I had a flare of the giant cell arteritis and needed IV treatments of 1250mg per day for three days to save the sight of my right eye, I lost a little. Well, I was just a few months from 84, and after those treatments, which I welcomed, I felt 'old' for the first time....my head always felt about 35-40!! Now I am 84 and feel it.

I was referred to the neurologist I see regularly to monitor seizure meds I take. In my high school years, I had seizures but have been seizure-free for 48 years! As soon as I saw her, she said she knew right away I had Parkinson's. My tremors were pretty bad, I stuttered, had trouble walking, and it seemed I constantly urinated, like a part-time hobby!!

She started me on carbidopa-levodopa, and it is my third day. I'm happy to say I don't know anyone with this disease and though I have looked at some reputable sites; Mayo Clinic and Cleveland Clinic I want to know more.

We are all unique, but I want to do as much as possible to help myself and my husband. My husband has dementia but has been so wonderful and caring. I don't want him to know things that might frighten him. It was interesting when we watched the same videos; he cherry-picked subconsciously only things he could deal with...he didn't get the scary stuff, and I was glad. We have one son and DIL, who are really our rocks. They live in Nova Scotia. The other two sons are close geographically but occasional visitors.

HU has profoundly affected my life with GCA, and I would love to be part of your group.

[park_bear]

Welcome Granny! Of course you are part of our group!

Is the carbidopa-levodopa helping? Be aware that the immediate release version is prescribed by default, but some people do better on timed release versions.

Also there are non medical interventions that do help. Exercise as much as you are able to, for starters. Once you've got your levodopa medication adjusted to your satisfaction, consider other disease modifying interventions such as high dose vitamin B1 and cinnamon. Links and discussion for these things are available when you are ready.

[Grammy80 in reply to park_bear]

Thank you park_bear! I have only been on medication since 9/23, so I don't know. For some reason when I got up this morning, my left heel and ankle are quite painful so I am on tip-toe with the left and using my cane in the house for the first time in over a year or more. Is that part of Parkinson's?

I've looked up diet and how impactful exercise can be. What took 15 minutes before seems to take me an hour!!! I'm going to have to draw up a daily schedule and stick to it...exercise, eating and eating what helps. My husband will help me keep it I hope, I was always the kind of work out person that needed a buddy for accountability, not too much self-discipline! Hopefully, I can do that over the next few days. It is all so new and unknown.

How much B1, I take B12? I like cinnamon, how much? Thanks so much💞

my signature heart for all groups. I didn't look at your bio, but will. If you are UK, I'm six hours behind you and often a night righter for all the wonderful friends I've made in England.

[park_bear in reply to Grammy80]

Oops - I see you are Grammy not Granny - apologies!

Parkinson's can cause so many different symptoms just about anything can be blamed on Parkinson's, and often correctly. One of those symptoms is dystonia - tight muscles - which can cause pain.

My cinnamon report here: healthunlocked.com/cure-par... Suggested dosage toward the end of the report.

Here is a link for high-dose thiamine / vitamin B1: b1parkinsons.org/

It is good to be diligent but it is even more important to be relaxed and not stress. So do not let an exercise program stress you out!

Be aware that the prescription medications from your doctor are for immediate - same day - symptomatic relief, whereas the non-prescription disease modifying interventions require two to four months to take effect.

[Grammy80 in reply to park_bear]

I just read those links...great info, much over my head. Thanks for the added facts regarding the time necessary before positive effects are felt.

I've so much to learn but accept the fact there isn't too much I can control. I'm looking forward to Thursday...big sign on the refrigerator !!! Not to worry about Granny vs Grammy....I answer to almost anything ~almost.💞

[Bolt_Upright]

I'm sorry you had to join our club. If you can, you should join the Zoom calls MBAnderson is so nice to host. You will meet lots of nice people that know about almost everything to do with PD. You WILL be welcome!

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Grammy80 in reply to Bolt_Upright]

Oh, that is wonderful~!! I got so much info and support from the GCA Zoom and we only met once a month. It's so good to talk to folks walking the same journey and follow them; for me it helps to take myself out of 'me' and be involved with others. I'll be there, thanks again💞

[Bolt_Upright in reply to Grammy80]

Awesome!

[Grammy80 in reply to Bolt_Upright]

I just had to say.....I was talking with the Thursday group....and I know it is the beginnning of very fruitful interaction with all of the generous interesting members..... The sharing was awesome~!!!Thanks to all~!💞

[Bolt_Upright in reply to Grammy80]

It was a pleasure having you on the call.

