MY MOTHER..

[happyGirlRobin]

My mother has had PSP ..I live over an hour away and take care of father I try and talk to her on phone its become impossible I'm seeing a lot of communication here with people PSP..i so want to get her to speak more so glad I found this sight.

[easterncedar]

So sorry for you and your mother. It's very hard to deal with. I find the lack of communication very alienating. We have had good response with the LSVT Big and Loud programs. They were developed to deal with Parkinson's, but they have helped a lot, however temporarily. I hate to think where we'd be now if we hadn't had the speech therapist involved. Can you get your mother to a speech therapist?

[Kevin_1]

Hi HGR

PSP is horrid. I'm sorry you have to cope with it.

Worrying about you... Your profile doesn't say which country you live in.

Is it possible to get practical assistance where you are?

I struggled for quite a while before I got caring more worked out and got the assistance in that I needed.

There can be no care without a carer who is not exhausted.

Look after yourself... that matters.

Well... I've found the warmth and advice here invaluable.

Hope it works for you too.

Warmly

Kevin

[GilliW]

Don't be too upset if she can't talk to you. You talk to her. She is still ther and will get great comfort from listening to you. Save up all your news and just talk. If you can FaceTime OT Skype. She will be able to see you and you can blow her kisses

When the patient has trouble talking. I found asking questions that only require a thumbs up or down. It's a little frustrating. Laughter is still the best medicine. Hang in there and just love her

[NannaB]

My husband stopped talking on the phone a long time before he stopped talking altogether. When his speech became slower as he tried to find the correct words to say in his mind, if he was looking at someone and they could see he was having difficulty, he was more relaxed. The phoned freaked him out. He couldn't see who he was speaking to even if he knew them, our sons for instance, and his confidence hit rock bottom. When he rarely spoke to me I asked him why he didn't answer me and he replied, "I did in my head". He couldn't get the words out that he was thinking. Now, our sons talk to him on the phone but don't ask him questions. They tell him what they have been doing, what our grandsons have been up to etc but don't expect a conversation. That happens face to face when they can get here and my husband contributes to the conversation by moving his thumb. Your mum will probably be more comfortable face to face so if your dad encourages her, hopefully she will keep her speech for some time. C had speech therapy exercises which may have delayed speech loss but unfortunately with PSP, if the person living with it continues to live for a good few years, their speech is very likely to go altogether.

It's good your parents have you to support them. Continue to phone when you can't get to them, speak to your mum without expecting too much conversation but let your dad say what he wants and talk to him. It can be very lonely living with someone who you can't have a decent conversation with.

Best wishes.

X

[vlh4444]

My husband pretty much gave up with the phone at quite an early stage. It used to make him very agitated and bad tempered trying to talk to people as he couldn't find the words quickly enough. Now when our children and other members of the family ring I usually put the phone in speaker mode so that he can listen to my conversation with them. That way he is hearing the news first hand but doesn't feel he has to reply. At the end they speak to him directly and he is able to make a sound for goodbye.

It is frustrating though for your Mum and for you. Is she able to speak to you well when you see her face to face? Do see if you can get referred to a SALT (speech and language therapist) if you haven't already. It may keep your mother communicating for longer.

Vicki

[abirke in reply to vlh4444]

That's exactly what Bruce and I do. It works great. Dad just listens as his mom brother or kids talk to me and him. He really does enjoy it and I know his family enjoys it otherwise they wouldn't be able to talk "to him"

AVB

[myjual7]

Have you tried Skype ? I have PSP so find talking difficult but manage to Skype my daughter every week so I can see her as well. She lives in North Devon I in Liverpool

[steph02]

I find it very difficult to speak . and did not find the therapy very helpful I find it very strange because i know what i want to say but sometimes it just won't come out I find that I can usually read out loud with no difficulty or hesitation. so if I type out what I want to say then it is easier. perhaps you could try this trick on your mother.

[kryste]

Learn sign language and if not at least make up your own sign for thing she might try to tell you it will make things much easier like when my aunt has to go to the bathroom she will make a circle with one hand and then stick a finger from the other hand in the circle and I know right away she has to poop. Sorry if this groses you out just a suggestion.

hugs kryste

[abirke]

I agree with

easterncedar. A physical therapist may be a good help for your mom to become more articulate. Also, your mom may do well with the internet. My husband is able to point to letters that make up his sentence, now just a word. But if she still is able to use a keyboard, or a tablet , she may be better able to communicate by spelling it than saying it !

Good Luck

AVB

[Cwolpe]

Hi Robin . My name.is Christy and I too am new on here. Are you in the state'