1 year today: Hi everyone. It is now 1 year... - PSP Association

PSP Association

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1 year today


Hi everyone. It is now 1 year today since Les lost his battle with PSP.

I struggle so much and still have emotional meltdowns. It's not getting easier even though I try to tell myself it will. I still feel lost without him. We were together 43 years and married for 41.1/2 of those. I miss him so much. I would love to see him just 1 more time - pre PSP and tell him I love him and miss him.

His struggle was a tough one as it is for all PSP sufferers, he fought hard to stay but it was a battle he couldn't win. 2 days before he died he must have used any strength he had, I was staying in the hospital with him and sleeping beside him. As I tried to settle beside him he suddenly grabbed my head and pulled me to his chest, that hug will always stay with me. He must have sourced all remaining energy he had but he knew he wasn't going to get better.

I still haven't been to the cemetery as I hate to think of him under all that soil. Today I am going to make myself go just to let others know I still care (although I shouldn't need to). I talk to Les every day as I try to carry on. It is going to be a tough day.

The world is still turning but I want to get off as I can't keep up with it.

I keep telling myself Les is only a whisper away and knows what is happening even though he isn't with me physically.

Sorry to rant. I haven't written anything on here for ages but I have been looking each day.

I am sending love and hugs to everyone who is in this forum. You have all helped me to keep going from when Les was initially diagnosed right to the very end.

This photograph was taken in December 2015 at a Christmas lunch. We had only 1 Christmas after in 2016 as he passed just before Christmas 2017.

Love and hugs


31 Replies

So sad for you Pat.

What a great love you had with Les.

Sending love and hugs back to you and i will be thinking of you today .

Lynda ❤

Baileyboo in reply to dollydott

Thank you.

Hi Pat,

We are all so different aren’t we and we all grieve in different ways. I was married for 44 years and still talk to my darling every day but not in a sad way. I have filled my life with activities and am rarely at home for a whole day. The only time I feel lonely is when I am with a room full of couples on special occasions. In the evenings after a full day, I am happy to be alone and tell my darling all I have been doing and all the funny things that happen. Not always out loud but I still feel part of him so if we are still connected he’ll hear. If we aren’t it’s good for me to go over events of the day and smile again.

I’ve met so many lovely people in the last two years since Colin left me. I’ve recently joined a very lively WI where there were 60 women at the last meeting, all very friendly and many widows. This week I did my first stint serving teas and cakes at the local weekly market.

There is so much going on out there and so little time to do things. Life is so short. I know Colin would want me to enjoy and make the most of the time I have left. I miss him but life is good and can be great fun even after the devastating time we have gone through.

I pray you will soon be able to make a new life for yourself. I think to myself that whatever I do, however long I grieve, it will not change the outcome. Colin is never coming back to me while I’m alive so I’m going to enjoy life. Les will always be in your heart, no one can take that away from you but only you can change the situation now.

Don’t worry about what other people think. If you don’t want to visit the cemetery don’t feel you have to. It’s nothing to do with anyone else.

I hope it won’t be too long before you start to feel happier.

Best wishes


Baileyboo in reply to NannaB

Thank you Hannah

I need to go out and mix with people again.

I went to a Christmas fair on 17th and met my friend there. I actually did laugh and enjoyed being in company.

I totally agree with you in feeling lonely with other couples. I feel like the odd one out. I'm sure Les is with me, as Colin is with you.

Love and hugs Pat x

Baileyboo in reply to Baileyboo

Sorry NannaB my predictive text changed your name to Hannah


Pat xx

NannaB in reply to Baileyboo

No problem Baileyboo. Several years ago I typed in a friend’s name, Wendy Collins and predictive text changed it to Weedy Coleman. From then on (until she moved) that’s what she became known as.


raincitygirl in reply to NannaB

Thank heavens for you and Heady and our experienced Survivors....I get so much from you.

XXX Anne G.

Heady in reply to raincitygirl

Thank you, it's extremely reassuring to know that some of my "sxxt" has helped others avoid, at least a little bit, of the crap that goes with PSP, only together can we try to keep on track.

Sending big hug and much love

Lots of love


NannaB in reply to raincitygirl

❤️ XxxX

Tippyleaf in reply to NannaB

Dear Bev

Thank you for sharing- you are an inspiration. I know it has not been an easy journey but your positive approach gives such encouragement to so many of us

Love Tippy xx


The first year is the worst year. Every holiday or meaningful day is the first without him. It does get better but it is a slow process. The raw pain will lessen with time but you will never stop missing him. I went through this once before. I am not looking forward to going through it again.

