Confused

[Marion1946]

My husband has just been diagnoses with PSP. How do I approach him about this diagnosis that is going to affect both if us?

[peterjones]

hi marion hows it going mate well I would be perfectly honest with your husband and find out as much as you can about psp discuss what you will do if and when the need arrives but get him to make out a will and power of attorney and a health directive if he has not done so already I know this all sounds a bit drastic seeing as he has just been diagnosed but this is a very disturbing disease and you will need all the strength and patience you can get I have psp

myself I think its the slow type or I hope it is mate but with this psp you never really know which way its going to go from what I can gather it seems that everybody has had the same symptoms happen to them but at different times\\\\ I would not worry about what stage he is in just enjoy every day im sorry to be so gloomy with this but it is a gloomy disease and as I said you will need a hell of a lot of patience if you are going to be hes main carer try and get things in place early it will save you a lot of time and effort later on AND LASTLY I WOULD STAY ON THIS SITE BECAUSE THERE ARE A LOT OF CARING AND GOOD PEOPLE ON HERE AND YOU CAN HAVE YOUR MOANS AND GROANS AND LET OFF STEAM WIITHOUT WORRYING ANYBODY THIS SHOULD HAVE BEEN FIRST IM VERY SORRY THAT YOUR HUSBAND HAS GOT THIS PSP TELL HIM NOT NOT TO WORRY WHICH I KNOW IS PRETTY NEAR IMPOSSIBLE JUST ENJOY YOUR DAYS TOGETHER YOU WILL GET MORE INFORMATION

IM SURE AS PEOPLE ON HERE SEE YOUR POST GOOD LUCK AND TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[Marion1946 in reply to peterjones]

Thank you Peter for your response. My husband was diagnosed a little more than a month ago. We just got home from the hospital. He was admitted to the hospital for a plaque build up in his left leg. The cardiologist could not do the procedure so they called in a surgeon and the bi passed the clogged vein with an artificial one. We are home and will be going tomorrow to see the cardiologist to check his right leg for a similar situation. I let the cardiologist know my husband's diagnosis from the neurologist. I told him my husband would kill me if he knew I was sharing this info with him but, I feel the medical treatment my husband will be receiving will run smoother if they have any and all diagnosis. I am so sorry that you have been diagnosed with this horrible diagnosis but what a comfort to talk to a real person that can give me some guidance.

[LynnO in reply to Marion1946]

Hi Marion,

The neurologist thinks that my husband might have a combination of both PSP and CBD, at least at the last visit that's what he thought. We've gotten somewhat of a diagnoses about a year and a half ago, but problems started about 5 years ago. He didn't want anyone to know at first either. He thought he was doing a good job hiding his symptoms. I finally convinced him that you could definitely tell something was wrong, and it was better to share what was going on, than to have people/family guess at it. It was hard at first, but he's used to it know. I let his eye doc., dentist, and anyone else who comes in contact with him know what is going on. It seems to be better for all. He didn't want to be treated differently, and his pride were probably the main factors of not wanting anyone to know. I do have to remind some of our friends that he needs and wants to do things on his own, but if we need help, I'm certainly not afraid to ask. He's getting used to that too.

In the beginning I knew absolutely nothing about either disease, I've read everything I can possibly get my hands on about these diseases, and now I know more than I want to. I share things gradually with my husband. He knows he will die because of this, but it's really to painful for us to discuss that right now. We just handle each day and work on the progressing symptoms. Only you will know how much information your husband will be able to handle at one time. I would learn as much as you can so when he's ready to know more, you'll be ready to be able to share what you've learned. I'm sorry that you have joined us on this frightening and terrible journey. I have found strength in myself that I never thought I had, and I'm needing to dig deeper and find more! Stay on this site, if nothing else but to read, it makes you feel less alone.

One day at a time!

Lynn

[peterjones in reply to Marion1946]

HI MARION 1946 I THINK YOU WERE VERY WISE TO SHARE INFORMAYTION AS SOMETIMES THE ANESTHECTIC DOES NOT AGREE WITH ALL PSP SUFFERES JUDGING BY WHAT I HAVE READ ON THIS SITE MATE \\\ HOPE YOUR HUSBAND IS NOT TO BAD AT PRESENT MATE I WISH YOU ALL THE BEST TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[Hidden]

In my wifes case, she had a diagnosis of parkinsons 25-3y ago, but things moved too quickly with 6 pneumonias over the next 18 months, 20+UTIS and walking went from OK to 0 in about 9 months. We pushed and pushed. I had big arguments with GPs and eventually we saw a neurologist who took about 40 mins to diagnose PSP. My wife basically collapsed, she has just had her 57 birthday, and then went into hospital for a short period in may just before her birthday in July. Since then (MAy) weve had yet another pneumonia, but now as Pete says take each day as it is. We dont know if there is 3 days or 3years left. Each day really is precious. So in our case we know my wifes speech isnt affected yet, so we must record her as much as possible, ie take the positives when they are there. In the end its probably best to get the diagnosis out into the open so that all your loved ones know andthey can begin to think about the future. You will need a lot of support yourself, try to ensure you have regular community REHAB visits, try to get a community matron. All these folk should also try to support you as well as the patient. Get all the social services assessments so you get help in the house. You wont be able to do this yourself.