[Grammy80 in reply to Bolt_Upright]

Thanks so much for that.....even though I was in ' DUH and translation mode'...I found it so supportive and see you next time~~!!💞

[Boscoejean]

"Giant cell arteritis (GCA) is an autoimmune vasculitis that can affect the central and peripheral nervous systems. GCA can cause intense inflammation in medium and large-sized blood vessels, and can lead to cerebrovascular disorders, dementia, and neurodegenerative disorders. "

"Giant cell arteritis (GCA) can sometimes be associated with parkinsonism, as a presenting symptom of polymyalgia rheumatica (PMR)"

"Steroid-reversible parkinsonism as presentation of polymyalgia rheumatica

Pieranna Fietta 1, Paolo Manganelli

Abstract

Polymyalgia rheumatica (PMR) is an inflammatory disorder typically affecting elderly people, characterized by pain and stiffness in the neck and in the shoulder and pelvic girdless with prompt clinical response to low doses of corticosteroids. PMR is closely related to giant cell arteritis (GCA), likely sustained by a "subclinical vasculitis". Whereas in GCA both the central and peripheral nervous systems may be involved, only a PMR case of global, steroid-reversible dementia has been hitherto described. We report two elderly patients who abruptly developed, as PMR presenting symptom, an akinetic-rigid parkinsonian syndrome that promptly and completely resolved after corticosteroid treatment."

[Grammy80 in reply to Boscoejean]

Please forgive me, as I a brand new...like a baby born two days ago and just as informed about Parkinson's Disease, Dx on 9/24~! Boscoejean, I see your bio states your husband has PD and you are trying to slow it down. Your response to me is clinically informing, though I've had GCA for 5 years~~~~in looking at other posts of yours, equally as informative, do you give clinical responses all the time and enhance the knowledge of others? I just would like to understand. Thanks~!💞

[Boscoejean in reply to Grammy80]

I would not say I give clinical responses - these are just things that come up when I do a general search

[Ghmac in reply to Boscoejean]

How do they diagnose PMR? Can it be detected in a blood test?

[Grammy80 in reply to Ghmac]

I believe there are about 20% of individuals whose blood tests will show no inflammation markers. The ESR and CRP levels are customarily elevated with both PMR/GCA, but not always. I've not had PMR, just GCA, but know it is usually certain muscle groups. Hop over to PMR/GCAuk and go around the site; ask questions. I've found them to be extremely friendly and helpful over these 5+ years. Many come on wondering. My best💞

[Grammy80]

Thanks for taking the time to respond to me, I appreciate it. I look forward to ALL the information I can get on Parkinson's, my latest addition. Seems like the first thing is that we are all unique and experience the journey in a different way. Like you, I too am trying to do all I can...do my part. Have a good day.💞

[Leafsong66]

Oh Grammy80! I just hopped onto this forum after also being on the PMR/GCA forum for the last year. My Dad has suspected PD and is just going through tests to explore that, at my instigation.

To see you as the first post, has made feel feel that I should be here! I am so sorry that you also had to join this “club” but I love your beautiful attitude towards getting on with things and doing your best to understand how best to deal with it all. May you be given strength and joy for each moment. God bless x

[Grammy80 in reply to Leafsong66]

How kind, thank you, and I'll be thinking of your Dad too. Please keep me posted...my days are unpredictable but will smooth out...don't always get to the computer...when I do, it always helps. xx💞

[Leafsong66]

Thank you ! The official diagnosis has been made for my Dad. It’s both terrifying and a relief to explain his mounting difficulties with mobility, movement and energy.

I feel as if my issues with GCA have prepared me a little for supporting him now on his own health journey.

Have a peaceful and positive day dear Grammy80!

[Grammy80 in reply to Leafsong66]

I think our other chronic illnesses do prepare us for the mindset of acceptance! I am still in 'first grade' here and waiting for my body to respond to meds etc. Leafsong66, I have learned everyone is unique, and there is more focus on slowing progression. The group I attended was helpful and supportive. As a caretaker, you would get many tips, I'm sure. Plus, you have folks you can talk to...discuss back and forth~! Here is the link to the groups on Zoom:

healthunlocked.com/redirect...

or... look back to the post Bolt_Upright wrote to me. I used that link, and one by one, people popped on. You can also see the time zones he so nicely calculated for me....and see if this can fit in your schedule....hope so. You won't be alone, and that helps so much. To you and your Dad...💞

[Grammy80]

I felt the same way, it was such a relief to have a name, even Parkinson's placed as an explanation for all the crazy things I was feeling. At least I could go from here this evening I attended a zoom meeting of several folks with PD and I had everything to gain. I have so many questions and even though I've researched it was really great to talk with them. You may enjoy that as well, they have two zoom meetings per week.... you can think about it of course and I was thinking about your dad.💞 and you.

[Leafsong66]

Thank you so much dear lady! Support and knowledge are mighty aids in this new challenge. Really appreciate your sharing of both. God bless on the road ahead.

[Grammy80 in reply to Leafsong66]

Indeed.....learning bits every day...boy, that last post was a grammar challenge. We all walk together.💞