Alarming change

[Meykat4]

My husband went to the hospital 3 days ago after he woke up and found His legs wouldn't bend. I tried to help him bend them but it was extremely difficult. He started panicking and couldn't be calmed down. For the past three days he cries and yells and cannot be comforted or get comfortable. He keeps wanting to change position and 5 min later wanted to change positions again . he is so difficult to manage the hospital is keeping him sedated with ativan. Very worried. Has anyone. Been through this type of episode?

[raincitygirl]

Oh Kathy, It breaks my heart to see your post, and the most knowledgable folk have probably all gone to bed. My husband had CBD before he died, but his immobility never got to the very rigid stage. He did experience freezing and we had some interesting moments with me trying to heave him into bed when he froze on his walker!

I imagine your husband is fighting the loss of control. I hope the ativan is helping him, as I can only imagine how very hard it is to be in his place. My husband had downturns (not as dramatic) and he often rallied back to some degree and had a new plateau for awhile.

Kathy I can only give you a big Hug tonight and hope that your husband rallies out of this latest downturn.

XXX

Anne G.

[Meykat4 in reply to raincitygirl]

Thank you so much for your kind words. They mean so much. My husband is still in hospital. They are keeping sedated all time bevause when he awakes he starts yelling and crying. I cant under stand his speech hardly at all now. The doctor is trying to adjust his meds to see if they can keep him calm when he wakes up. He barely eats or drinks now. Its looking very bleak. Thank you so much for reply. Kathy

[raincitygirl in reply to Meykat4]

We're here for you Kathy, keep us posted XXX

Anne

[Spiralsparkle in reply to Meykat4]

The sedation will really affect his brain ability to speak and also not eating and drinking. When a good balance is found it may help those situations improve.

[Meykat4 in reply to Spiralsparkle]

Thank you. I hope that it's the sedation making him act yhis way. It's comforting to talk with people who understand. Kathy

[Hidden]

Sounds dereadful for both of you. Hope it is only a temporary thing. The way this disease presents is endless.

[Kevin_1]

Oh, Kathy it must be heartbreaking for you and so distressing for him.

There are many reports of muscle stiffness here and in the literature.

If you have a specialist neurologist for PSP/CBD get the hospital to discuss the problem with them. The reasons for stiffness are complex and there may be something which will help.

As others have said, sometimes really acute symptoms do pass.

Please come back and let us all know how it goes.

Wishing you both the best at this horrid time.

Kevin

[Meykat4 in reply to Kevin_1]

Thank you for your response. It is such a horrible disease. I want my husband to get better but i know he won't. It's all a downward slide. Very depressing for both of us. Thank you so much for your support. Kathy

[Kevin_1 in reply to Meykat4]

No worries... We all help each other out here.

Yes, I never stop wishing my wife would improve... Sadly not the way.

Wishing you both the best

Kevin

[Yvonneandgeorge]

George when he was in hospital was a nightmare, we thought he would have to use the hoist, but once Home he got much better with transferring, I insisted that I didn’t want to use the hoist, because once they use a hoist they loose the ability to transfer on the rota stand. Hopefully once he is home things will get better. Have told the doctor I don’t want George to go into hospital, he should be treated at home. Fingers crossed things will get better once he is home. Yvonne xxxxx

[Meykat4 in reply to Yvonneandgeorge]

Thank you. I'm not sure he will be able to come home again. It's a day by day thing right now.

Kathy

[enjoysalud]

I am so sorry. I have no suggestions. My son never experienced that. I do want to say that if I had seen my son (55 years old) crying, panicking, yelling, even for an hour, it would have been VERY DIFFICULT FOR ME to see or even think about. I am so sorry this is happening to you. I Keep you in my prayers and ask that whatever is causing his brain, your husbands, to react that way, will soon pass.

Blessings, Margarita, Los Angeles, CA

[Meykat4 in reply to enjoysalud]

Thank you for your prayers.

[Nanny857]

Sorry we haven't had this severity of stiffness, it must be very distressing for you both. Just wanted to let you know I'm thinking if you both. Please keep in touch as to how things are. Nanny857x

[JCRy]

I often think that it is so easy for our bodies to define who we are, and what a misconception that is.

I remember when Ian was paralysed several years back, not through PSP, how occasionally terror would grip him.

He now realises that he is way much more than his body and is at peace.

Praying for you, Kathy, that his terrors will pass and that you both will find a place of peace in this new phase.

Hugs, Juliet

[Meykat4 in reply to JCRy]

Thank you your prayers. That my husband could accept where he is in journey.

[Spiralsparkle]

Haven't experienced to this degree and so quickly as others have suggested have you got a neurologist and also hospice involved.

They can adjust medications to make things as comfortable for him so that he isn't distressed but also isn't so sedated hopefully. If you do have hospice involvement I'd ask for them to come on board now to help him. It is distressing for him and you to see him so uncomfortable.

Will keep all crossed that a good balance can be found and he has some improvement.

[Katiebow]

Dear Kathy, it's an awful situation to witness your husband in such a state, Ben, my husband became very rigid in his last few weeks and I must admit I started to panic that I wouldn't be able to care for him at home any longer. I did manage and was very relieved that he didn't have to go into a home. He had made his wishes known that he didn't want to be hospitalised. I am still living those last few weeks out in my head on a daily basis and it still breaks my heart to think of his distress, I was relieved for him when he no longer had to endure the living hell that was called his 'life' I hope this doesn't sound too morbid or negative but it is the way things were for us.

Sending much love and support and I hope they manage to get his rigidness under control.

Kate xxx

[Cuttercat in reply to Katiebow]

I too relive those weeks.

Cuttercat

[raincitygirl]

How is he today Kathy?

Anne G.