My hubby is 52 and has been diagnosed with CBD...he is not aware of what happens in time , should I keep it that way? Still in shock myself

[wilma3960]

[CheekyChops1973]

Hi Wilma3960,

I have been diagnosed with cbd for nearly a year now . At least the neurologist I saw said it could well turn out to be cbd. I was told face-to-face that it was definitely a Parkinson plus syndrome after a positive datscan. I was in dreadful shock for ages like yourself and was only thirty -nine at the time !!!.

This is just my opinion - but I wouldn't tell your husband too much about it as there are some websites etc out there that can frighten you and sometimes I think its best not to know . Of course if he wants to know you could just give him little details of what might happen but I wouldn't overload him with information as I think it can have a negative affect on the illness itself .

I overloaded myself with info and its not worth it because it doesn't change anything . Everybody on this site says try and enjoy and accept everyday as it comes which is what I'm trying to do and they're right of course .

Please feel free to contact me if I can help further .

[wilma3960]

Thank you for that ..my hubby is 52 just finished 35 years in the navy and was looking forward to finding a new job and a new start..its all changed and he is struggling . Your right what I have read is scarey so No MORE READING for me I will take your advice and take everyday as it comes. Hers hoping you both remain healthy for a long while yet x

[jimandsharynp in reply to wilma3960]

Wilma, My dear wife Sharyn didn't do the reading but I did. I wanted to learn and know as much about PSP as I could. I'm no medical expert but I sure know a lot about symptoms etc. etc. due to my research. Although I did research I didn't pass information along to Sharyn and I didn't "fret" over what I read either. I'm sorry you, like many of us, got blindsided by CBD on your way to a new life and a traveling retirement together. As someone once aptly said "PSP, CBD, and MSA just take, and take, and take until there is nothing left to take". Hang tough and be strong you CAN do this thing. Jimbo

[easterncedar]

Dear Wilma3960, I am very sorry you and your husband have to deal with such a shocking turn. You have my sympathy. It's not fair. My sweetheart, three years after diagnosis, stopped me while we were walking along a lane and said that he was going to make an announcement and he didn't want to hear anything to the contrary. Then he said, "I'm going to get over psp. I'm going to get better." So that's what we go by. I try not to tell him too much, except to say, when he's going through something, that that is indeed a symptom of psp and not unexpected. We do not talk at all about dire outcomes. It makes planning very hard, but of course any of us could die at any moment, so why should he especially have to focus on his mortality? I try very hard to slow down and appreciate the good moments. I also am getting him into a physical therapy program to help him with his strength and balance - fighting all the way down, perhaps, but it allows us to imagine there can be improvement. I love this site. It helps me no end - a good place to get good advice and to vent safely. Best wishes to you and your husband, Easterncedar

[Heady in reply to easterncedar]

Hi Easterncedar, you mention getting your husband into a physical therapy programme, what is that? Have you heard of the Arnie approach? Just got S signed up for that. Designed for stroke victims, but the girl who is the trainer, says it will work for anyone. Basically, getting the brain to try and find other pathways to get the body to work. Can't do any harm, must do some good, if only that he feels he is doing something to fight this blasted disease!

Lots of love

Heady

[Hidden]

My heart does go out to you. My dear wife aged 56 has rapidly progressing PSP. Mobility almost 0 now, multiple infections, 6 pneumonias in past 15 months. Lots of other nasty things. Cognition has dropped, but we can still discuss things in depth on a good day. But often she doesnt really understand all that is going on. For example a social worker sat with her on the ward for an hour and she has no recall of ever having met this lady or what was discussed and agreed. Having read messages on this site. Most come from the carers, and ofter report the gruesome detials of these awfull illnesses. For our part weve got to the stage where there is little point in discussing in depth what is going to happen, just focus on the day and make it as good as possible. Best wishes

[jimandsharynp]

Wilma, Here's how my dear wife Sharyn and I handled the situation. After diagnosis we reviewed the symptoms and the prognosis (death). I strongly kept repeating during the conversation "It doesn't mean you will have all symptoms" and "There are no guarantees of length of life FOR ANYONE". After that discussion we NEVER again discussed "How long will I live?" or "What symptom is coming next?". We just didn't go there. Once we understood initially everything there was no reason to go over it again. On one occasion she said "My speech is getting worse" and I just replied "It's part of PSP, remember?" and she said "Yes". Here's what we did that worked well for us both. We never discussed the "stage" she was in. We never discussed what symptom is coming. We never discussed how long she might live. We didn't discuss them over and over because they are things we couldn't control. PSP was in control and doing whatever it liked. We spent our time on loving each other making the best of each day and not looking ahead. It's often said "Live one day at a time" and that's what we did and boy did it ever work for us. Without the anguish, fear, and other garbage we enjoyed the life we had together, one day at a time. Perhaps everyone can't do that but give it a try. Certainly I'd have one serious discussion about the POSSIBLE symptoms you both might encounter and POSSIBLE length of life and then don't go there again. Good luck! Jimbo

[SharonAB]

Dear Wilma,

My views are a little different to most I think. In our situation I think it would have been more preferable for both my husband and I to have been informed, discussed and recorded in great detail of what could be - even with the mental anguish it would have caused.The purpose would have been to document a parenting plan to include my husbands values & expectations for the future of his daughter. For now 'mid way' through the PSP nightmare there have been changes to government legislation, interpretations of law, involvement of extended family, other third parties we never thought at the time could be or knew would want to be involved. As a result there are a very large number of hurdles in place which are affecting the paths selected in looking after our daughters health, education requirements, religious following, counseling support services, family contact...

All things I thought were down to the roles and responsibilities of parents to make, however am finding it so much more when when one party is deemed by the laws of our land to be "of diminished life expectancy and has the inability to derive a future income." Terminology that I had not thought of, or for that matter heard until recently.

Regards,

Alana - Western Australia

[Sawa]

Hi Wilma,

Like everyone else here, I'm glad to meet you but sorry for the reason. My husband has PSP, diagnosed in 2011. Like Jim, I have done loads of reading and research. No, it doesn't change anything but at least I am forewarned and, so far, have been able to make any adjustments necessary to accommodate my husband's changing needs.

That being said, I have never spoken to my husband in depth about the prognosis for this horrible disease. I've warned him about the obvious things (falls, choking) so he can be careful. We also had a gentle conversation about whether or not he wants a feeding tube one day (I stressed he may not need one but that we should discuss it). He has made his decision on that point and we both feel better having that decision made. We've also had a small chat about burial arrangements for both of us.

Whether or not you choose to talk about the prognosis in depth is a very personal decision and there's certainly no right or wrong. But I would suggest that you discuss some of the tougher eventualities to get clarity on his wishes (I framed it as important we both talk about our wishes in case something happens to either of us). And then just focus on one day at the time. Bear with the bad days and make the most of the good days. And be gentle with each other and yourself.

[wilma3960]

To everyone who has written to me I would like to say thank you so much for the helpful advice and for the time you have taken to write to me. Right now it is hard to comprehend what is happening with Jim , as I am sure it was for all of you , however knowing I can come on here and talk as well as learn makes the task ahead seem just a little less daunting .xxx