Feeling isolated

[Sonia1970]

Hello my name is Rebecca and I'm 47 and was diagram last year at Parkinson's nsw Sydney Australia with cortisal had basal ganglionic degeneration I'm feeling still so alone with this disease since my unit of sushi I've since developed inter I epilepsy In form of a stare space and lewy body's and sadly a whole heap more is there VA anyone here in Sydney with my disease someone who gets to it from a non clinical perspective I'm only 47 with a young son

[easterncedar]

Hi, Rebecca. I'm so sorry for your situation, and sorry I'm not the near contact you are looking for, but please know you have found folks who care even if far away. I'm in the eastern US, about as far as can be on the planet, but I send hugs anyway. There are folks in this community from Australia, and several, from various places, with CBD, although most are dealing with PSP. You are so young. I can only imagine how you must be feeling. How are you managing? Do you have help at home? Please write. Love, Sarah

[Sonia1970 in reply to easterncedar]

Thank you and not much my sadly I'm an only child and my parents don't get it intact they have all but shut me out since I got sick especially if dad mum doesn't talk about it carry's on like everything's OK and it's not thank you kindly for ur lively discussion words Rebecca

[Sonia1970 in reply to easterncedar]

Thank you Sarah it's OK that your far away just knowing there's someone in the world who knows just how I feel is a real comfort

[Bargiepat]

Oh that is so sad.......

You are so young and at any age it is a terrible condition to have to face........

Stay strong,

XXX Patrick.

[Sonia1970 in reply to Bargiepat]

Thank you Patrick for your kind words it's real tough lots of tears shed you take care god bless u you

[Christine47]

So sorry of your predicament. I have a suggestion. There is a drop down menu by your name. There is a link to "People near me." You might be able to locate some in Sydney. Hope this helps!

[Sonia1970 in reply to Christine47]

Thank you kindly

[honjen43]

Hi Rebecca. I am across the ditch in Hamilton, NZ. Closer than some but still not close enough! My husband had CBD long before we knew that such a thing existed. I have learned much more from this site.

Am sad to hear you are facing this on your own with a young son to bring up. How old is he? Sounds like it would be good for you to look around for a good live in carer to take care of you both. And make plans if you are able while you can discuss and communicate well.

Take care and keep in touch.

Hugs

Jen xxx

[Sonia1970 in reply to honjen43]

Jen I have a partner to who is from new Zealand he works nights and lives close y I'm very Independent my son is 9 and I have a daughter but sadly we don't speak she's 21like my parents they don't accept my condition but have through pall I support a lady who takes me out four 4hours a week how is ur husband now is he coping OK and ur family to take care god bless Rebecca

[honjen43 in reply to Sonia1970]

Glad you have someone to be nearby. This disease puts serious pressure on even the strongest relationship! Your young man is probably of an age where he can accept simply what is happening to you if is explained in ways he can relate to. Make sure he can understand it is not catching! It will be difficult road for both of you. Give him heaps of hugs (uuuugh! I hear from him!) Make sure he is aware that if you don't smile somewhere along the way it is because your face won't let you, not that you don't want to! Get some sign language of sorts happening so you have your own special ways of communicating.

I have grandchildren I have been close to in their early days, and know they drift away from close company as they get older. We were never a 'cuddly' family until we began losing family members. Even my father, a staid old gentleman, always hugged me when I left after my mum died. We were never sure when we would meet again when we lived at opposite ends of the Earth!

Rebecca, if you touch my name in blue beside the face, it will take you to my patch and all my posts and get the full story of my husband. Sadly, he has now passed away, but I remain on this site as I learn more, and can relate to and help others still.

Hugs

Jen xxx

[Sonia1970 in reply to honjen43]

Jen OMG so deeply sorry I can't smile now but attempt to hug my little man all the time we have found a special way to speak hug him all the time and it's OMG really mummy but I do it any way my head hurts all time time and my muscles are super excited tight it's going to fast and now effecting my right side slowly ambit fight I will fight to live again so sorry about ur husband

[Jingles243 in reply to Sonia1970]

Hey Sonia, so very sorry to read your posts and know your suffering but keep in touch in this site, there are some wonderful people here, suffers and carers, all of whom will support and love you. Get to know them by posting as often as you can. I don't have any personal experience of CDB but an involved with CBD & PSP. This post comes with hugs and support. Jingles

