Living with PSP

[Fanofwillie]

I was diagnosed with P.S.P in Sept 2018 and just today attended my first PSPA meeting at Liner Hotel which I found quite daunting but informative. I am still very nervous about what the future holds but hope to remain positive but feel sorry for my wife who will be caring for me.

[Hidden]

Welcome to the site.

Yes, it is daunting as what is to come. It doesn’t happen all at once. You could have years before your life is curtailed significantly. Think about doing things you were going to wait to do and do them now. Know we are all here whenever you need us.

[kenh1]

It was good to meet you at the group this morning. I had not been for a few years and found the meeting very helpful. Keep on being positive. Take one day at a time and don't worry about your wife. I have found caring for my wife has made me love her more and more and though tiring strength has been given for the hours of need. I hope to meet you at many more meetings in the years to come. Best wishes. Ken.

[Fanofwillie in reply to kenh1]

Hi Kenh1, thanks for your nice comments, can you help to put a face to your name by reminding me where you were sitting. Once again thanks for your kind words.

Regards

Tony

[kenh1 in reply to Fanofwillie]

I was sat facing the door between the group leader and the man who has PSP yet still regularly holidays in Thailand. My wife has CBD and I spoke quite a lot about the help we received from our local hospice. I was wearing a maroon jumper and I think you were sat opposite me with your back to the door.

Regards Ken.

[Fanofwillie in reply to kenh1]

Oh yes now I can place you. Thanks again

Regards Tony

[kenh1 in reply to Fanofwillie]

Hi Tony, I hope to be at the PSPA meeting at the Liner Hotel tomorrow and hope to meet you there. Best wishes. Ken.

[Kevin_1]

Hi Fanofwillie

Welcome to the forum.

I'm sorry you need to be here.

My wife and I enjoyed many good moments. The diagnosis is not the end of love and good shared moments.

Many laughs too!

There is a wealth of experience here from many who are further down the path.

Collectively we are sharing many health professionals advice and information. A living database if you like. I hope you and your wife will find it helpful.

Additionally there is no anger or flaming on this forum... We are all on the same road. It's a safe place to ask questions and to share.

Welcome to you both.

Best

Kevin

[Fanofwillie]

Thanks Kevin, we still have love and laughs and long may this continue

[doglington]

Welcome.

It's very daunting I remember.

My husband died over a year ago.

Things progress and you find the strength to manage - with our support !

I know that we couldn't imagine we could cope. But it progresses relentlessly and you do.

I always recommend that in the early days you make memories. Then make sure you plan. Most of all polish your sense of humour. Best survival strategy there is. We still found black humour right through the nightmare.

Good luck

Love Jean xx

[Dadshelper]

Welcome to the site. Sorry to hear of your Dx but you've found a great place for info and support. Feelings of being afraid or nervous is completely normally, for anyone. Now is a good time to do things with your wife that you may have been planning. Unfortunately with these diseases sooner is most definitely better for trips etc. Read some back posts or ask questions to get a feel for what you should have in place health wise. Plan for tomorrow but don't overly worry about tomorrow, have fun and enjoy today.

Ron

[Fanofwillie in reply to Dadshelper]

Dear Dadshelper thanks for your kind words, much appreciated

[raincitygirl]

Welcome Tony

Sorry to hear about the dx, but you've come to the right place!

In addition to the wise words of the members who've responded here, I want to say we never know how it will go! eg my hubby (CBD) was eating and drinking well, self-propelled in the house, maintained humour and laughter right up to the day he died. He had asked me "how will I die?" early on, (and I'd replied it seemed most died of aspiration pneumonia, peacefully, without pain)

.. but he had a sudden seizure/stroke one day and passed quickly. After all I'd read on this site, I never thought it would go so fast. Who could have predicted?

So.. Not trying to be morbid, just want to remind folk that you never know how it will go - not all stories are the same.

Wishing you a slow progress with many years of love and fun ❤️

Anne G.

[Tippyleaf]

Welcome - though sorry you had to join us . I echo what others have said. My husband diagnosed with PSP in 2013 and we set about putting affairs in order - redid our Wills set up Power of attorney and discussed what my husband did and did not want - e.g he does not want a feeding tube. Then we carried on with our lives. My husband travelled to see family members in Australia and Asia we went on a cruise etc. There will be periods of adjustment and adaptations you will need to make - but then we are all also ageing!!! Many memories and good times to be had for you and your wife.

The Liner hotel in Liverpool ??? I recall seeing it near the station when I visited our son who is at uni there!! Small world!!

Wishing you many years of making memories with your wife

Love Tippy

[kenh1 in reply to Tippyleaf]

We moved to the Liner 5 years or so ago the owner or managers mother had PSP he offered the room and put on a Christmas concert in aid of PSPA. It is a good venue. Everything is as though you are on an ocean liner without the sea sickness. Recommend you visit it next time you visit your son. Ken.

[cameoboy11 in reply to kenh1]

Where are you exactly ?

[cameoboy11 in reply to cameoboy11]

Ken

[kenh1 in reply to cameoboy11]

When I said we moved I was meaning the PSPA meeting moved to the Liner hotel in Liverpool.

Nearly all of us attending live in Merseyside.

