Hi just looking for some advise my mum was diagnosed with psp

[Jolove]

Mum was diagnosed with psp 2 years ago but we believe she has had it for at least 4 before being correctly diagnosed, the last 2 months her moods are terrible, she turned nasty at the drop of a hat and says nasty things, is this all part of the psp, she is no longer able to walk un aided, and has horrible spasums in her sleep, she doesn't really Say much anymore, but we are really struggling with the nastiness, she was on madipar but this had no effect so the neurologist took her off it

[easterncedar]

Hi, Jolove. Many people here have struggled with their loved ones developing bad temperament, sorry to say. Antidepressant or anti anxiety meds may help but will require time to sort, as positive effects may take 6 weeks to take hold. I hope someone else may chime in with better advice for you. All I can really say for sure is that this, like everything with psp, or with life in general, for that matter, will pass. Meanwhile, welcome, love and peace, Easterncedar

[Jolove in reply to easterncedar]

She is been on duloxatine for many months now so perhaps it's time for a change it's heartbreaking to see this illness take over such a caring and warmhearted lady as my mum, she seems to take the majority of her anger out on my dad who is her full time carer I do 3/4 days a week, she can no longer walk unaided and be left alone it's seems from the minute she had her diagnoses she gave up,

[easterncedar in reply to Jolove]

I learned from experience with a family member years ago that depression often presents as anger, rather than sadness. With such a diagnosis, and your mother " giving up", well, maybe it's worth trying to find an antidepressant. Or maybe counseling? My guy had a couple of good talks with the psychologist that he said helped.

[41273416a in reply to easterncedar]

Dear EC,

You are always the voice of reason! I am on the other side of the coin, being that I have PSP. I get so mad at my family, especially my husband, and find myself acting and using despicable words in very angry tones. I am taking a mild antidepressant but no matter how you put it....I am just rude and mean. I blame this disease but I need to find a way to be nicer! I love reading your comments to others. Thank you. Love, Mary B

[easterncedar in reply to 41273416a]

Thanks, Mary B. I appreciate your kind words. But here I am, lying awake because I lost my temper with my guy tonight and am feeling very sad and ashamed about it. No excuse for me, he's patient and sweet, although stubborn! I don't know what I can do about my snappishness, but I need to find a way to be nicer, as well. Love back to you, ec

[Heady in reply to easterncedar]

Common on EC, you know full well, we suffer along with our loved ones, with this damn disease. We all walk this tight role of PSP life and the slightest thing can throw us, hence the bad temper and the snapping. A stubborn man, no matter how sweet and loving, as always tried the patience of a woman, with or without PSP.

I am one of the world's worst at this, as S will testify. Back seeing a therapist at the hospice. He has told me that my anger is perfectly justified and has given me some coping mechanisms. Blowing air out, at the same force you breath in when angry. Stroking my arms or cuddling works as well. Basically the opposite you do when angry. Also remember the 3R's , RETREAT, REFLECT, REACT! Instead of the 4R's REACT, RETREAT, REFLECT, REGRET!!! This may seem like bull###t, but it does work, well it does for me, if my temper doesn't get in the way first. Which is 99% of the time, even that 1% is better than it was, though.

Lots of love

Heady

[easterncedar in reply to Heady]

Thanks, Heady. Good advice as ever, and I appreciate the foxhole camaraderie! I liked those Rs when you mentioned them before, and have profited by your example. I do often try to retreat, even though this has led to a fall or two, since a lot of my frustration arises when he seems to be fighting a transfer, won't let go of support, won't sit. Or when he is insisting on getting up to go who knows where and I can't convince him of the danger. I need to remember the breathing. I'm thinking of asking my friend, a hypnotherapist, if she can't help with this, imbed the calming suggestions, or something!

Thanks again. It helps more than I can say...but you know that! Love and hugs, ec

[Heady in reply to easterncedar]

I often have to retreat, when trying to transfer S, as well. I want to just let go and run, when he is pushing me away. Instead just clear off for five seconds into never, never land in my head, it doesn't stop me yelling, but it does keep me in control and therefore not "quite" the mad woman from Borneo. Or UK, in my case!

I do know exactly how these posts help us all, you are right, not even Shakespeare could put it into words.

Lots of love

Heady

[DenB in reply to Heady]

Dear Heady,

It is so hard not to be angry at times. I usually have so much patience but there are times, and more so lately, as my husband screams and shouts quite a lot, I get angry, and the first thing I do when I feel this awful anger that springs out of me, is retreat!

