PSP Virgin

[Fiddle]

Hi, my Dad got his PSP diagnosis yesterday, we're all in a bit of shock still. We'd never even heard of this until this week. Dad's in the relatively yearly stages although his consultant has warned us how rapidly it could progress and suggested he ...

[easterncedar]

Dear Fiddle - Welcome to the forum, although I'm very sorry about your father's diagnosis. Everyone here knows about the shock of the diagnosis and the steep learning curve. It took me a while to find this place, and it has been a great help. Ask anything, someone will have the information for you. Hang in there. Best wishes, Easterncedar

[dorothy-thompson]

Dear Fiddle

Some of your blog got lost unfortunately but I would just like to say that my husband is in his eighth year of PSP. He was diagnosed in 2010 but, looking back, it all began in 2006.

The one thing we have all learnt about PSP, is that no two days are the same, no two sufferers are the same, not everyone gets all the symptoms (thank goodness), some people progress more slowly than others.

Keep on the forum for love, support and care.

Kind regards

Dorothy Thompson

[nomansland in reply to dorothy-thompson]

Fiddle,my wife followed roughly the same line as Dorothy,time wise and diag. time,I know the heartache,do keep in touch ...Rollie

[SharonAB]

Dear Fiddle,

The first part of your message came through. Unfortunately it has stopped at "and suggested he...."

Can you repost your message or add in a 'reply' with the rest of details/statement/question so we can see what else you were writing?.

Thank you,

Alana - Western Australia

[Heady]

Hi Fiddle,

Sorry to hear about your father. Please, please use this site! It's a great help, you can ask anything, say anything, good or bad. Everyone will know EXACTLY how you are feeling!!! It's a huge T-shirt and we are all wearing it. Nothing will shock any of us, every thing you will go through, somebody will have experienced it and be able to reassure you, comfort you, or just be an ear for you to let off steam.

Unfortunately, you will find, like yourselves, nobody will have heard of this dreadful condition, including most of the medical world! It can get very lonely out there, but we are all here, think of us as your new family, everybody needs help and we are all on this site to give and receive much needed support and love and understanding!

Go back and read the old blogs, some will frighten you, some will give hope, most will give you some knowledge about PSP that nobody else can.

I'm afraid, it's one day at a time. So enjoy the good ones and have patience on the bad days.

Love to you and your family

Heady

[easterncedar in reply to Heady]

Beautifully said, Heady. All very true.

[Fiddle]

Thanks your all of your replies folks, I don't seem to be able to get back to my original post to be able to re-post it. I'll keep trying. Thanks again for your support.

[82wendy]

Hi fiddle sorry to hear of your dads diagnosis I only found this forum end of last year my mother in law was diagnosed about 4 years ago but I believe she had symptoms 4 years earlier. People will always answer your questions but remember everyone is different and have different things move at different stages'From my experience power of attorney for health planning and financial needs to be done asap we managed to do financial power of attorney but some care issues have been a problem as my mother in law does not have mental capacity to make decisions on her health and well being good luck and big hugs to you all and do what you can as a family now enjoy fun things together

[quickgel]

Hello Fiddle, in a way we are all PSP virgins in that experience of this disease is unique in the way the symptoms manifest themselves and vary between individuals. From reading the contents of this site I recognise some of the symptoms but by no means all. My wife was diagnosed about six years ago and died four years ago so we only had two years of the expected seven to ten years together. Obviously Margaret had had the disease undiagnosed for a long time which is not uncommon, attributing the earlier symptoms to all sorts of incorrect diagnoses. I only make this point to illustrate the individual nature of the disease and the life style changes that will affect you and your Dad. I'm sure you will find this site a tremendous help, its contributors know what they are talking about from direct experience.

Quite apart from the day to day physical adjustments necessary there are the various official hoops to jump through in order to gain access to help from the local authority, social services etc. Once in the system I was staggered at the amount of help available, getting in the system was the difficult bit. All I asked for was someone to look after Margaret while a got one full nights sleep a week. I ended up with two nights cover, carers twice a day, hand rails installed, hoist and slings, a hospital bed, an air mattress and ultimately a wet room. Not all at once of course and the costs are 'means tested' but it made it possible to keep Margaret at home. Things may have changed due to financial constraints, and I'm sure there is a degree of post code lottery involved but I hope you find as much help as I received, it doesn't make the disease any easier, but it helps you cope with the practical issues. My very best wishes, Jerry.

[billyboy99]

Hooray, I'm finally in the site . Thank you Liz . I know I should not add to an existing post but hope you can understand.

[wifemo]

Hello Fiddle -

As you will come to realise, some of us are ex-carers, but a year on and with a clearer head with a few good nights' sleep behind me, it all seems like a bad dream now.

My best advice would be to accept all help that is offered - you can always stop if it proves not to be what you need - but above all look after yourselves as you will need your strength to fight any battles on behalf of your Dad.

The PSP Association's literature will be helpful for explaining to those who haven't come across it before (and you will find that seems to include most of the profressional you will meet) and if you are in the UK there may be a local support group which you will find helpful.

Big hug, and enjoy each day for the good times and making memories.

Mo

[yoblet]

Mo is quite right when she said get all the details from PSP ASS. this I found very helpful for for myself but most of all when my wife who had cbd went into hospital it was quite an eye opener, after the staff read the litrature ie the carers nurses and even some of the professonals I found that when they understood CBD they were more understanding to what my wife had. in other words get all the information out to the all the peple that will look after your dad it helps!

[ginnypayton]

Find a support group if your not in one yet....And go if your able....They are a great way to understand the disease process as well learn a wealth of knowledge...Read any and everything that you can on this disease...My mother in law has it going on 7 to 8 years now.

[jimandsharynp]

Yes PSP can move quickly at times and slowly at others. Since you are new to PSP I would like to give you some words from one who has been in the struggle for five years. First, don't worry about what "stage" your loved one is in. Truth is you can't tell the stage and it doesn't matter. You can get aspiration pneumonia in stage one and die. You can be in stage two and die from a bad fall. There are no guarantees you will ever reach any stage. To spend time on stages is wasting time better spent on your loved one. Second, don't worry about what MAY come next. PSP is unpredictable and to worry about coming things is another waste of time and a distraction from the loved one. You can't control the future but you can control each day. Third, ask for help, do research. I have excellent "tools" to help you do research just email me and ask. [e-mail].

Jimbo

[jimandsharynp]

A couple more things to do. Check out where you are living. If there are two floors this will become an issue. If you don't have a shower that a wheelchair will go in this can be a problem. Plan ahead as much as possible your surroundings. Take care of power of attorney documents, wills, health advocate statements. A time will come when your dad's signature will decline a huge bunch so any legal documents need to be arranged early on. I'd recommend getting all assets in two names. This last thing is a delicate one. Find out what your dad feels about feeding tubes. PSP causes swallowing issues and feeding tubes are sometimes an option. My wife doesn't want feeding tubes to prolong her PSP life. You have time for all of this. No rush but be thinking about these things in advance. PSP is a terrible disease that just keeps taking, and taking, and taking from our loved ones. We are here for you and your family. Ask for advice or help anytime. God bless you and live one day at a time. Travel with your dad while you can. A time will come when travel is not possible or VERY difficult.

Jimbo