[Sonia1970 in reply to Jingles243]

Thank you so much for your reply it's greatly appreciated

[Sonia1970 in reply to honjen43]

Hope ur doing OK its tough

[Sonia1970 in reply to honjen43]

Jen hope ur OK boy this disease is tough is the most emotional rollercoaster I've ever felt like you said give my son loads of hugs please stay in touch after seeing my neurologist today physiologist palliative doctor yesterday I feel more Alone than ever will Hopefully see my man tommorr get the hug I desperately need it's going to fast and it's only the so called first diagnostic year take care Rebecca

[doglington in reply to Sonia1970]

Big hug for you, Rebecca. Its a lot to take in I know.

We are here to support you;

love, Jean x

[Sonia1970 in reply to doglington]

Thank you cried my heart out there's nothing more to they can do except more meds and keep me stable and independent woman for as long as possible thanks again so great full

[MidsDofCBD]

Like many of the other I live miles away sorry . Do u have a PSP association in Oz ? One of the things I found they were very heaplfull with is information booklets . My dad has CBD diagnosed over 1 year ago but way before that , the first signs I was seeing and questioning were his behaviour . It's hard to explain but 1 of the first ways cbd effected my dad was loss of empathy , he could be very very difficult and lost friends . I m not judging or blaming in any way , I now know it's the illness . But maybe if you can show your family the booklets explaining the effects the condition can have on the brain it may help . 1 of the meds he's on now Amantadine has really helped with this and def help him just be nicer and less angry . I hope I ve not offended you , i m just sharing our experience . So sorry what you are going through .x

[Sonia1970 in reply to MidsDofCBD]

No offence taken sadly my family don't get my illnesses I started getting symptoms back in 2014 yet two years on and many neurologists later I took matter into my own hands my first sign was a slight tremor in my left hand them I started becoming forgetful and staring in to space before finally last May I got my cbdg diagnosis at last now it's tough but hang in there OK kind regards Rebecca

[Christine47]

I was looking for something else and found this. psp-australia.org.au/

"PSP Australia Support Group

The PSP Australia Support Groups meet bi-monthly in two locations: Cheltenham on the first Thursday of every second month and Mornington on the second Friday of every second month. Our meetings comprise informal information sharing and socialisation as well as presentations by professionals. For information about upcoming meetings or to subscribe to the regular newsletter, contact Parkinson’s Victoria on [phone]. See news and events for 2015 meeting dates and further information about the activities of this and other PSP support groups."

Are you familiar with it? Good luck.

Christine

[Sonia1970 in reply to Christine47]

Thank you kindly Christine but I'm in Sydney

[honjen43 in reply to Sonia1970]

This group is on Facebook too. Head office address in North Ryde, Sydney. Phone [phone]. Hope I have the number right. Am not too good at remembering without writing things down first. This might put you in touch with others in similar circumstances.

Talk to the staff around your specialists too. They may be able to put you in contact with a group near you. Ring the office - will be cheaper than another visit to your specialist.

This beast can move quickly or slowly. Get a referral to occupational therapistso you can get assessed for additional equipment to help you, like walking aids, over toilet commode or raised seat, bed rail, monkey bar, etc. Also ask for an exercise list, stand on toes and down while holding on to kitchen sink, etc. Our Parkinsons group had dancing classes which are very helpful for making movement less challenging.

Know how hard it must be! Try and take a deep breath and control the panic. It will help you think things through. Write down how you are feeling in a diary so you can refer back to when things occur.

Grt your son to take some pictures of you both together so he has something to keep hold of.

Hugs

Jen xxx

[Sonia1970 in reply to honjen43]

Jen I'm trying to get to that group I can't cause of lack of transportation my physicologist Kirsten who's fantastic and runs the group is trying to help me had ndis approved but it's all wrong take care keep warm Rebecca

[honjen43 in reply to Sonia1970]

Pleased you are in touch with them. Perhaps Kirsten can get others to make contact with you. Travel in cities can be a real problem when you cant drive, or it is some distance away.

Doing my best to keep warm here! Experiencing a polar blast at present. No snow here and oo much of it further south! At least i still have power on!!

Hugs

Jen xxx

[Sonia1970 in reply to honjen43]

Hugs snow would be lovely but I'll never go skiing again or do my thrill seeker sports again which I so miss hugs