Hello I'm new here.

[Rowan8831]

I am new to posting on this site although I have been reading it and getting lots of help and support from all of you for a while. I originally found it by googling continence and cruises! My husband was diagnosed with CBD in 2012 at the age of 62 and the disease is relentlessly following its horrible course although we are fighting it all the way. He is in respite care at the moment - which is why I have time to post as I also work full time - and sadly we never got to go on a cruise. My latest challenge will be to apply for chc but it took us so long to get a blue badge I am dreading the whole process!

[easterncedar]

HI, Rowan. Welcome from here in the u.s. There's so much good information here about applying for your CHC, I don't know how anyone manages without the help this site provides. All I can do is wish you luck. Hang in there. Easterncedar

[abirke]

Welcome Rowan...Continence and Cruises huh? Well maybe ya'll can take a cruise around the Continent in your...automobile....hard to do the Merenge dance or that one where you go under the horizontal pole...but you also can see more than just blue ocean *beautiful still yet....I mean for us in America ; we are sort of jealouse in that you guys get to go to Europe anytime you want......

OK all kidding aside. I welcome you though I am sorry you have to be here. CBD is a serious matter and that your husband has had it for at least 4 years now, you are dealing with alot. If he is in respite care, that sort of means you know your way around CHC.....if not, Kevin 1 and others can help you.....If you have any great ideas on CHC, please share....Like easterncedar, I am from the US but we know that the CHC can be a tough nut to crack...again welcome....

AVB

[Satt2015]

Hello Rowan and welcome

In the first instance I would suggest you ask your district nurse or even better if your hubby is a patient of your local hospice request that they start the process for chc

They don't make it easy, but it IS possible! Also check out caretobedifferent amazing advice re chc

Equally I'm happy to help you where I can

You must and I mean must answer all questions as in worst case scenario i.e. Today he managed to take 5 steps but think back to yesterday or last week when he was unable too, make sense?

There is a lot of help out there and most of what's available you will find through your new friends on here as I have, because for some reason no other bugger i.e. GP likes to share all the help and info available?!!!

Do keep us posted x

[PUTLAND]

Welcome Rowan. We are all here for each other. xxx

[Amilazy]

Hi Rowan

Agree with Satt2015 but also suggest you read Kevn1's post on CHC. I assume you have arranged other benefits (PIP/DLA, Carers Allowance) if not contact your local social services, CAB or hospice.

Pity about the cruise but I hope you got other good memories.

Best wishes Tim

[DenB]

Hi Rowan8831,

My husband also has CBD, diagnosed 2013 but symptoms since 2010, so 6 or so years now.

My husband has just turned 60......yesterday, in fact!

I care single handedly for my husband as I prefer to do that, not wanting to stick to a schedule etc for carers coming in and out at different times.

We have ceiling hoists fitted and a hospital bed and we had a battery pack fitted to the back of his wheelchair so that It is a bit easier when we go out.

We have had a WAV for 18 months, I think, which also makes it possible for me to push the wheelchair into the back of the car, hook up and away we go!

Of course it isn't as easy as it sounds but as I say I manage and he goes to a hospice once a week which is a great help.

I hope to always to be able to care for my husband here at home, so haven't had to think about CHC but I suppose no one knows for sure what will happen with these awful diseases.

I have been told that I should get a care manager on board, just incase I can't care for my husband for any reason, anyway that is something that I must get around to do!

If I can help with anything , there may be something that I have come across that you may be wondering about and if not there will always be someone on here that can usually help with a problem

Anyway, I am here, and post from time to time.

Take care

Denise x

[Rowan8831 in reply to DenB]

Hi Denise

Good to hear from you and I think we live near each other? My husband goes to the hospice once a week too on a Wednesday. We are just in the process of having a hospital bed fitted and we have an elk hoist now but for the moment he is still walking. You are right that it is often hard to manage the logistics of carers etc. Thanks so much for your kind response. I have been reading your posts for a while and we have such similar situations and experiences. It feels worse when they are so young. Happy birthday to your husband x

[DenB in reply to Rowan8831]

Thankyou for your kind wishes.xx

[Teeker]

Hi Rowan 8831,

Welcome to the best support family group. I joined this group about 3 months ago and have learned a lot more about PSP than I knew before. My husband was diagnosed in August last year and the support and advice I have received from others who are coping with this horrible, horrible disease is priceless. I thank God every day that I joined this group. I think of each person as part of a huge extended family, who care and are always there with a shoulder to cry on. And I must admit that there must be lots of wet shoulders😊😊. So again welcome to the family. Sending hugs and love to you and hubby.

Teeker(Esther)xxxxx