Thank you all.

[41273416a]

Thank you to all who replied to my messages. Unfortunately, some days, or should I say most days my vision is "so off" making it so difficult to type or accurately read anything. Please don't think I am ignoring you by not responding. I sure dislike this disease. I get the feeling most responding are care givers or family members, rather than those with PSP. You all seem to have great suggestions, and I thank you. Love, Mary B.

[easterncedar]

Please don't worry, Mary B, about folks not understanding. It's true, most of us are caregivers, many caring for loved ones who don't or can't communicate well, which is one of the reasons we are especially grateful to those, like you, who can and do make the big effort to share your experience. One way or another, we are all in this together, and we all want to help each other. Hang on. Love, Easterncedar

[NannaB]

Hi Mary, I echo what Easterncedar has said. I somehow missed your first post but have just read it. My husband never liked using a computer so communication has been difficult so I, like others, really appreciate the effort you make under difficult circumstances to voice your thoughts. It reminds me that the man I married is still the same man inside, however he appears to others.

Thank you for making the effort but don't feel guilty at not responding. I know it must be difficult and hope your vision doesn't deteriorate quickly and you'll be able to post for a long time to come. Your typing is amazing.

Love Nanna B.

X

[myjual7]

So glad to hear from you

[Heady]

Hi Mary, I am a Carer for my husband who has this evil, evil disease! We all hate it, with a passion. Never, ever feel guilty about any thing you write or don't write. We all know where you are coming from. My husband can't communicate hardly at all any more, certainly couldn't use this site. So we all really appreciate, yours and the other sufferers that are able to, input and insight. As a Carer, we all too often get bogged down with the day to day caring of our loved ones and the frustrations that go with it. To be able to get a view from the "other side" so to speak, really helps. Not only to understand, but to remind us that there is still the person we love, behind this horrible illness.

I hope you are able to join in as much as you would like to, for as long as is possible! As Easterncedar has said, we are all in this together and all need the support that this wonderful site gives us.

Lots of love

Heady

[Robbo1]

Mary B. don't worry about spelling or anything , just get your meaning through. It is a great help to someone like me, who is a carer, to hear the other side of the story. I can only guess half the time, what my husband is going through, so thoughts like yours are so very useful to me and I am sure, to other carers. Love. and best wishes. X

[abirke]

I believe I have said this before. That if you can write a daily or weekly diary on this site....you don't have to spell or have good grammar just spill your feelings. I wonder what it must be like on the inside....I know what it is like on the outside......if and when you want share with us physical feelings do your eyes hurt, are you hypersensitive to light what happens when your eyes see bright light. when you fall seemingly for no reason do you feels all of a sudden dizzy or loss of muscles ? What is it you would like to do. You might have all sorts of therapies, but what do you want to do, drive up the country, take dance lessons ....I don't know....sing!!!???

I know my post is jsut the opposite of this post...Forgive ME of my curiosity And you never ever have to apologize....if all you want to write is a stream of consciousness then go for it! If you don't want to write for another month Go for it.....no we'll miss you!

May I suggest however, if your computer is getting difficult to use, that you find a better computer. Agencies who care for the disabled may have suggestions or better computers with bigger letters or a tablet that has common word keys like 'the' 'and', 'they' and other common parts of speech.....that are pre typed.....Sounds like something I need as I click spell check for the 50th time!

Well Numbers, that's all I have to say...don't feel bad for not writing; don't feel bad for spelling or grammar; don't feel bad for writing what you feel...(I don't think swear words are aloud...but we all are feelin' them! ) Just write when you want, what you want, how you want......

Sounds like this is a mission for Jillann and Peterjones, And Shasha...

hahahahha

AVB