I take myself out of the room, going out into the cold air in the garden helps because it is such a different environment and I am on my own!

I hear birds and feel the chill on my face and Reflect a bit.To me it's like magic. It calms me and and restores my patience !

I know it sounds a bit dappy but it works for me!

Denise x

[Marie_14 in reply to easterncedar]

EC

I feel so sad for you as I did that yesterday to my hubby. Have been so upset ever since. You feel like you are the worst person in the world. You are not though. You are so kind to your husband. It gets to us all at times I suppose?

Marie x

[easterncedar in reply to Marie_14]

Thanks, Marie. Yes, all we can do is shake it off and resolve to do better. I'm not giving up. I'm sure I can improve....heaven knows there's plenty of room for it! Love, ec

[Marie_14 in reply to easterncedar]

Ec

Wish I could give you a big hug. You are so good to your husband. Wish I could do half of the things you manage. So tell him you love him and you are sorry. He loves you too. How could he not?

Marie x

[Heady in reply to Marie_14]

Come on, being kind to your husband 100% of the time, wasn't in the contract. Love and honour, yes, even obey, if you didn't ask for that to be taken out. But KIND, never!!!!

We do try, of course. As long as you are a fair percentage of the time, in my book, that's perfectly acceptable. S starts to get really worried, if I go above 50%!!!

Lots of love

Heady

[pzagy]

hi Jolove

I try to put myself in their shoes, with the monster of a disease ravaging their body. It is quite scary and overwhelming. Easterncedar alwas has great input, if her neurologist took her off one med, demand they look into another. The mental torment is not something you should take lightly. Everyone takes to medication differently, what works for one may not work for another.

Welcome to our group

[abirke]

My husband never got a nasty attitude. He instantly went into apathy mode, with a bout of perseveration.......where patient focuses heavily on an idea or activity...wore me out....He then would laugh uncontrollably or more it was cry ...but these behaviors were rather temporary in the context of PSP. I think ec has it right that your mum will move on. I think that Counselling is good not only for your mother but your father as well.....It is draining on him and he may also get angry or overly sad or as with most of us, just dang exhausted. Dont' feel too shy to get some emotional help yourself...even just talking about it....venting as it were can be a real cleanser.

As this is your 1st post I will sadly welcome you and leave you with another way to keep strong as PSP makes deeper cuts into your life; God's help and comfort. We often overlook our spiritual needs but this has to be exercised and paid attention to just as mucha s the physical and the emotional parts....If you are a praying person, then do it . Daily not just when you can get round to it but set a time...I like the morning....to talk to God....that's not to say you can't at other times just it's a you and Him time! Seek out His comfort I go to His Word for support....I still vent and whine at you guys but on this site; I know God is there for me. So I will leave you with some scripture of hope and strength....and again welcome....

Oh and let dad know about this site he may need us too!

AVB

Why are you cast down, O my soul? And why are you disquieted within me? Hope in God: for I shall yet praise Him, who is the health of my countenance, and my God......Psalm 43:5

The Lord is my rock, and my fortress and my deliverer; my God, my strength; in whom I will trust; my buckler, the horn of my salvation, and my high tower. Psalm 18:2

I can do all things through Christ who strengtheneth me.... Philippians 4:13

[Katiebow]

My husband was diagnosed 2 yrs ago but had symptoms way before that. He hasn't had any angry outbursts and has become much more passive and compliment which wasn't really his style, fortunately for me it makes dealing with his needs much easier, it must be awful for you and your dad to deal with your mums tantrums. Fingers crossed she will soon get through this stage and make it easier for you to help her. Such a horrid disease.

Love Kate xxx

[am2015]

My mum went through this as well, I think it is the frustration of having this awful illness. To slowly lose all control over your body must be so overwhelming. It is hard being on the other side and bearing the brunt, words can be really hurtful. Just try and remember that it is not really her. Unfortunately, you will come to a stage when you will actually miss hearing her voice as speech diminishes. My mum is fast losing her ability to talk. Hang in there and keep on telling yourself and your dad that it isn't the person you love and care for, it's PSP.

[Duffers]

Jolove welcome to this site. So sorry to hear of your mums unusual behaviour. My hubby has that silly laugh but i think that is the lesser of all the different odd things they can do. Its part of PSP but your gp should help you sort it out. Its too distressing to leave it the way it is, for all of you. All the best. Marie