New book released

"Where the Light Gets In" by Kimberly Williams Paisley

On Amazon

[easterncedar]

Are you recommending this? Tell us about it!  And how are you doing yourself right now?

[Hidden in reply to easterncedar]

I was just told about this book as it was just advertised on TV. When  I ordered it I see it is about PSP. I will read it and let you know how it is. Things are pretty much the same here except every time he eats he gets a runny nose and itchy eyes. This sets him off and he gets very frustrated. He still does not recognize me as his wife and we just completed six months of this thinking. I feel it is time for us to have outside help and I am looking into different options. How are things at your end?

[abirke in reply to Hidden]

Is he allergic to soemthing; Is food spicy hot; temperature hot? does he have a mild cold or congesstion?

[easterncedar in reply to Hidden]

We are coping. Not bad!  I have aides in all day while I am at work, so he is safe - no hard falls for a few weeks, thanks to their vigilance. A sister and a friend are visiting from Chicago and Niagara Falls right now and they are working busily to get some of the major chores done around the house for us. And we have stayed up too late playing word games, and talking, so I am feeling much less alone right now.  They are very dear people!!! (I fantasize about sabotaging their car.)

The VA has been astonishingly helpful. I don't know how I could have managed without them, and I  wish that everyone in the US had access to this sort of assistance. They got us some hours of an aide, which broke the ice for us, so we got used to the idea of having someone in the house, and then we were introduced to someone who was looking for work of this kind and we pay for her time.

I am grateful that his episodes of not knowing who I am and where he is have been very transitory, generally just as he is coming out of a deep sleep, only lasting half an hour or so. His personality is sweet and patient - and stubborn! I am grateful for that, too.  I think if he didn't know who I was, or if he had become aggressive, I would have been making arrangements for him to go to care.  I can't imagine how you emotionally cope with being viewed as a stranger.

I wonder if this is something like the syndrome Oliver Sacks wrote about.  Would he accept you as his wife if you were on the telephone? 

I hope you do manage to find some help soon.  Wishing you some good fortune on that front.

Best, ec

[goldcap in reply to easterncedar]

EC, I am so glad you are getting some pleasant time. And more help! I used to think how is she doing it working full time and running back and forth. Is your arm injury still bothering you?

And N, my husband also get a running nose when he eats. I just serve tissues with his meal! His eyes have always been a problem because he does not blink enough. They get red and itchy as well. I clean them with a wash and use special drops twice a day. The not recognizing must be rough. F like EC's guy does it once in awhile when he first wakes up or in the middle of the night. Once he thought I was his daughter (the awful one sorry to say) and that really irked me. Though medical people frequently think I'm  his daughter. I just say I'm older then I look and he's younger then he appears. When I ask them why they think that they say I look  and act more like a caring daughter then a wife. Have no idea what that means.

[easterncedar in reply to goldcap]

Thanks, goldcap.  the arm is a little stiff and weak, but miles better than it was pre-surgery!  

[goldcap in reply to easterncedar]

That's good!

[Christine47 in reply to Hidden]

It is about Primary Progressive Aphasia, another neurodegenerative disease.  There is a nice foreward by Michael J. Fox.  and some good resources on her website, Wherethelightgetsinbook.com .  I wish she had mentioned CurePSP as a resource.

[vsm0001]

I read something just the other day about itchy watery eyes and CBD. it was described as: because the patient can't blink as they would normally, the eye produces more tears because the ducts get clogged with gunk and dirt.  It was sucggestes that the eye be cleaned with Johnson's Baby Shampoo and warm water twice a day.

[goldcap]

VS, we use an eye wash to flush the gunk and Systene severe dry eyes formula ointment twice a day. And if the gunk gets green a RX eye antibiotic. If you keep putting ointment in them without cleaning them out they practically glue shut. I do notice he keeps his eyes closed a great deal of the time now. I often think he has fallen asleep.