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PSP Association
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I discovered this on my mobile this morning

I was just browsing on my mobile and felt this is so true.

Today is a bad one but I know I will get through it. As we all do on here. Boy it is so tough.

PSP is so evil and just comes in and takes over.

Now I will pull myself together and dust myself down. I will take my time and look my best as I have an interview today.

Sending love and hugs to everyone

Pat xx

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Bless you pat

Good luck with your interview I will be keeping my fingers crossed for you

Love Lynda xx

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Thank you Lynda xx

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Big Hugs

Tim XXXX

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Good Morning Pat,

Best to you on your interview.

And may l say, "You look terrific!"...

Sending hugs of encouragement & love... Granni B

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Thank you Granny B xx

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Big Hugs

XXXX

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Oh yes. I know.

It takes me by surprise sometimes. Today I was breezing round the shopping centre and saw some men hovering outside the ladies toilets waiting for their lady. Tears sprang to my eyes because Chris wouldn't be doing that again !

How stupid is that ?

It just hits.

Good luck with the interview.

Love Jean xx

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Hi Jean,

It is so hard no longer having the person your world revolved around. Not in a bad way at all, it's having no one to tell things to. Nobody trying to get your attention to show you things. It's the most empty feeling and nothing eases it.

I had a friend visit me from Worcester, he was up this way with his work. I have never had such a visit since losing Les. Les and I worked with him 20 years ago. When he left he promised he will come again. I sobbed heart out when he had left because he is the first person who came just for me and it was really lovely to talk. I guess for a stupid moment I felt important too. This grieving is pure hell.

I will get to a point, hopefully, when I don't care how others feel as I can't keep going like this. Since Les left me I have felt it was my place to ensure those around me were okay. How stupid.

Well that's my news for now and I will stop feeling guilty. Without the support I have received from friends on here I don't think I would have survived.

Love and hugs

Pat xx

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Yes. I hadn't expected to depend on this site after Chris died but it's so supportive.

Big hug for you Pat.

Jean xxx

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A huge hug back Jean. We certainly have so much support here and it is a real comfort to have. No matter what is hurting us, we are never alone. I think we are incredibly lucky to have friends here and that we know are always there.

Pat xx

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The site and our friendships help tremendously. I’m so grateful

Cuttercat

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Dear Jean it's not stupid it's only natural I feel like crying we can be having coffee or just walking in the street and I see older couples holding hands and just gets to me sending you a big hug Jeanette x x

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Me too !!

Xxx

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All the time. Me as well.

Cuttercat

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It sure does!

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Oh how I identify with that, Jean. Everywhere I turn there seems to be couples. I was trying to explain to a friend the other day that whilst I am filling my days and trying to move forward, I feel totally lost, can't work out where I fit in anymore. She made the right noises but totally didn't get it. You have to be in our shoes to understand. Hey ho, next thing to get through is Valentines Day, followed by my birthday and then Rod's birthday, but get through it I will cos no other choice. Best wishes, Hils.

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So right Hils,

Feb is difficult for me - anniversary of both my parents deaths, my birthday and wedding anniversary.

Stiff upper lip in place !!!

You're right about understanding. I've had some assume that because Chris was so ill my main feeling is that I am free !! They don't understand I am lost - and am only now able to grieve the man I lived with for 50 years pre-PSP, as I said in my eulogy.

love, Jean x

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I call them GRIEF ATTACKS and I never know when I will be attacked and more often than not, what triggered my pain of sorrow.

On the other hand, they come less frequently. I always tell myself I'd rather go thro the loss and the pain, then to never have had my phenomenal son in my life.

As my son use to tell me, "IT'S ALL GOOD".

Blessings, Los Angeles, CA, USA

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IT'S ALL GOOD... one of my favourites sayings.

Big Hugs

Tim XXXX

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Thinking of you ❤️ Sad times xxxx

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Thank you xx

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Big Hugs

Tim XXXX

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That is lovely Pat. They pop out of your heart into your brain when you need them too. Good luck with the interview. Big hug AliBee

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Big Hugs XXXX

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Thank you Tim,

How do you manage to write a book when you have so much going on? You are an amazing man. It must be nice to have such a large family - apart from at Christmas when your bank account suffers. I mean that in a nice way not unkind.

I am sending hugs to you and your wife

Pat xx

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Hi Pat - I purposely keep busy... no time for PSP. It keeps reminding me of its presence. I don't live the life one would expect with the prognosis... I choose my own. I've kept a journal from day one, most of this is the material you'll find in my book(s). A larger family is nice, but it can also suck the life out of you too. Except for the grandkids they're a blessing and a joy

Tim x

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Thanks so much AliBee. I will have to wait for any news but the hard part is over.

I found it incredibly hard as I would usually come home and tell Les about it. Now I need to get back into a routine with the most important person not being here. It's a hard road but I have taken the first step.

Love and hugs

Pat x

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Big Hugs

Tim xxxx

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I know the feeling. Blessings to you. Thanks for sharing that sweet posting.

Cuttercat

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PSP has taken hold of my sister so I understand when you say it is 'evil'...I am going to have to learn how to 'pull myself together' and 'dust myself down' Thanks for showing your strength!!...Good luck with your interview Pat!!

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Thank you Skye

I won't know the result of the interview until next week.

