I'm new here

I a 67 year old woman, living in Queensland, Australia. I was diagnosed with CBS in 2011. I want to connect with others living with CBS/CBD. I'm very fortunate as I'm managing this disease very well. I do pilates 3 - 4 times a week and use a wheelchair to get out every day.

[Hidden]

Good you are staying active. Seems to be the only beneficial thing to do. You will find others here to share their experiences.

[Kevin_1]

Hi xemx

Gosh - So few replies - possibly because you specified 'those living with CBD' There are a number of folk here who post and read who have CBD. I guess not all folk are here all of the time.

Anyway - Welcome to the forum, 'no of which no one wants to a member." As folk say here.

I'm so sorry to hear of your diagnosis. It sounds like you really have a handle on it. Bravo!

I do hope you will stick around and maybe share your journey a little, or ask whatever questions. There is a huge amount of hands on experience here. There's never any flaming, least none I've seen in five years, and folk offer ideas rather than demand they are right. In short its a great place to post and read.

Welcome

Warmly

Kevin

[margh2468 in reply to Kevin_1]

That it is Kevin-1, been amazingly helpful to me

[cameoboy11]

Hi I've recently been diagnosed with CBD { I am 69) and my elder daughter lives in NSW. Wher in Queensland are you ? Jo x

[margh2468 in reply to cameoboy11]

Hi cameoboy11, where is your daughter in NSW ?? if I may ask, I am house/pet sitting in Barnawartha,Howlong, Albury/Wodonga area, as my hubby is in Borella House in Albury now, having had the dreaded PSP for 8 years plus now, only actually diagnosed 4 years ago (I worked out what he had). This site is a wealth of information and so so supportive

Cheers and Hugs

Marg H Barnawartha Vic

[Hidden]

Hi Jo I live on the Sunshine Coast. Teresa

[margh2468]

Hi Hidden, Wow, imagine my surprise to see someone else from Australia on this site, sadly there is nothing in Australia (not that I have come across) and this site is amazing, my hubby Leon 76 has P.S.P. I actually worked it out about 4 years ago, originally diagnosed with Parkinsonism, put on meds that did more damage, weaned off them, and now meds to help except pain killers, depression meds etc. Leon is now in care in Albury N.S.W. as we are Grey Nomads travelling this wonderful country for the last 8 years, house/pet sitting, I am now sitting in Barnawartha Vic out of Albury/Wodonga, and have sits organized until Oct 19th in Howlong area. Leon is at the latest stages now, can not keep his eyes open voluntarily, chokes on everything, has PEG tube fitted (July 4th 2017) and been in care for 6 weeks in Albury. It is horrid watching the progression of this horrid illness, however this site helps me immensley, just knowing I am not alone. I am not aware of the complications of CBD/CBS must google it to see if it is (obviously is) similar to PSP. I am sure you will too, find it helpful

Cheers and Hugs

Marg H Barnawartha Victoria Australia

[raincitygirl]

Hello Teresa,

Sorry, I missed your post earlier! I havent got CBD, but my husband does. He doesnt participate on this site as he has lost most of his speech/writing/word-finding and has other cognitive loss and apathy.

Unlike many, his language loss was a first symptom. Gradually he became weaker and lost balance, but he can walk short distances with no help and accompanies me to aquacize 3x/week. He can eat almost normally. He is "cognitively slow" but has no dementia as such. He's about 5 years in we think.

Will you share how many years you had symptoms before you were diagnosed in 2011? You sound good! Keep up whatever you are doing - sounds like its helping you battle this!

Warmly,

Anne G.

[beau1988]

Hi Hidden

My husband has CBD. We live in regional QLD. Whereabouts in QLD are you. We were doing an annual visit to Brisbane PA hospital to see specialists. Though this year we just did a phone interview. Going anywhere with my husband is difficult. Please don't hesitate to ask questions. We're all here to give and receive support.

Good luck with your journey. I hope you have help from family/friends. I couldn't imagine going through this alone.

Kerry