Baileyboo in reply to Hidden

Thank you for your reply Jeff. The first year for me has been horrendous. My own health plummeted, I was made redundant but won at the tribunal, not a vast monetary value but so worth it for the principle. My son doesn't visit with my 5 grandchildren now. I don't know what I have done. Then to top it all my daughter's ex bofriend set my car on fire as my daughter's car wasn't outside the front. He has been arrested.

I pray my 2nd year will quieten down. I am beginning to feel like a sitting target. This sounds so dramatic but surely nothing is going to happen now.

I was very worried that my car burning would lower the tone of the neighbourhood. Silly really but it did go through my mind.

Are you facing losing another person Jeff? I sincerely hope not as nobody deserves that.


Hi Pat, like the others have said, the first anniversary is the worst. Well I hope so, as my second, on the 28th Dec, is looming.

Of course everything seems harder, the longer you have been apart, the more you miss them. I don't think that will ever go, not sure we even want that feeling to go.

There is no rule that says "Thou shalt visit one's husband grave" It should be when you are ready, or feel the need. Steve was scattered, I have only been a few times to the place. Apart from the view and it's a lovely walk, with nice memories, I feel no sense of Steve. I get more indoors, I feel no great urge to attend him regularly. I will go up on Christmas morning to place a rose. The actual day, I have booked to be out of the country, hopefully in the sun, having fun! If people disapprove, hard luck!!! It's my life and it's not them that sits alone, crying for their loved one. We each deal with grief differently, the only correct way, is YOUR way, don't let anyone tell you different.

I am coping a lot better now. I try and fill my days, like NannaB has said in her reply. I have been on holiday on my own and NannaB and I went to China, earlier this year. Unfortunately only you can reach out and find something that suits you. A lot is trial and error. I work on the premise that nothing can make me feel worse, usually (!!!) any company is better than none.

Keep in touch, post or reply. There are lots out there that need your advise and support. This post of yours, will have helped someone who is feeling just the same. Just because you are now on the other side, doesn't mean we can't still be there for each other.

My heart goes out to you today, but experience has taught me, it's the anticipation that's worse than the actual day. That's just the same as yesterday was or tomorrow will be.

Sending big hug and much love

Lots of love


Baileyboo in reply to Heady

Thank you Anne, I am trying to go out now. The weather rules at this time of the year and November is is so dark and miserable.

Life does go on and I am lucky that my daughter met a lovely man this summer and he is incredibly supportive. He asked me if I wanted a hug today but I said I was fine. He saw through me and hugged me so tightly. It's strange he is so like Les in so many ways. A comment or a look and I see Les. Maybe this is his way of looking after me.

We spent the afternoon laughing at things Les had done throughout our life together. Fiona was laughing too.

I feel very blessed that Paul came into our lives. He calls me mum, never Pat. I don't mind as he cares so much for Fiona and includes me in that at times.

It did me so much good that 2 hours had passed really quickly. My friends on here are incredibly supportive too. It's strange that we have all been, or are going through, the worst disease.

I am very pleased that you and NannaB are such close friends and hope you enjoyed your holiday together.

Thank you for the messages, it's nice knowing people care. On this forum they certainly do.

Love and hugs

Pat xx

Sending you love and strength to carry on. He was lucky to be loved so much.

Baileyboo in reply to JodiP

Thank you. I was lucky to love and be loved by him.

He had his faults as we all do but losing him is so hard. He was everything to me and I will struggle without him. I will, hopefully, find my way out of this horrid time. I will always carry him in my heart.


Pat x

Its hard, Pat and you have had more difficulties to deal with.

I agree it is important to grieve in your own way.

Its just over a year for me too. We were married 55 years. I don't think we ever heal but we get used to living with the " hole ". I also find it most difficult when with couples or family as it emphasises my singleness. Our sons wedding was difficult.

I go out and meet friends and family but there are many things I have not done. I haven't disposed of his things.

I now have such vivid memories of him pre-PSP - a mixed blessing.

But if we can survive PSP we are survivors and it will ease after Christmas - I tell myself !

Big hug, Pat from a fellow survivor.

love from Jean xx

Baileyboo in reply to doglington

Thank you Jean, we are survivors in our own right.

