I'm happy to talk...

[HelenRodier]

My husband passed away June 2016 with PSP. The gradual decline was very hard to take and he needed a lot of care. I miss him like mad but I have a lot of practical advice to give if anybody needs. Main thing is get help. You can't go it alone. My husband fell at night trying to get to the loo and convenes were a life saver. In the last months, I had to get help as I was going out to work and could not trust my husband Charles not to fall while I was out. If I can help anyone out there, can PSPA give my number to anybody who wishes to talk?

[Kevin_1]

Hi Helen

Thanks for being here for us.

This is a safe forum, but inviting people to private message you is a good way to go initially on forums.

Have you considered volunteering with the PSP for this? They may well have a system.

Maybe just hang in here and reply to posts?

Anyway... Waiving hello and I am sorry you went through this.

Warmly

Kevin

[Kevin_1 in reply to Kevin_1]

Adding...Though this is a safe forum do remember that anyone can read it and so giving out tel. no's is not too safe.

Sorry, that will be obvious to you... please put it down to my pedantic side.

I do hope things are OK for you after your loss.

Again

Warmly

Kevin

[HelenRodier in reply to Kevin_1]

Thanks Kevin and I really appreciate your reply. Yes, of course, I would love to volunteer for PSP and help in any way I can . Thank you again, Helen x

[jillannf6 in reply to Kevin_1]

i agee e kevin and liz

lol jil;

xxxxx

[Kevin_1 in reply to jillannf6]

Waiving

Smiles n Hugs

Liz and Kevin

xxx

[Helen119]

Hi

Convenes, How do they fit and where can I get them from, my husband hates pads will not use the no spill thing I bought and is always either not getting to the toilet in time or falls, I have tried loads of different things to try to stop him having to actually get to the loo, but he just ignores me and try's anyway.

I have just resigned from my job as I don't feel I can leave him on his own for long anymore, feeling a bit worried about how I will cope being here all day, without anything to get things back into perspective, keep telling myself it will ok.

Hxx

[VronB in reply to Helen119]

I was devastated when I gave up my job sure I would be bored. I found stuff to do with my church so I manage to get out and see other people. I find I can leave john for2 hours ok as he has a Medicare wrist strap. Try and find something outside the home and also try and find some respite care. If you are in the UK the hospice is good and contact crossroads who give 3 hour respite breaks. You need to get on the list tho as it oversubscribed. Good luck. Xx

[easterncedar in reply to Helen119]

I managed to get aides in so I could keep working, once he could not be left alone, but I often wish I had taken more time off while he was able to get out so we had more good memories made to help me through. The falls and the urinary problems are an awful combination. I hope your husband can use convenes, which fit just like a condom. When they work, they are a great system.

[Helen119 in reply to easterncedar]

Thank you they sound worth a try, I will talk to nurse when she finally appears

Thank again for replying

H xx

[Joanna8]

Hi Helen that is very kind. My dad has recently been diagnosed. We are still getting or heads around what lays ahead. He has become frail and wobbly and gets confused, but he is still walking and has his faculties. He just gets very tired and he is losing his eye sight and will often choke. But we don't know how this will change and when. It is really hard to see now, what is going to happen next and how quickly things will happen and what we need to do? Any advise would be appreciated.

[Hidden in reply to Joanna8]

Hello Joanna8, We are in the same boat it seems, my 84 yr old Dad has just had psp diagnosed so we are also new to it all. I have found it very helpful on here as had never heard of psp before.

Sue x

[Joanna8 in reply to Hidden]

Hi Sue

Sorry to hear that. It sounds so terrible, but being fairly early on in the journey, makes it hard to know what to expect. It seems that people are effected in different ways.

[easterncedar in reply to Joanna8]

Very different ways, indeed, but although the timing and severity of the symptoms vary, there are many shared experiences.

This community goes through phases along with the patients, naturally, as new folks join and learn together and then leave when their journey is done. We learn from those a bit further on, but often end up closest to those who are on the same timeline, sharing similar events and difficulties.

There is always a shared learning curve. Anyway, while I often recommend that folks look in past posts for information on specific topics, asking a question in a new post helps everyone who needs the information right now find it, and it helps new comrades find each other.

Love and peace to everyone here, Easterncedar

[HelenRodier in reply to Joanna8]

As to how quickly things happen is difficult. Every PSP sufferer has different needs. It is SO important that you have a good GP on board and make sure you tell your neurologist (do you have one?) everything. They really do help when the chips are down. Reach out for help with the professionals because they really can help with aids, care and everything.

[Hidden]

Hi Helen, sorry for your loss. You are very kind to offer your continuing support. I'm new to this, my lovely Dad has just been diagnosed with PSP. I'm his main carer, he's living on his own at the moment with a great care package but I know there are changes ahead. I may well be in touch

Sue x

[Joanna8 in reply to Hidden]

Hi Sue

It sounds like you are doing a wonderful job for your dad. Do you mind if i ask what you mean by care package? Is this gov support? How are you coping with the care?

My Dad is 72, my mum is in poor health herself, we are considering moving my family, hubby and two toddlers, in to help at home.

[Hidden]

Hi, because dad has 'too much' lifetime savings he has to pay for private care. Im on carers allowace and he pays for 45 mins in morning to help him shower/dress. Two hours before bed to get his tea/meds/pj's on. I've been his cater for 18 mths but was doing loads for him beforehand. I find it very hard especially emotionally as I can see the decline and so can he which is very hard for him. We are awaiting a couple of appts (he's now under a great team) which will hopefully answer some questions.

Xx

[ketchupman]

Hi Helen, I lost my wife to PSP last July 2016. She was only 54. I continued to work full-time during those final years, although my employer allowed me to do a lot of work from home and I also recruited family and friends and stay with my wife at times, as she needed 24x7 assistance during the last 2 years of her life. For the past 4 or 5 years, I've been leading a support group for the atypical Parkinson's (PSP, MSA, CBD, LBD) and I also serve on a committee for CurePSP.org. So I plan to continue to stay involved in helping others with this horrible disease. It does bring back painful memories of my wife when I see those in my group each month, as they struggle to walk/talk/swallow, but I love each and every one of them like family and couldn't abandon them now. I'm sure you'll find a great way to give back to others as well.

Best wishes,

Ketchupman

[Kylie4951 in reply to ketchupman]

Are you in the US?

[ketchupman in reply to Kylie4951]

Yes, in Louisville, KY. Home of the Kentucky Derby, KFC Fried Chicken, the Louisville Slugger Baseball Bat, and "The Greatest" Muhammad Ali.

[nic107uk]

Hi Helen, I'm so sorry for your loss and for all you have been through. My mother has PSP and my father is caring for her at home. She is now in a very bad way, unable to talk or walk. My father has some help and they seem to be coping. Did you manage to keep your husband at home until the end? My mother is so afraid of hospitals. We would like her to die at home but how practical is that? They live in Zimbabwe and don't have access to top notch doctors, nurses or medication.

[Karynleitner]

Thank you. My husband is just recently diagnosed . Things are getting difficult, yet it seems they will get a lot worse. His balance is not good. He needs help getting up and beginning to walk. He can only walk a very short distance now. His one hand is stiff and feeding himself with a spoon or fork is a struggle for him. He needs help dressing and getting into bed. He can not be left alone. He is very quiet and does not talk much. Asking him a simple question like " would you like tea or juice" requires patience , as it takes him several minutes to answer. It is Sad. He is an amazing guy and struggling with everything he does. I am wondering how quickly this will progress. How long did your husband live and what caused his death?