Psp

[Glyder]

My dad has psp.he's in the final stages just getting over a chest infection wasn't sure he was going to pull thro but today showing signs of an improvement .how do u cope watching a loved one with all these awful illnesses around I'm finding it real hard debbie

[jillannf6]

hi debbie

so sorry ur dad is not good - i have PSP and am falling over too many times a day - had a great day on thursday (only 4 falls ) but today i had 6 b4 9AM so am not doing much today apart from sit and watch the Rugby league final on TV

(good that i can still do this i know )

and i am GOOD about my condition most of the time - i know this is of no help to your family or your dad =how long since his dxs??

lots of shorthand in this reply as my typgin (!) gets more dyslexic by the day

hjus ts to say i am thinking of you and your dad

lol JIll

hugs and xxxx

[Glyder in reply to jillannf6]

So sorry to here u have psp there's not a lot about this illness my heart goes out to you. He was diagnosed with it 2007.kept walking into things and then came the falls myself and my sister was looking after him in his home but 2 years ago couldn't cope anymore he's at the stage where he can't drink and it's slowly filling his lungs hence chest infections. But thro out all this he manages to smile . I hope everything goes well for u and il be thinking of you xx

[Mamma1932]

What are the signs of final stages?

[Glyder in reply to Mamma1932]

The final signs of the illness is he can't see his legs don't work leans to the side and the muscles contract and he will grab things and not let go. He can hardly speak and the muscles in his throat are weekening so he finds it hard to swollow and some of his food and drink go down the wrong way and it is slowly filling up his lungs. We thought we were going to loose him on Thursday as he developed a chest infection and became very poorly they put him on a 20 ml dose of antibiotics and he is on the mend and I thank my lucky stares for every min of every day we have with him xx debbie

[NannaB]

Welcome to the site Glyder, I know you will find it a help. You won't get all the answers you want but at least you can communicate with others in a similar situation. How do we cope? We just do don't we. I cope by keeping in contact with friends, getting a few hours a week to myself to do what I want, with the help of sitters, taking my husband out somewhere nice at least twice a week, exhausting just getting out and then pushing him in a wheelchair but when I ask him if he wants to go and after, if he enjoyed it, both thumbs go up. I try to make each day as interesting for him as possible and make sure I find something to laugh about every day. There is usually something to cry about most days but I'm fortunate in some way that I usually see the funny side of most disasters in the house. So does my husband. Many times he has been on the floor, laughing at me trying to get him up. He can't speak but he can laugh.

Things won't get easier I'm sorry to say but make the most of all the time you are with him and hang on in there.

Best wishes.

Nanna B

[Glyder in reply to NannaB]

We try and take him out like going fishing it is something he used to luv doing but it's hard as he can't see anymore but he does smile thanks very much for being at the end of this phone and making me feel abit more positive Debbie

[NannaB in reply to Glyder]

It's a shame when the eyesight goes as well. My husband has his eyes closed most of the time but can still see but as his chin is on his chest, doesn't see anything. I have an Ipad. When we go out I take photo's on it of things I am looking at and then put it on his lap. He opens his eyes for a moment and can see the picture. He always puts his thumb up when he has seen it. I also let him smell the flowers as we like going round gardens. Anything to keep the senses alive.

Take care. X

[Glyder]

It's awfull watching a loved one suffer my dad likes the smell of flowers and he loves me pets so when he comes to me house he holds them u have to try and keep there life as normal as possible keep up the good work with ur husband and I wish him all the luck in the world xx

[groovychick]

I felt the same, especially at the end stage when there wasn't anything else I could do but be there, felt so helpless. I couldn't believe I was sitting next to dads bed holding his hand in his final hours and watching him take his last breathes...it was heartbreaking.

