Diagnosis

Just wanted to say Hi 👋 My Mum was diagnosed with CBD in June 2018 after 4 years of tests. We converted our home so Mum could move in with us and I’m her full time carer as she’s unable to do very much on her own.

[Hidden]

Welcome to the site. I am glad you got an answer after four years. Sorry you got the answer you got.

After a year and a half of tests and no answer I took Larry’s results elsewhere for a second opinion to get a proper diagnosis.

[JCRy]

Hello and welcome, Bed 42!

I joined this site around a month ago, when my husband was diagnosed. You will find support, help, comfort, information and even humour when you need it here! I'm sorry to hear that your mum has been given the PSP diagnosis, but know that you are now able to draw on a wealth of experience and understanding here, for good days and bad.

It is worth taking time to explore historical posts here, if you have time and inclination. I have found a richness of info and kindness, and I am sure you will, too.x

[Kevin_1]

Welcome to the forum Bed42

Caring can be tough and humour can make it lighter, as you probably know.

Wishing you as many good times as can be with your Mum.

From Kevin in Bed 73

[Hidden in reply to Kevin_1]

Thankyou for replying to my post, yes humour is a great thing to have my Mum and I both laugh a lot which your right does get us through x

[Motts]

I am new to this site and have found it to be a real blessing. Being a care giver is extremely difficult. The most important thing I learned is that we need to take good care of ourselves too. I hope you can find time to do at least one uplifting thing for yourself each day. I was told to make a list of 20 things I enjoyed doing & do one a day. At that point I could not think straight and came up with only five things. My friend said that's ok - work on it later. Funny thing is none of my favorites cost more than $2. That was over 25 years ago and now a cup of coffee with my friend cost a bit more. That was my number one on the list. 2. was bake cookies (I love the smell in the house). 3. was walk my dog (great exercise for him and me). 4. was reading an inspirational book. 5. was sitting on my porch with a cup of tea and watching it rain. Wishing you and your family many smiles and hugs

[Hidden in reply to Motts]

Thank you so much for your inspirational words. At the moment I try to go to the gym 2 or 3 times a week for 45 mins, if I have someone able to sit with Mum.

[LostinHeadSpace]

Hi Bed42,

Thanks for introducing yourself. Can I ask what you did to your house to prepare? My husband is in early stages of probable CBD, and I think about we could do to the house to make it safer down the road.

Lost

[Hidden in reply to LostinHeadSpace]

We actually converted our garage into a living room, very small kitchen, shower room and bedroom. It’s all on one level so mum has no stairs which she couldn’t do now anyway. Lots of grab rails into shower room and along walls, although now she can’t walk unaided at all! Hope that helps you x

[LostinHeadSpace in reply to Hidden]

Thanks! I"ll keep that in mind for the future. I would love to do anything to make home safe.

[raincitygirl]

Hello Bed42 and Welcome!

I am a caregiver-spouse for my husband dx w CBD between 2016 & 2017. This site is my sanity-saver. Glad you found us.

If you have any questions ask away! As Juliet and others said above, the historical posts are a great resource. I have - no exaggeration - saved myself a number of trips to the doctor's office just because I read a ton, prepared, and (mostly) didn't panic when a symptom showed up.

Good luck and keep in touch

Anne G.

[DenB]

Hi Bed42,

My GP put me In touch with my local hospice so that my husband could go there one day a week. They can also help with respite care.

The day that he goes to the Hospice is my only day off from caring and is my saving grace!

Denise x

[Hidden in reply to DenB]

Hi Denise it has been suggested a few times by doc etc for my mum to go to a day centre but she doesn’t want to. I’m very lucky that I get help from my niece and brother/sister in Law when they can. So my husband and I can get a break from it x Debbie