PSP Association

small steps

It's 4 months now, and the world moves on.

It's 4 months now, and the stuff we moved from the nursing home is still in the back bedroom, untouched.

It's 4 months now, and I still panic when the phone rings late in the evening.

It's 4 months now. She's still gone.

It's 4 months now, and it feels like '2 steps forward, 1 step back'

It's a slow process. As it should be.

More moans from my own blog below


9 Replies

Hi Fiona

When my husband died four years ago after seven years of PSP I sat beside an elderly woman in church one day. I asked her, "Does it get any better?" She answered, "The loneliness doesn't go away, you just learn to live with the loneliness"

How right she was. This is a very sad time of year because we all have wonderful Christmas memories. I have a new little grandson who has helped me regain in part the will to live which I had lost after Luigi died. I wouldn't worry too much about the things in the back bedroom. I still have a few of Luigi's things which I will never part with. I told my children to dispose of them as they wish after I am gone.

You are in my thoughts.




Dear All

Could I just say that not everyone feels such deep sadness, grief and loneliness after the loss of their loved one.

My husband died from PSP earlier this year after 38 years together. We knew what the future would bring eventually and I knew I was going to be left alone. At first when the inevitable happened, I felt such massive loss. Grief, fear and emptiness took over and I felt numb. For seven years my life and his, had been taken over by PSP.

After his death, the world alone seemed such a scary place. With all my family at opposite end of the country and after losing touch with many friends and neighbours as so often happens, I knew that only I, myself, could begin to turn my life around. I just had to LIVE again. Richard had once said to me, "I want you to live life...and drink the wine...for ME!"

I was frightened of falling into the depths of dispair and grief so was determined I had to continue to put on a brave face and get out there and confront my new world.

Now here I am more than 7 months down the road and I am feeling optimistic about the future. I can't believe that I am still okay and coping well just as I did when Richard was ill. Could it be that Richard is still here with me? Sometimes I feel like a hand is on my back 'pushing me forward'. (Maybe Jenny would have an idea about that?) Yes, there are days when I think of him a lot and I get a little weepy. He was a very positive person and he made me the same. I look out and see the world going on around me as it always did. Then suddenly I feel this 'push' on my back again and know I want to get out there again.

I really hope that all of you who are grieving eventually find inner peace.For some it takes a long time I know; for others it doesn't, we are all different,

Thinking of you all


Maggie x


Hi Maggie,

As you say we are all individuals (and thank goodness for that!!!) and we all grieve differently. I'm so glad you have found a way forward and hope you go from strength to strength!

Thanks for sharing with us

Take care

love Kathy


As always, Maggie, you talk great sense :) When our health and circumstances mean we have the opportunity to live life to the full, we should!

I chug along with good days and bad, laughter and tears, positivity and sadness. Life is far from all gloom and doom; I blog about it all, but maybe I'm only putting links to the sad bits here!!


Hi Fiona,

Thanks for sharing with us. All I have to say is -

"one day at a time"

Take care of yourself

love Kathy xx


Thanks everybody; I know it's a process, with ups and downs. We can't rush it or make it happen differently, it just is what it is. We work through things our own way- sometimes we wallow, sometimes we conquer the world!



hi fiona/ maggie /kathy

you r all so right

i have psp and try and take each day at a time buu have a calendar with events nto jus trelated to PSp = some do not happen as i am not well enoguh at the time but there are no regrets

i have in fact tbeen a more positive person since havign been diganosed with psp not that i wanted to eb todl i had an untreatbale progressive disease }

BUT there are worse things out there in life to have to deal /cope with....

love jill


ps my sleep or lack of it and agitation are big problems at the present -being addressed by the Doctors_ hence these early blogs!


Hi Fiona,

Just to say I'm thinking of you and you're an inspiration to all of us.

Hannah x


Hello All,

Our phrase is 'Just keep breathing in & out'

We are not looking forward to Christmas - our last one was so sad but at the same time we start to move one.

Sometimes,I almost feel guilty when i realise that i haven't thought of my father during the day but on others small things will remind me of him & I smile to remember he twinkling eyes & smile.

I sometimes think my mother is doing too well - she keeps herself so busy, almost to the point of not allowing herself to stop & think. But as someone above said - everyone is different & we cope in different ways.

best wishes


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