[Glyder in reply to groovychick]

I don't no how u came thro it . It has to be one of the hardest thing u ur do in your life the end stages is a waiting game u never no when that call is going to come I'm dying inside but trying to put on brave face. My heart goes out to you and knowing one day very soon I'm going to be going thro the same thank u I no I'm not alone xx debbie

[groovychick]

You are definitely not alone my dear, we are all here for you, anytime xxx

[Glyder in reply to groovychick]

Thank you xxx

[jimandsharynp]

Debbie, This disease tests us all who have to deal with it. I tried to concentrate on only the current day and it worked pretty good for me. I didn't worry about past or future as they can't be controlled or changed. Try to stay strong for all around you, including friends etc. They are watching to see how you hold up. If you show strength it will show others that when trials come in their lives they can survive them. My grandkids were watching me I know. Now is the time to do all you can, say all you want to say. If you do that and do your best (we're not perfect) you won't be filled with regrets later and second-guessing your actions. Hugs to you!! Jimbo

[Glyder in reply to jimandsharynp]

Hi jimbo I no I have to stay strong I laugh and act as if I'm life and sole of the party but deep down its tearing me apart. Just got back spent a few hours with him he can't do anything for him self so I'm there to look after him as he looked after me. And the girls in the home where he is being looked after are amazing wth him and he always give. Them a smile xx debbie

[Hidden in reply to Glyder]

Dear Glyder,

This really is a most heart breaking time. I have just been through it with my Dad. I just kept as close to him as I could to let him know that I was with him and stroked his head and arms and shoulders to try to relieve the tension in his muscles, and talked lovingly to him telling him what a wonderful father and husband he had been etc etc. There was nothing else I could do. Actually, it is taking me some time to recover from it all but you do at least have your sister to share things with and you must do this to support each other and use us here on the site to help you keep strong and get you through it. It is a wonderful site with amazingly kind and helpful people here to offer help and encouragement. Best wishes, A . Unfortunately, I could not keep smiling, I just cried and cried and was glad when his suffering was over.

[Glyder in reply to Hidden]

Hi Nader so sorry for your loss my heart goes out to you and everything you've been thro. Until I found this site I felt alone every one I spoke to hadn't even heard of psp the doctors say it's rare I don't no how u develope such an awfull illness? But this site has helped me so much it doesn't stop the tears flowing 24 7 but it helps to no your not on your own and not suffering in silence thank u thinking of you at this sad time xx debbie

[jimandsharynp in reply to Glyder]

My heart aches for you and your family. This is such a bad disease and tries to ruin everyone it touches. However, we can be strong and NOT let the disease define us. It is so easy to change who we really are and be re-defined by PSP. Please, don't let that happen to you. Stay your own self and handle things as the "real" you would do it and you will be fine. My heart goes out to you and your family. Stay strong! Some eyes that you are not even aware of are watching to see how you handle this situation. Set an example!! Hugs and xxx to you. Jimbo

[Glyder in reply to jimandsharynp]

I find it so Hard seeing him like he is and the not knowing how he is going to be from hour to hour it's a constant watch on ur phone I put on a brave face but deep down it killing me to, it's the hardest thing I've ever had to do I hold his hand and make out everything ok I never thought an illness would be so unkind . Thanks jimbo I no whot I have to try and do xxx

[loppylugs5]

so sorry for everyone,at least my husband has seen nearly 80 years so we have been blessed.I feel so sorry for the younger ones when I am not feeling sorry for us!Today not stop rain, two bros having chemo and toothache for Des what a bank holiday but keeping on trying to find an incentive to go on for him. we are in this together!!p

[Glyder in reply to loppylugs5]

Hi sorry to here your sad news I hope your brothers and your husband will be ok. Thinking of u and you take care and look after your self keep strong xx debbie

[lindsey48]

Thinking of you, we are here for you x

[Glyder in reply to lindsey48]

Thank u for being there for me and everyone else xx

[Ld60]

Hi Glyder. Absolutely breaks my heart to hear how this awful affects so many. Reading about your dad is like reading our story at the moment. With each fall or choking episode I question my strength and feel that I can't take much more. I keep trying to keep it all together because I know my family think it's me that's the strong one. I hold them and tell them it's going to be ok and that he needs us to be strong when inside I'm falling apart. I get angry and wonder what we did to deserve such torture. Please find some comfort in the fact that your not alone. Stay strong. Lots of love.xx

[Glyder]

Hi I have to hold it together don't want him to no how it truly makes me feel I do shed tears but he can't see any more. Saw him today and he put his arm around me the first time in years when I left I just fell apart I cry my self to sleep nite after nite everyone on here r so nice and it realy helps to have someone to talk to I realy do hope u get thro this luv to u all xx

[wifemo]

Hi Debbie -

It is hard, but it seems you are doing all you can. I used to ask my late husband for a cuddle - it was something he could do for me, and it made us both feel better.

Your pets are helping your dad too.

Thinking of you and willing you the strength to keep cheerful.

Mo