Anyone from Ireland on here: Can i ask..if... - PSP Association

PSP Association

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Anyone from Ireland on here

Cianodude
Cianodude

Can i ask..if there anyone from Ireland on this forum...my mum has CBD misdiagnosed 5 years ago with parkinsons for 2 years...i feel so isolated as the doctors keep saying its rare and really cannot help with the smallest of things??i have so many questions....

29 Replies
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Hi from the US! The beauty of this forum is that we’re all in a ’similar’ boat, no matter how far away we are from one another. Ask your questions and I’m sure someone will get back to you. Feeling isolated is common and normal. You’re never alone when you have this forum.

❤️ SewBears

SewBears
SewBears in reply to SewBears

Oh dear, I see that you’ve been on this forum for two years and my previous reply sounds silly 🤣

We have a neighborhood website that I belong to for locals. I met a wonderful friend because she was looking for a buddy to visit with her husband who was diagnosed with a similar ailment. We ended up going out on double dates. The neighborhood website discusses everything, handyman projects, pet adoptions and even health care issues. Do you have anything like that available in Ireland?

Cianodude
Cianodude in reply to SewBears

No nothing like that sewbear...ive been told theres oNLY 4 CBD cases in ireland...i have contacted the pspa group but its in Dublin 250 miles away from us

Contact the PSPA, they may have a local group near you.

Cianodude
Cianodude in reply to Heady

Nearest group is 250 miles away..they came to limerick once 9 months ago

Phone support now as COVID will stop all future meetings anyway. Also check out Facebook page.

Hi, we moved from Ireland (Co Waterford) to Wales before I became ill and we are still in the UK. While I don’t have a conclusive diagnosis, several consultants agree it’s CBS or on the CBD spectrum. So quite similar and symptoms are same.

The PSPA has been amazing support for me, giving some answers to the many questions I have, for my wife (carer) and kids too. I think you might find a lot there and possibly, through the PSPA, get info about local support if any.

Because we have thought about returning to Ireland (still considering) I would be interested to find myself too. But the most important aspects — to me at least — are doable online. Support community here and PSPA for all practical suggestions and also for up to date information about symptoms’ management etc. I joined a Zoom forum this week for the first time and was really happy I did. Not least because I found other people struggling with same problems. Often it feels one is alone. But many others go through same.

If there’s anything I can do or offer, contact me

Bo

Cianodude
Cianodude in reply to Boman

Thank bo...mum has neurologist in the mater.prof.lynch...but shes more of an experiment really...she was misdiagnosedin limerick with parkinsons 2 years previously..prof lynch was our 2nd opinion...i joined pspa group in limerick...4 patients in the meeting 3 with pspa mum the only one with CBD..my doctor is great we can call anytime...they stopped speech therapy...it wasnt helping...she has a local health nurse and an OT...but no one has heard of CBD....

Boman
Boman in reply to Cianodude

Hi

I have tremors but not all the time and in general my right is affected far more.

Levodopa is helping some; they did some trials and we settled on a high dosage. In theory it helps a little with strength and alleviate rigidity. Pregabalin is the only other meds I am on (max daily dosage)

Here the doctors aren’t that familiar with CBS/CBD either and my case is considered atypical. Some doctors have suggested it might be more FND while others (including the most senior consultant who’s retired) emphatically affirm neurodegenerative and CBS.

My energy is intermittent as is my clarity of mind.

Cianodude
Cianodude in reply to Boman

Do you have tremors in your hands

Cian, have you found the PSPA Ireland online? pspaireland.ie/ You can call them and they are a great source of help. Any other questions, you can ask them or I can help too. Horrible time for you and your family. I am going through the same. Catherine

Hi catherine..yes ive registered with caroline in pspa in dublin...thanks...its the unknown catherine..wondering if everything that she complains of is CBD or something else...shes lost behind her eyes and cries all the time....just existing....where are you in ireland...im in limerick

Cian I am in Dublin. I have been through it all if you need any advice you can contact me. Prof Lynch too although he just made my husband's diagnosis, no support. Most support comes via community support and also local hospice if you can get her linked in there. Ask the PHN for home supports too. Also she can be referred to Psychatry for later life for her mood, anxiety, agitation. Hope I can help?

I shoukd say my name is Amanda....lol...cianodude is just my profile...yes prof lynch just diagnosed mam..but we went up to Dublin 4 times in a year and half because his fee is 400 a visithe only filmed mom for his students so no help there...its great to speak to someone thats been to the same doctor...

Very sad isn't it. god love all of you. I am going through the same. How long is she on the Sinemet? My hubby tried it for 6 weeks but his mood only got worse so got him off it quick. Unless, you can see any improvement in her symptoms, I would come off it in conjunction with the doctor. Ask about Quetaipine instead.

She wasmisdiagnosed with parkinsons in june 2015 and shes being on it since then for the tremors...4 times a day.double dose

Do they reduce the tremors?

Btw, Sinemet can sometimes cause more side effects than be of any benefit as it's normally only effective in PD and not a tauopathy. She can also try Seroquel to help keep her calm, have you got home help? Can you get her more meds for her mood?

No home help just me and my dad....hes adament no strangers as of yet....she takes lexepro once a day and mirap at night..what side affects could happen from sinemet.?

Amanda, neurologists are no use for us. Waste of time, good for diagnosis but that's it wouldnt waste my time going private. Go on his public list you can ask for that. My hubby saw him privately at first then switched to public - appointments twice a year. I rely mostly on community based supports - are you well linked in there?

PHN can arrange home care package to give you and your dad a break. Sinemet can cause low blood pressure, dizziness and so on. It is usually not effective as I said earlier for CBD unless you can see any difference? If not, get her off it. Ask about Quetiapine for mood instead.

Yes we went private but on a waiting list for public past 2 and half years

When was your husband diagnosed..how long after did his symothoms progress..mums swallow is still good thank god...

No i have no links to anyone your the furst person close to home that i can ask questions

Started about 4-5 years ago, swallow still good too. You can contact me if you like, are you on the Facebook Group for PSPA? We went private to get the diagnosis but then went on public list as really it's just money they are taking from you for nothing!

I think i am yes on fb page..look me up im Amanda Rossgorey on facebook....does your husband take betmega for going to the toilet all the time during the night??

I have messaged you Amanda

Oh the beautiful land of Ireland- just because you’re on the other side of the pond- don’t feel isolated- we all “get it” - wether being the patient or caregiver- you’re not alone- everyone’s hearts are broken

Hello Hello Hello! Oh, Im so glad to have found you on here!!! Im in Ireland too and my Mum has CBD. I had almost given up hope and was beginning to think we were totally alone. Isn't it crazy that the doctors don't help us connect together. I would love to swap email/numbers with you if thats ok? Hope to hear from you soon. P.S. I just joined today, so still finding my way around here!

Oh this is great..i have been part of this group about 18 months and just recently met a girl from dublin whose hubby has cbd....we swopped numbers and shes being great...id be lost without her and shes the only one from ireland....everybody on this site are amazing dont be shy ask all the questions you want...i have loads for you...my names amanda...please get in touch...what part of ireland are u from..ill message you my number now

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