What an awful year it has been so far.

[Peter2]

For about three years my husband has been having a range of difficulties including unexplained falls. The falls he has been experiencing have been getting more and more frequent over the last 14 months. Initially he was diagnosed with depression and commenced treatment. This did help a little in that his mood became lighter and he was less angry. There were times when he became angry over very minor issues. After a few hospital visits, many blood tests, two scans and psychological tests he was given a diagnosis of PSP. I contacted the PSP association and received a great deal of very useful information. We have also spoken to the local specialist nurse, she also was very helpful.

PSP is having dreadful effect on our family, my husband won't talk about his condition (thankfully he can still talk), he is having very disturbed nights and gets up and wanders around about 3 times each night, by day he starts various activities but never completes anything and he spends a great deal of time sitting doing nothing. We have been told by the consultant he has a mild form of psp.

I can see by reading the blogs there are people who are obviously much worse than my husband and I admire all their carers for what they are doing.

As a family, I have likened our current situation as being on the same roller coaster ride, but all of us sitting in different cars. PSP is tearing us apart.

How do people cope in this early stage of the condition? My husband can still walk albeit slowly, he does fall frequently, his behaviour is unpredictable, and conversation is very one sided. He has also just been told he will never work again. This news has been devastating to him.

[SuzieQ]

Hi there. So sorry to hear about your difficulties. Sadly, there is no real answer to coping. As carers, we just do. It is the love we have for those we care for that helps us through the dark days. My husband was diagnosed just over 12 months ago and when I look back at the way our lives have changed as a result of this horrid illness, it reduces me to tears. All of us on here are at different stages with the illness but we all know exactly what you are going through. It is very hard to understand how this illness can change a person's personality so much. My husband is a very different man now. Some days he tries my patience so much and other days we are able to laugh at some of the things he says and does. (These "happy" days sadly seem to be getting less). I get angry that the illness has taken over our lives and is so restricting. I miss the man he was but have learned to cherish the good days and try to remember that although he tries my patience, if he had a choice he would not want to be in this position. I continually ask myself "Why, why, why? Why did it have to be him? Why us?" There is no answer to these questions and I try to take my strength from knowing that we are not alone and maybe, just maybe, one day a cure will be found.

I hope you will continue posting on this site. From my own personal experience I have found it really helps.

My very best wishes to you and your family and I hope your "down" days will soon pass and you find that inner strength to carry on caring.

Take care..............SuzieQ xx

[Pinda]

We have been down this same route.We have spent almost 4 years waiting for a diagnosis and got it 3 weeks ago. It has put a huge strain on our marriage ,the man I loved is no longer the man with me,I know exactly what you mean.I am tired and exhausted already and this is a long road to go.

Every day at a time,is what everyone says to me,every day at a time.

[Louise-Alabaster]

SuzieQ comments could have been written by me as well. Dad had it for 6 years we think and the last two were awful, sometimes I look back and it scares me how we and him moreso kept going. Ask for all the help you can get, dont be embarrased to ask, its very hard to cope with alone.

Your husband is still in there though - keep giving him a loving hug and let him know you are there - dad used to find it embarrasing and humiliating that we had to help him so much - I think often the moods can be linked to that - they are angry at themselves and you always lash out at the ones closest to you - he is probably terrified you'll leave him - just let him know you'll be there and are there to help him through - and blog!! it really helps to know you are not alone xx

[bettynader]

I have just found this blog, and my heart goes out to all the care givers. My husband was diagnosed with PSP last August (2010). The personality changes began quite a few years prior (6/7), but the physical changes began after he had a Lumbar Fusion in October of 2008. After months of PT he was never able to walk with a normal gate. That is when we began the search for a reason. As it turned out Ed has PSP. We spoke about it, and we both decided that we would take one day at a time, as this is the hand we were dealt and would play it out to the end. He was the best husband and father anyone could have ever asked for. He was always very athletic, always at the GYM, and was always a runner. My heart is broken for him, not for me. My plan is to be here night and day for as long as necessary. I know he is secure in my love for him. We celebrated our 50th wedding anniversary the 27th of May. Ed's speech is slow, he now wears pull ups, and sleeps a lot during the day. Some nights we are up every couple of hours and some nights we get 5 hours straight. I know this is not going to be easy, but I refuse to worry about what the future will bring. If he is able to get out of bed tomorrow, It will be a beautiful day.

[Peter2]

Thank you for the comments people have left to my first blog. Knowing there are others out there who can understand the frustration, fear and loss being experienced on a day to day basis is comforting.

Today has been a better day, my husband and I had a conversation about how he feels so scared about the future with psp. This is the first time he has spoken about his condition without getting angry. I hope we have more of these days, rather than what normally happens when my husband just doesn't speak for long periods and gets upset if he feels he is being asked too many questions. We have been advised to give him plenty of time to answer any questions.

Another good thing happened today, at last a physiotherapy appointment has come through.