I am so sorry to hear your sister has the worst disease possible. Please don't try to pull yourself together too soon. Try to smile, I know that is hard but I still can't pull myself together or dust myself down. PSP is vile and strips your emotions raw. You are not super-human, well maybe you are. Take a day at a time and face whatever that day brings. That was the only way Les and I faced it. It didn't help in any way as the result is the same. Take care of yourself as I still feel emotionally drained after 14 months. Living without my husband of 41 years seems impossible.

I will be thinking of you, but don't forget to talk in this forum. The people on here have been fantastic in their support for me.

Love and hugs

Pat xx

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Pat ...I have tears streaming down my face as I read your reply and the comments of those who have lost their loves ones..and how important this site is for getting encouragement and support...You are all wonderful people who have come through the worst journey in the world and are still able to support one another..My sister was just diagnosed in December after previously being diagnosed with Parkinson's two years ago..I found this site when I was trying to learn about this disease..while it is terrifying It feels like there is such a 'bond' here among all who are participating...sadly...as someone replied to my first posting..."welcome to a site you never wanted to be part of"!!....I know I will benefit from reading your posts and I am blown away by everybody's kindness ..openess...understanding...and strength!! Thanks to you all ...Liz

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Hi Liz

I am sorry I didn't reply last night. I was taken into hospital with horrible chest pain and a very numb arm. Although it all pointed to my heart the tests showed that my heart is perfectly fine. Thankfully. I think, along with the consultant, that my body is telling me to slow down as I am pushing myself too hard. I did have my first hectic week since losing Les and it said slow up.

I didn't mean to upset you and nobody here ever would. This is how vulnerable PSP makes us. I found this site in the same way as you did after Les was first diagnosed with Parkinson's and then PSP. There is no reasoning with PSP as sadly it makes all the rules. Every person here will try to help and support each other. They are all invaluable to me and I'm sure you will find the same.

Sending big hugs to you

Pat xx

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Oh Pat

That must have been scary for you last night. You have had it tough over the last month's

Grieiving for your husband is enough without all the ups and downs with family members and then the stress of going back into the world of job hunting and interviews .

Take care brave lady

Sending you hugs

Love Lynda 🌷🌷

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Hi Lynda

Last night was a bit scary but thankfully all the tests cleared up my fears.

I think I suddenly tried, in one week, to make the effort to get back into the working world. I will get there as I need structure to my days apart from the financial reward.

I know, or hope, that I am strong and this was nothing more than a hiccup. The real answer to this is to have Les back pre-PSP and that would the best thing, impossible I know.

A night in A&E showed the disrespect the NHS staff receive. They moved me out of the main part into my own room at 2 am and gave me a cup of tea. There is no need for people to be aggressive. I intend to make last night this year's visit and it is now out of the way.

Love and hugs

Pat xx

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Well I'm glad you got the all clear at the hospital.

I know what you mean about A and E not the calmest place to be in and it's certainly an eye opener.

We found ourselves in there at 6.30pm last Sunday. Mum choked on a tablet and at the insistance of the paramedics that's where we found ourselves until 3 am. The staff were all lovely and hardworking despite dealing with some difficult personalities.

I hope you have a peaceful week and that you hear some good news.

Just make sure you don't take on too much

Love Lynda xx

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Thank you Lynda. I tried to fit 2 weeks into 1 and was a bit silly thinking I could do it.

Hopefully I may get the chance to work soon. I can then relax. I just wish Les was here as coming home won't be the same. I would only ask for him to return pre-PSP as nobody wants to watch that struggle again. I would, like us all, never want to go through this again. PSP dictates to us what is going to happen.

We just need to use all the strength we can muster to carry on.

Love and hugs

Pat xx

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Oh Pat

I hope you feel better today. It's a mistake to throw yourself into the deep end !!

Surviving is what matters. Give yourself time.

Hugs from Jean xxx

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You are right Jean. I just pushed too hard so I will ease down for a while.

We are incredibly lucky with our NHS service they are so caring. If nothing else I have been given a thorough health check and passed with flying colours. I will, however, learn to be less impulsive. We can't do right for doing wrong at times. Admittedly I have been stupid.

Thank you so much for caring

Love and hugs

Pat xx

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Yes. I have always been impressed with the paramedics and nursing staff at A & E

We are all here to help each other.

Jean xxx

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Oh Jean if I didn't have this forum I couldn't survive. It's a horrible way to meet people but you are all fantastic support. Knowing what we are all going through helps enormously. All at different stages but very supportive. It sounds a strange thing to say but the closeness of friends here is what keeps me going.

If my experience can help anyone I will do my utmost to help.

Love and hugs

Pat xx

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Pat..so sorry to hear about your chest pain but thankful your heart is OK..although I know it's broken after losing your husband..Stress can mimic a heart attack so it was perhaps the warning you needed to slow yourself down...but that's easier to say than do I'm sure...Mine were tears that needed to be shed as I hold them in far too often...so thanks! Take care of yourself...Liz

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Hi Liz, I didn't realise that. Thank you for the information

I fully intend to slow down as I did get a shock. I am relieved that the tests proved it wasn't a problem with my heart.

Look after yourself too

Love and hugs

Pat xx

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So true,keep staying strong Pat

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I am trying Birdman but it's incredibly tough

Pat x

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Sending big hugs to you

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Nice message you sent. I hope your interview went well, and big Hugs to you! Sally

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Good morning Sally. Thank you for your message I have my fingers crossed.

Love

Pat x

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