What a great bunch you are

[DE4EE]

I only posted yesterday for the first time and your response has lifted my spirits no end. Thanks to; raincitygirl, hilsandR, dadshelper, willow_rob, AJK2001 & katiebow.

Why is it that the professionals with whom we have been dealing with for over Nine years have never given us all this advise. We had our first interview with the Parkinson's Nurse just two days ago and although outpatient care from a hospice was mentioned and is being looked into there was no mention of CHC.

Why don't we get given things like Guide to CBD and the booklet living with CBD by our doctors or specialists when they diagnose this dreadful illness.

Thanks to this site I now feel that I can discus my fears, thoughts and worries with people who understand what I am going through, rather than to family and friends who have no idea what it is like when they only see us occasionally and think that nursing a partner with CBD is easy because they don't see behind the scenes.

Our partners who suffer loss of dignity, independence and participation in life, who come to feel that they are a burden on there family with no hope of recovery or treatment CBD is sole destroying. It takes away your wife/husband, friend and lover and leaves you with someone you love to care for.

[Dadshelper]

The collective years of trial and error learning are incredible on the site. Just keep in mind any Dx your wife gets now is the doctor's best educated "guess" based off their exposure to these diseases. For a 100% certain Dx a brain autopsy is required.

Ron

[HilsandR]

Glad you now know you are not alone De4ee. Hilsx

[Willow_rob]

Well done for joining us. Remember you will build up a wealth of experience which you can pass on to others. Hugs. Rob

[Heady]

This site and our local support group, was the ONLY place I got any practical advise or support. There was the rare person who knew about PSP, but they hadn't a clue what it was really like.

As Rob as said, it's up to us all to pass on the knowledge given to us by others or learnt the hard painful way.

The main thing I want to pass on is, get as much help as you possibly can. Regardless what your inner thoughts are telling you. Also respite is essential, in any form. Most of all, be positive, you are doing your best in a extremely hard (!!!) situation. Both parties suffer with PSP, one has the symptoms, the other has to deal with them.

The biggest thing is DITCH THE GUILT!!!

Sending big hug and much love

Lots of love

Anne

[DE4EE in reply to Heady]

Thanks for your support and thoughts, It is hard to allow others in especially friends and even family. I think of her dignity when she needs to go to the toilet or when she is eating and needs help, I have just given her a magnum ice cream, imagine a four year old child with a chocolate bar. I could not expose her to the humiliation of that in front of her family, she is fully aware and understands what is going on but no matter what I say they will talk about her as if she is not there, worse still is the way in which they talk to her like talking to a child.

[Heady]

I remember once, I got Steve's 11yr old grandson to feed him, much to the distress of his father. He loved it, so did Steve. A was playing, " here comes the train", all silly things like you would to a toddler. The laughter that was coming from both of them was wonderful.

I know it's demeaning when people talk to your loved one, like a child, but at least they are talking to them. Lots ran away from Steve, that hurt him a lot more than the way he was spoken to.

There is a very fine line, between patronising and giving pleasure. The one thing Steve loved above all else, was when people teased him. No matter what they said, it made him feel normal. So yes, let your wife eat an ice cream in front of people, as long as they take the "Michael" and not pity her, it will be fine!

Sending big hug and much love

Lots of love

Anne