PSP Association
5,295 members7,286 posts

Feeling hopless

Hello all I prey you are all ok. My husband Charlie seems to be good ng down hill, we moved with our daughter she is doing everything to keep him going. We have going to an holistic Dr. Who is really doing his best but when I hear things like sorry your husband is far in to PSP for him to join a clinical trial all my hope just gos away. The dr has him on this gaps diet it’s a lot of soups it’s supposed to take away the inflammation and pain. So far no luck :( his retaining water his feet are so swollen I feel him slipping away.

Margie

35 Replies
oldestnewest

Oh Margie I hate psp so much, the coughing and choking is horrible, George passed out again today when he was coughing, so sad, I can feel the sadness in your post sending you a big hug. Yvonne xxxx

2 likes
Reply

Oh, Yvonne - Hugs

It is so hard.

Kevin

xxx

1 like
Reply

Kevin you have a good weekend hopefully, love to Liz xxxxx

1 like
Reply

Thank you Yvonne Charlie past out the other night for the first time, while he was eating pudding he stared tp choke scared me so much, my son in laws mom knew what to do thank god. I hope you and George have a good week end. I feel your hug xxxx back at ya. Guess we will see what the doctor says next about all this.

Reply

I feel for you both Yvonne, I hate this cruel illness !!!

xx

1 like
Reply

I really hate it as well, went out for a family dinner for our anniversary at our daughters, he was so agitated , we had to leave early, after looking so forward to the anniversary dinner. Yvonne xxxxx

1 like
Reply

So sorry to read that, Yvonne. I know how much it meant to you. Its a cruel disease. Big hug from Jean xxxx

Reply

Oh well bloody psp won again xxxxxx

Reply

I wanted to have photos taken but we did none of that, maybe it wasn’t meant to be a memory to save, sorry feeling sorry for myself today xxxxx

Reply

Not surprised Yvonne but at least you gave it a try, many of us wouldn't have done that so 'good on yer' just sorry that you couldn't see it through to the end of the gathering and get some precious photos. As for the choking it's so bloody scary, Ben hasn't passed out yet but been close. What is your way of dealing with the choking when it happens?

Reply

Hit him on the back and keep calling him, I hate it so my Katie feel like life is bloody unfair, he is agitated today, I have a bad headache our career has a sickness bug, he keeps calling me I feel like my head is going to explode, oh dear feeling very stressed xxxxx

1 like
Reply

Sorry late replying Yvonne but I hope you are having a better day today. We had our son and two grandsons over Easter so it was full on and I'm shattered now. As for the choking, that's what I do Yvonne, it's very scary for us and so distressing for them. There was a programme on the radio today about our attitude to death and how medical advancement has affected the way we view it. I ask Ben if he would welcome death and he said ' yes, definitely' so I know he still has the same view about medical intervention. I feel guilty that I sometimes feel that he would be happier to free from the shackles of PSP, the suffering must be unbearable, a slow long lingering death is not a good thing. Feeling a bit morbid today as you may have guessed I so hate this trap that we are caught in, my son saw a decline in his Dad's health even though it was only three weeks ago that he last came. It's now quiet in the house and we are left alone to travel this lonely road.

Sending you much love and a big hug

Love Kate xxx

Reply

Kate so happy you had some of the family over for Easter, lovely tired though when they have gone. We had our anniversary party on Saturday george was so agitated, they were no photo taken. Had to be taken home, I hate psp so much, have felt so stressed since then. Yvonne xxxxx

1 like
Reply

Sending you a massive hug Yvonne, I'm not surprised you feel stressed amongst other emotions too; disappointment, sadness, anger, envy, emotional fatigue, pity, loneliness, hopelessness (the 7 deadly sins spring to mind!). I do hope you got some pleasure from the celebration as I know you were so looking forward to it. I know you have a very supportive family and that counts for so much.

Love Kate xxx

Reply

Yes we had a lovely time, our son in law did us proud with the food, just sad we didn’t take any photos, but hey ho it doesn’t really matter xxxxx

1 like
Reply

Charles did the same with the car ride. Tried to get out to go home. Change of scenery not good. He lkes routine. Tired and sad for him.

CT

Reply

Oh cuttercat feeling so sad this last couple of weeks, yes I think you are right about routine, life is so unfair xxxxxx

Reply

Oh that sounds scary to witness Yvonne. Hugs

Reply

Yes it is feeling stressed today life is so unfair xxxx

Reply

It is very unfair. Hope tomorrow is a brighter day

Reply

Everything crossed xxxx

Reply

I still have hope for George. So many things to try and I'm sure you've tried most.

Charles uses the nebulizer machine with saline 4 - 6 times a day, it helps with the coughing. Only non dairy foods. And not too much fluid because the coughing starts.

Let me know how you are doing Yvonne, we are still fighting.

Cuttercat

Reply

When we used the nebuliser it made him worse. When he coughs I tried the natural yougurt seems to help a bit, but nothing seems to work. We are fighting and fighting, if this was me coughing and choking I would not want to carry on, sad but true xxxxx

Reply

Oh, Yvonne ! It breaks my heart. I do share your feelings and it must be so hard for you. Big hug from Jean xxx

Reply

Jean just don’t want him to suffer like this, it is heartbreaking, you now what we are going through, it’s so hard. Sending you a big hug beautiful lady, have the family over on Sunday it is Greek Easter so I am cooking and baking, children have put there orders in for the favourite Greek dish xxxxx

Reply

Hi Yvonne, so sorry you are having such a rough time.

Sending big hug and much love and all the strength I can send across the ether.

Lots of love

Anne

Reply

Thank you Anne much needed hug, have a lovely holiday will be thinking of you. Xxxx

Reply

Sounds good. Went to a Greek restaurant last week with our sons and had the mezes. Really good !!!

Hope George can enjoy it too.

xxxxx

Reply

Glad you had a lovely Greek meal, I am sure he will xxxx

Reply

We changed to only saline in machine. No albuteral ever. As many times a day as needed. Plus Zantac for esophagus. That said I hear Charles coughing now. Enough said, its the worst part, feeling helpless and hopeless. I'm with you in spirit and send love.

Cuttercat

Reply

Well I feel for you, George has been making strange noises since 3.15 this morning, coughing wheezing, I am sure it is not an infection. Myself I feel rubbish my throat is killing me, I think I have the cold back again, so tired no sleep again tonight xxxxx

Reply

Dear Margie,

I'm sorry to read your post. It sounds like you have reached a very painful time - maybe even a desperate time. Wish I could send you a relief....but only have a listening ear (or eye?) and a hug for you.

Hang in there XXX

Anne G.

2 likes
Reply

Thank you Anne it’s good to know I have a place where I can be herd, bless you for your kind words. Xxx

2 likes
Reply

Sorry that you find yourselves in the horrible position Margie, it seems to go from one awful scenario to another and it's difficult to keep up with all that is required to keep them as well and painfree as possible. Sending you a massive hug, think you may need one.

Love Kate xxx

2 likes
Reply

Sorry to hear that, Marg52

Its depressing to feel there is nothing to help, I know.

What you can do is make him feel important to you all. So you are doing the most important thing for him, aren't you ? I'm sure he feels loved.

Big hug for you. I know its needed !

From Jean xxx

Reply

You may also like...