As pete says keep on the site, you will learn from others, amd also see the wide variation with which this illness presents.

God bless, keep going

jmbb

[Marion1946]

Thank you jmbb for your response. I appreciate any and all information, comments and experiences you and your wife are going through. My husband has a college education, I do not. I owned and operated my own florist shop for 13 years. I have had two total knee replacements in the last three years. My husband and I were both very involved in my diagnosis and pro active with my treatment. I am curious as to why you tell me to find out about this DISEASE and then share it with my husband. Is it because they are in denial of what they have been diagnosed? Did your wife not do any research on her own. Please let me know. My husband is in complete denial. He has told me he doesn't want to discuss anything concerning this diagnosis. I know he must be so scared, confused, mad that this has happened to him. I also feel we have got to approach this matter and stop ignoring the WHITE ELEPHANT that now lives with us. Please respond.

[mthteach in reply to Marion1946]

My husband has known he has PSP for 10 months. We also think he has had it for up to 3/5 years before the doctors told us. He is in denial also. We have done the will and power of attorney, and gone to the funeral home and picked out both our caskets and plots. I research on the computer all the time about the disease, but he has not even looked it up on the web. He was always the computer geek in the family. I have tried to approach him about the time we have left together. He just said "I hope that we have a long time to go before we need to discuss anything." I just try and take one day at a time, and make sure he is comfortable. So far, only his speech, gait, and some problems drooling have been affected. I feel he will come around when he is ready. He is a very smart man.

[Hidden]

Dear Marion

How I feel for you. My husband Doug was diagnosed 5 years ago and we had much the same situation.

It was and continued to be the elephant in the room as all he would say was he was going to beat this awful thing so would not talk about the future and it's ramifications.

The only thing we did get from him was he didn't want peg feeding.

I didn't feel I could push him on his attitude as it was his way of coping with the fact that his life was ruined.

I don't have a solution for you but my heart bleeds for you both.

My husband is at the end of his life and not expected to last the week and I'm so glad it will be the end of his suffering.

We were ( lucky) to obtain C H C funding and I would urge you to fight tooth and nail for it when the time comes,for your own sanity and health.

They will tell you oh no it's just for end of life but no it's called continuios health care not end of life care.

We actually have a 24 hour package which is hard on one hand cos you have strangers in your house 24-7 but it means you can keep your husband at home with you right through if that's what you want.

I wish you well and please if I can help you in any way just ask

All love Joey

[Marion1946 in reply to Hidden]

Sorry I have never heard of CHC funding. Could you enlighten me. When should I start asking for this service. What about Social Security or any other service. Thank you so much for any and all information. I have been considering journaling to keep stats and comparisons.

[easterncedar]

Dear Marion, my sympathies. This is a difficult time for you and your husband. The initial shock of the diagnosis is bad for everyone; it's hard to get through, but you do. You will get your feet under you and learn what you need to. After more than three years of this I can say that this is not the worst thing that could happen. (It's not Alzheimer's, bone cancer, fatal heart attack.) We have lots of good days and good times, although the struggle to maintain the status quo is ever present. My guy is in as much denial about the inevitability of his decline as he can be, but that gives him motivation to fight, so I don't push it. We did just start the LSVT Big program of physical therapy, and I wish we had started it sooner. I think it is helping with his balance already. My only real advice is to keep moving, and don't lose heart. Enjoy the good moments. Hang in there, and use this site. We are all in this together. Easterncedar

[Marion1946 in reply to easterncedar]

I am nor familiar with LSVT Big program. Could you enlighten me please.

[easterncedar in reply to Marion1946]

If you look it up on the internet, you'll find it. There are good videos. It's a pretty common program of therapy and is found all over the world, although we have to travel some distance from our small town to the city where the rehabilitation hospital offers the therapy. LSVT stands for Lee Silverman Voice Therapy; it was originally designed to deal with the difficulties people with Parkinson's have in communicating. That part is now called LSVT Loud, and the movement therapy is LSVT Big. It is aimed at retraining the patient's brain to counteract the development of tentative motion, which makes the person more unsteady and susceptible to falling. Exercise of any kind is really helpful. If I could have gotten my guy into tai chi, I would have done that, too, for the way it helps with balance. The falling is terrifying and dangerous, so anything you can do to maintain balance is to the good. There is no cure for psp, nor any reliable medication, but if you are lucky your husband will have the slow kind, and you'll have good years together yet. All the best, Easterncedar

[Marion1946 in reply to easterncedar]

Thank you so much I am headed it the internet now.

[Hidden]

I went on a walk yesterday - not my usual distance of 2.5 mi. or more, but 1.8 miles. Found going up hill at the midpoint very hard, Balance became a real issue, Finally about 1/4 mi. from home, a neighbor asked if I need a ride. I did and took it happily. Physical therapy would help with balance? I am in a hydro therapy class 2-3 times per week.

[Marion1946 in reply to Hidden]

Thanks for your suggestion. My husband just had an artery bi pass on his left left due to too much plaque build up. Maybe after he recuperates this might be helpful.