Confused

[Marion1946]

It's 3am in Humble, Texas and I can't sleep. Mike my wonderful husband, was diagnosed on June 27, 2014 . He has had two surgical procedures this summer on both legs and groins for clogged arteries. We have an appointment with a second neurologist this morning in Houston. I discovered this network shortly after Mike's PSP diagnosis. I find comfort knowing there is somewhere I can go to get REAL facts from patients and caregivers. I have so many mixed emotions about today's appointment. I tell myself not to worry but I do worry all the time.

[NannaB]

Hi Marion, I hope by now you have fallen asleep so you are awake enough to take in what the neurologist says later today. If you are a natural worrier it's hard not to but I have trained myself not to worry about anything I have absolutely no control over. I put all my efforts into making every day as good as I can for my husband. I have an idea of what the future holds for my husband but no one really knows how things will pan out for any of us so why worry about the future, it just ruins today. Unlike partners who lose their loved ones through stroke, heart attacks, accidents etc, we do have time to get our affairs in order, sort finances, renew friendships, tell them we love them. If your husband can still speak, ask him things you don't know how to do, it's amazing what you can do when you have to.

You already know the neurologist is probably not going to give you any good news. We both shed tears speaking to the neurologist at the beginning but I don't lose sleep worrying now. I pray for peace, put on a chat station on the radio, set to go off in 30 minutes and I never hear it turn off.

I used to worry about everything and went grey when our three boys were teenagers and driving so I know folk can change and become more relaxed in any situation....I did.

Keep well and take care of yourself .

Very best wishes.

Nanna B

[Marion1946 in reply to NannaB]

Thank you Nanna B. So far the only signs do PSP for Mike is his vision, (six months) falls, (six months). I have done enough research so I pretty well know what the future holds for both of us. The first Neurologist was pretty vague about the diagnosis. Maybe by just giving us the diagnosis was all he thought we could handle. It was his recommendation that we see the second Neurologist. This Neurologist is an associate of the first Neurologist although this doctor does do research on PSP. Yes, you are right about worrying and I know I should put all my efforts in just taking care of Mike and myself but, the worrying just seems to creep up around every corner of my waking hours and interrupts a lot of my sleeping. Your comments are so appreciated.

Janice

[Frosty]

We saw several neurologist . The only one that really knew what was wrong, was a movement disorder specialist , also neurologist . My husband started showing signs in 2007. Diagnose in 2010. This is a wicked disease . Take care of yourself. Your going to need all the help you can get.

[Heady]

Hi Marion,

We can all relate to what you are going through right now. It is very frightening thinking about what the future to going to bring. Instead, try thinking, I DO know what the future holds! Nobody knows the future, but at least we have some idea. Not pleasant, but we KNOW! Therefore we can plan, get organised, prepare ourselves and our families. Find out what help is out there NOW, not when it's actually needed, so you have a choice, or at least know where to go in a emergency!

Get some physio going, it helps to keep everything moving. Get the speech therapist in, and start with exercises for the voice, to keep it strong. One thing we do regularly, is practise getting up from falls, in various different places. My husband can get up in these exercises, but hasn't a clue, when he has fallen! So, it's great for me, I can learn how to get him up, great for him, so he knows he CAN get up on his own. Also, it's good to keep a running assessment of his capablities for getting up and all in a controlled, calm environment, with no worries about injuries!!!

One thing we all believe here, is "one day at a time"! It is the hardest thing to do, but valuable the days you achieve it! Today's problems are hard enough to deal with, there is no room to worry about tomorrow's as well!!!

PSP is a very evil disease, taking our loved ones away from us slowly in such a cruel way. My feeling is "it ain't going to have it all it's own way" I am going to fight all the way, I will leave no stone unturned to make S's life the best I can. I know PSP will win, but it will have a few black eyes and bloody noses before hand!!!

So, take each day as it comes, be positive, try and keep life as normal as you can, for your sake as well as your husband's. Most important - STAY ON THIS SITE, it's needed for days for the days all the above fails. We are all carers and PSP sufferers, so will know everything you are going through, we can give advice and just be that great big shoulder you need to cry on. We all need each other, today, we are all trying to get you through it, tomorrow, I will need you, when I hit that brick wall somebody keeps putting in front of me!!!

Lots of love

Heady

[Marion1946 in reply to Heady]

Thank you Heady, you are absolutely correct about being pro active. We bought a motorhome a year ago with all the bells and whistles one could very want. We have decided to sell the thing. I waited for Mike to ask me if we should sell the motor home even though I had it on my mind we needed to address the subject sooner than later. I feel we are very fortunate to have met a Neurologist that just happens to be doing research on PSP. We met with her yesterday and she wants Mike to see a Neuro Optician, start PT, speech therapy and some more cognitive testing. She was very up front with us. Her thought is we are going to do everything that can be done to keep him physically and mentally fit. We also know what we are about to enter is very scary and it may not do Mike any good but, we have to stay positive.

I do have one huge concern. How do we as caregivers keep a healthy attitude. I am a Christian and I have talked to my pastor but I find myself getting very emotional very often and I have what I call CRYING JAGS that just don't stop. Any advice?

[Heady in reply to Marion1946]

Sorry to sound flippant, but this when we need shares in a tissue company!!! Yes, I cry buckets, do most days, but it doesn't change anything. The only thing I know that works, is to keep positive. Hopefully your faith will help. Unfortunately, I haven't got that!

Do you have to sell the Motorhome? Can you drive it? We use to have one, but sold it. S didn't like driving it, I got scared. Turns out this was one of the first signs, spacial awareness gone! But if you can drive and your husband can cope with the life style, it does keep life a bit more normal. We have had to give up most of our previous life. Spent a lot of time, hiking, trekking all around the world. S use to rock climb, obviously PSP doesn't permit this sort of activity now. Did give up camping, but just bought some new camp beds and have managed it for a couple of nights this year. Worth their weight in gold!

I never use to drive before, apart from to work and the supermarket, now it's only me that drives. I hate it, but if it's the way we can carry on, then so be it! I am really sorry, but it's you that has to do EVERYTHING now. Doesn't mean he gets out of unloading the dishwasher, or making a cup of coffee, if you can stand the hassle getting him to do it, I can't!!!

Honestly Marion, life does carry on, it's just different. You can still enjoy some of the things you use to, it's harder, but possible! Back to the positive attitude. We still fly to South Africa twice a year. Wheel chair assistance is brilliant and at no extra cost!

Use what ever power you have got access to. You will be able to cope with what life is throwing at you, because like the rest of us, it's our loved ones have this horrible disease and we have to be there for them. No choice, nor do I want one, this is where I want to be. S needs me and I WILL do my best, not to let him down and so will you!!!

Lots of love

Heady

[peterjones in reply to Heady]

good on yer heady have a great day mate a very sensible approach take care matey peter jones queensland Australia psp sufferer stay positive mate your doing a good job

[wifemo in reply to Marion1946]

Hi Marion -

I still remember the day in our campervan when Tony pulled over and said "You drive" - that was the day we knew PSP had really got him, as before that he was a bad passenger. If you can, as Heady says, take over, but it was easier for me with a smaller vehicle.

Best of luck

Mo

[Heady]

Thank you Peter! I draw on your influence and attitude and everyone else on this site. You have all taught me this is how life is and we all have to live for today. Some days I even believe you are all right!!!

Lots of love

Heady