Not a nice thing to deal with such a loss, but PSP doesn't have any rules. It just does rule. Not only are we losing a loved one but in the way they suffer. It's a vile disease.

Love and hugs

Pat x

Tippyleaf in reply to Baileyboo

Sending lots of love and a big hug

Tippy xxx

I am so sorry about your Les, it is such a crazy struggle....I was wondering how long Les had PSP, when did you first notice symptoms and when was he diagnosed? Was he ever exposed to toxins?

I stuggle every day trying to make sense of such a cruel thing as this. We have been to many Dr.s all giving us the same response. “Nothing we can do”. I am continuing to work on Bob’s nutrition and supplements to heal his brain....he actually does show some signs of improvement occasionally...I get super hopeful and then he says something really goofy and my hopes are dashed...I am taking an antidepressant just to get by, I am highly against that kind of stuff, but I really wasn’t doing well....

Do you have family? Do you have support from friends?

Hi, thanks for your reply.

Les was diagnosed approx 3 years ago. I believe he had it for some time before. He had been diagnosed with Parkinson's 5 years ago. The falls increased and other odd things were there but we didn't know what was yet to come.


Pat x

It will be a year since we lost my dad too in the next few days and both my mum and I can relate to so much of what you say. It doesn't seem to be getting any easier, in fact, it feels more difficult and we're both becoming pretty withdrawn. Everything seems like too much effort. The cruelty of it all seems too much to bear sometimes and there's no making sense of it. Trying to focus on the pre-PSP memories helps for a while, then somehow that seems to intensify the feelings of loss. Can't win! Sending love x

I know exactly what you're going through. My sister is with me every day. I miss her so much. I talk to her and tell her everything which is going on. Lifenot the same without her. It doesn't get better you just learn to deal with it xxx

I’m only 5 months but like you it’s not better I just live with it. Everything you said I can say too. I’d want to give up too and there isn’t anyone that truly understands or cares. Their busy lives keep them away.

I keep praying and hoping it won’t be long until we see each other again. I’ll continue to think about you as we are all in this together and sending love and hugs.


Baileyboo in reply to Cuttercat

Hello Cuttercat

Thank you for replying to my post. I am sorry you are in the same place. This disease is vile.

I am 1 year down the line but at times I wish I was with Les. I know he would be so angry with me for thinking this and that makes think again. Finding reasons to carry on, I am sure must have entered many of us in this forum. It isn't any comfort but I always receive hope and love from everyone here. I guess at some point I need to remember life does go on. I hate that sentence so I don't know why I have used it.

I think that feeling nobody else cares as they are busy with their own lives is a thought we must all get. I know it isn't true but dismissing it is hard.

I will be thinking of you and send much love.

Pat x


Your post resonates with me. It will be 5 1/2 months since my wife passed from CBD. I am not looking forward to Christmas. I just seem to be plodding along.

I am envious of your 43 years. I only had my beloved 35 years.

Prayers of peace and comfort over you,


Baileyboo in reply to Beads0122

Hi Bobby, thank you for your reply.

I am so sorry your loved one passed such a short time ago. The time we had with both of our loved ones is precious no matter how long it is.

It is the time we are both facing, along with others in this forum, that we have to face now. I know how you feel about any special days. I personally dread them too. Each one holds memories of Les and although they are lovely, they hurt like hell.

Plodding along is about the best we can both do. Each day is a struggle as you are alone for the first time. I hope you can find a way forward too. I'm still looking for mine. I know it's out there somewhere.

Take care of yourself. You matter too, but the first few months are the toughest. Keep in touch with everyone in this forum. Although they can't take the pain away they give help and hope to us.

Love and hugs


Cuttercat in reply to Beads0122

I doesn’t matter how many years. Some people have 60 years with nothing. Treasure each one I had 26.

The pain never ends.


Hi Pat. Your post is almost a carbon copy for me. I lost my Dear Wife just a year and a few days ago because of PSP. It has been the worst year of my life and although surrounded by good friends, I still feel so lonely and lost. The tears sometime just burst through. Nno controlling them. She will be annoyed with me for standing still but I was married to her for just short of 49 years and you cannot just leave that behind. Keep talking to Les. Tell him your troubles and your joys. He will get your message. I pray that we both can find some peace despite PSP. Stay strong Pat. Sending hugs and prayers for you. God Bless.

My heart goes out to you


Baileyboo in reply to Hiking13

Thank you xx

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