A word to say. THANK YOU ALL💘

Well i have been on that site for 9 days now.. i have to admit that you all have changed my life to the best in a very short duration my thoughts to my father differed and thanks goes to each of you.. i read most of your posts.. i understood more about psp from your valuable experience. However i have been reading so many articles about PSP but the tough medical terms and symptoms differs completely than the life of those who lives the reality.. i really appreciate being here.. i became more calm and so my dad and my mum.. life is getting better ALhumdilAllah as long as we face this disease together.. My prayers are for you..You are Allah reply to all my Du'aa and calls of relieving this load of me.. Stay safe.. hope later i can meet everyone and thank you personally. LOTS OF LOVE.. MAI 😍😍😍😍

27 Replies

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  • Hi Mai, none of us would survive without this site. Certainly has got me through some pretty miserable days. Just to know there are others out there, who totally understand what I am going through, is an enormous help. I can say exactly what I am feeling and nobody judges or starts worrying about me, like my family would do, if they really knew about some of my thoughts!

    Where abouts are you in the world?

    Lots of love

    Heady

  • Heady you are so right about people here not judging or worrying about me. In fact, let me add that there is always someone here to reply me without being busy or bored of complaining as some of our relatives or friends might do. Love back heady xxx

  • Lol heady, yeah my family would think I'm crazy, which I probably am, but I love being able to share my most innermost thoughts, worries, rants and occasionally good things....I certainly wouldn't survive this journey without all of you!! ❤️

  • Exactly how I feel. This site has saved my life! Love back to you, Mai.

  • Me too without this site, I would more than likely had left and not told anyone where I was, joking apart you all have keep me sane, sending you all a big hug Yvonne xxxxx

  • Before this site yvonee. It crossed my mind alot to leave but i am still here :)

  • Has saved all our lives easterncedar.. xxx

  • Hi Mai

    Yes, this site informs me, gives me support and generally keeps me going.

    I'm glad you've found it helpful too.

    I hope you post more here.

    Warmly

    Kevin

  • I will kevin.. thanks xx

  • I am glad thiat you found this site and you have found relief....reading all of the academics about a disease does not do anything to console or relieve.....reading all of our experiences allows the fears and pain and anger to not be so filled with guilt but understanding and comfort....Keep us in touch with how your mum and dad are doing Mai...and please tell us how you are doing.....

    AVB

  • I will keep you updated AVB. thanks xx

  • It is such a wonderful site, I have learnt so much and have become a stronger warrior because of it, I read the posts and I am just so late that I am days out replying and don't always, but, I know it doesn't matter, everyone understands, thinking of you, all of you xxx

  • Yess nanonthenet1.. we all understand.. Dw. Xx

  • I can identify with the time bandits. I don't post as much as I would like .When I get a spare moment I normally stand against the wall and go through all the posts. I find sitting down difficult because when B is stressing or needs attention I am still alert. I sometimes start a reply or post but don't always send it. I very rarely sit down........even at mealtime but that's a different story all together. Maybe another time.Thanks to all who read,respond or reply even though late.I understand take care

  • Thank god for this site. Its my lifebelt. As Heady says we can offload here rather than our family, and know how every one really understands.

    Jean x

  • This site is a tonic. You are amazing individuals it is a place to laugh cry and just be ourselves no matter how high , low or scared we feel .

  • Bless you Mai I'm sure you will make lots of new friends on this amazing site and equally gets loads of brilliant advice and support x

  • Thanks Satt.. i am sure too..xxx

  • The people of on the forum are absolutely wonderful. I read the forum everyday, don't always post as i don't have the knowledge and experience of some of the others. Someone is always there to answer a question and they are a great deal more helpful than the health professionals we have to deal with. A wealth of knowledge and support. A big thanks to everyone!!

  • Hi am2015, of course you have the knowledge and experience, if you have a loved one with PSP. For most of us, it's the fact there is somebody out there, knowing that this evil disease exists, helps more than any practical advice. Which lets face it, nobody takes anyway!!!

    PSP is a very lonely illness, it takes everything away from the sufferer and Carer, then the added insult, nobody has even heard of the disease and can't understand all its horrors. That's why this site is so wonderful, we all know and understand and the more everyone joins in, the better the help and support we can all rely on.

    Please feel free to rant and rave and tell us how this illness is affecting you and your loved one. Remember we have lots who do just read, so any snippet of what you are going through, is bound to help someone.

    Sending big hug and lots of love

    Heady

  • Nobody warned me about the social isolation.....I getting all emotional now losing focus.Has anyone else experienced this where family and friends drop off the planet because they can't cope with what they see.

  • Every single one of us, on every single day!!!

    Partly our fault, or should I say PSP's fault. Life makes us stay close to home, toilet problems, eating troubles and the lack of movement, make its hard to get out. We all know others struggle, don't know what to say, what do you say to someone who can't communicate? Different people react in different ways, some put their heads in the sand, others run for the hills. In some ways, they are victims of PSP, the same as us, but yes, I get where you are coming from. There are people, who should be there with you, getting their hands dirty, taking some of the responsibility. S's son is a classic example, has run for the hills and is digging the biggest hole for his head!!! It's almost as if he is blaming his Dad, for putting him through the awful ordeal, that he is trying so hard to ignore. Sorry, I will rephrase that, he is blaming his father and is far more worried about catching it, than to even,for one second, stop and think what S is going through. As for helping, well S has me, I choose to marry him, so have to put up with the consequences!!! Bitter, me?????

    So yes, in answer to your question, all the bloody time!

    Sending big hug and lots of love

    Heady

  • Heady .. you are just telling about my sister when you mentioned S's son as if she is only watching us from a window.. not offering any help.. her excuse was that her husband and childrens keeps her busy all the time but even the time she spend with us.. she stays away.. once i told her why dont you come inside to change dad's daiper.. she said" how can i change it?!!!!" uhhhh... nothing to say back and now she is pregnant making that another big excuse for her not to be around.. but after all i began to look differently at this, thinking that Allah made me close to my dad -maybe at his last days- to give him actual help.. this made me closer to Allah asking for only his help and he keeps me going elhamdulilAllah... I guess thats "Indeed with each difficulty comes the ease" ...Actually my sister may regret later for not sending time with dad or even help him in a way makes her feel better and satisfied about her self when he became a memory . No one knows. Heady.. sending you big hug..knowing exactly what you feels..xxx

    Homesupport.. sorry for the shock but social isolation became a fact by time .. take care ..

  • Funny how people don't want to come around because they have to face the inevitable and can't. We all will get there someday.

    It's sad and I'm lonely, even though I work - thank God, but nevertheless I am lonely.

    Friends call but noone ever visits. Afraid I guess.

    Love,

    Cuttercat

  • Dear Cuttercat..let me tell you that knowing that friends and relatives wouldnt dare to come and carry some of my burden makes me feel lonely and helpless, however it still gives me more strength that i CAN do that and still have a normal life as much as i can.. taking a break out of home.. work.. chatting with friends... posting in this site even driving my car away all helps and gives a push forward...Stay strong.. have faith.. be safe and remember we are all here for each other..you are not alone.. take care xxxc

  • Thank you so much Heady. You guys really are wonderful.

  • This site is a massive support for all of us, don't know what I would do without it. It has prepared me for the next step of this disease, it would be such a shock to be confronted with the changes without the knowledge provided here. Also great to get things off your chest, no matter how trivial it may seem. Keep posting with you experiences.

    Love Kate xx

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