[cameoboy11 in reply to kenh1]

Thanks for letting me know x

[Tippyleaf in reply to kenh1]

How lovely to hear that a big hotel is being so supportive I will certainly consider this as an

Option next time I stay in Liverpool. I do love the city so much to see and do.

Xxx

[Katiebow]

I'm pleased for you that you have found this forum I'm sure you will both find it invaluable. The lovely people on here will offer great advice, warmth love and a protective blanket that you can wrap around you when you fee low or insecure. I cared for my husband throughout his PSP journey and I agree with others that you should do your travelling, go to theatre, cinema, and all of the other pleasures in life whilst you are able and carry on as normally as possible. As you both travel this path you will hit obstacles but there is usually someone to reach out to and get support, get as many professionals onboard and try to stay one step ahead of the game e.g. adaptations to the house as it makes life a lot easier if these are already in place when needed. Discuss your wishes and get them recorded in an Advanced Care Plan, get your Will and Power of Attourney sorted and once they are done you and your wife don't have that to worry about. Your dear wife will find the strength to care for you as things progress and when it gets a bit difficult for her you will both need outside help with the daily routine. My husband was horrified at the thought but quickly got used to having help apart from me and had lots of fun and giggles with these people. He was also horrified at the thought of attending the day service at the local hospice but actually enjoyed his weekly day out without me and built up strong relationships with some of the staff. it was a massive help to me as it gave me time for myself which he understood was vital. His illness, although terrible for me to witness brought us closer together and it's amazing what inner resources we have to cope with all that is thrown at you. I miss him terribly but was pleased to be able to keep him at home until he died although this isn't always possible, it depends on your circumstances. Hope this helps.

Love Kate xxx

[HilsandR]

Hi Tony, sorry to hear of your diagnosis but glad that you have found this site. From the responses you have seen you will already have an understanding of the generous people on here, who whilst negotiating their own journeys still find the time to support others in the same situation, carers and sufferers alike.

Of course, getting the diagnosis and then researching what it may mean can be terrifying, I know that's how I felt when we got my husband's diagnosis after 4 years of not knowing what the heck was going on with him. Once I'd picked myself up I decided to just get on with life, do the things we wanted to do whilst we could, and worry about tomorrow when tomorrow came. I am not going to lie, by the time things had progressed into the 8th year the going got really tough but determined he would still get enjoyment out of life we had outings, visited friends, always had friends in an out and whilst by this time his communication had gone I knew he still found joy in being included. Until the end he never lost his sense of humour and neither did I and that saved my sanity on many occasions.

Try not to worry too much about what the future may hold, none of us, not even those of us who are fit and healthy right now can know what tomorrow might bring so that's why we should all learn to live in the moment. Also, remember that PSP is not a one size fits all and will be unique to each sufferer, including symptoms and progression, so whilst the posts on here can make difficult reading, remember that not everyone will tread the same path.

Presumably you will encourage your wife to look in on the site from time to time (maybe she is already doing so). Learning as much as she can will be of great benefit as time goes on and believe it or not some of that information will be invaluable at clinic appointments as many of the medical people are still very much in the dark about these diseases, we often end up educating them. Everyone on here has a different story, a wealth on information as to how they tackled various issues, and most importantly it's a lifeline to have contact with others in the same boat when the going gets tough.

This site is worldwide, Tony, so always someone ready to support in whatever way they can.

Best wishes, HilsandR

[Fanofwillie in reply to HilsandR]

Hi HilsandR, many thanks for your wonderful response and I am most grateful for your very kind words and advice. These are much appreciated and I shall keep on using the forum and hope that one day I can advise people who find themselves in the same situation.

Love and best wishes

Tony

[JantheNana in reply to Fanofwillie]

Just want to emphasize what HilsandR said about the medical community not knowing about PSP. I found this to be so true.You will find yourself having to explain to them as best you can what PSP is,even when you have a hard time knowing yourself. I don’t mean to alarm you,just prepare you.

My husband lived with a dx of Parkinson’s for 8 yrs before his PSP dx and most people have at least some understanding of what Parkinson’s is but then when the dx changed no one knew what it was. We were fortunate to find a physical therapist who did have training in what was needed.

Blessings and love to you and your wife. Janet

[LuisRodicioRodicio]

Hi Fanofwillie!

I'm sorry PSP has entered your family.

During the 7 years in which we lived with PSP I have been collecting our own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers.

I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment. The information about our experiences with PSP is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have, exception made of PSP associations chats and their support, to face this unknown disease.

Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

[cameoboy11]

Where are you exactly ?

[Zibo]

I am so sorry to hear about your PSP diagnosis. Glad you are reaching out and wish you to find the best support to surf this.

[Fanofwillie]

Hi to all members, since registering on this forum I have had so many messages offering help and advice and would like to thank everybody who has replied to my post, I truly thank you all.

Love

Tony

[Makua]

I am so sorry about your diagnosis. The only thing I can tell you for sure in my situation was that I made sure I could keep my wife at home. I did not want her in a nursing home. We had tried that as well as assisted living to no avail. I know this may not be possibly for you, but if it is you might have to bring in caregivers to assist your wife. Also I was able to get support from Kaiser Permanente who put my wife on Pallative Xare program and eventually Hospice care. This was all done from. Hope this helps.

[Cuttercat]

I join everyone here in welcoming you and wishing for you both strength and love in the years ahead.

Cuttercat

[jamesmoffat]

i like maroon jumpers too