Hi everyone had a bad few days, George is doing the opposite to everything I ask him, I feel like screaming.
He keeps calling me all the time, as soon as I sit down he wants something, feel like a yo yo, he keeps asking me to push his chair forward, when I push it forward he just pushes it back, I feel like screaming. He has to go into hospital on the 17 of June, he has just informed me that he does not want to go, until he has seen our GP, they are going to do some tests on him, that is what he wanted, feel like I am a lost soul, can't seem to do anything right, and of course this is all my fault, George says I told the doctor he had PSP, never heard of it until doctor said he had it last year, oh well on day at the time.
He hates taking medication, he thinks the hospital and going to give him more medication, but they are aware he does not like taking anything, also the hospital is in London, and we live in bishops stortford, hertfordshire, we is a journey for me every day, I have not a problem with going up and down.
Oh well sorry about my moan just feeling so lonely today, one day at a time, let's see what Sunday brings, going to our daughter for dinner, so will try and cheer myself up before we go. Love to you all Yvonne xxxxxxx
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Yvonneandgeorge
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So sorry you are feeling down Yvonne. I can relate entirely to what you say about wanting to scream because you can't do anything right. D is just the same - just get him comfortable and gather everything he wants to within reach and then he wants to get up again (which he can't do without my help). He is mostly confined to the wheelchair now although I think it is important for him to change to the armchair or the riser recliner every now and then so that he has a different sitting position and also to excercise the leg muscles and practice standing. He still thinks he can do this by himself until he falls back and realises that he needs help! I can't leave him for a minute! If I ask him what he would like to do, or where he would like to sit, he just says he doesn't know! I suppose we should be glad that they can still express an opinion though. It must be much worse when there is no communication at all.
We are going to see the GP this week just for a review - mobility and cognition have taken a big dip recently.
Do hope you have a better day tomorrow. We are going to London to celebrate my birthday (my 60th!). All organised by our daughters which is very sweet of them and I do appreciate it but just now it seems a worry as to how we are going to manage it all!
Have a lovely day, enjoy your birthday treat, all will be ok you will have help on the day. Hope all goes well with the doctor, George has two ladies come in to do some exercise, which we have to pay for, waiting list is very long, we have been waiting since November, still never mind have a wonderful birthday Vicki. Yvonne xxxxxxx
Thank you NannaB. A bit apprehensive at the moment (not about the big 60 just about getting D to London and back and to a restaurant with a selection of family members!) but as Yvonne said, at least there will be lots of help!
Hi Vicki, I too, have just celebrated my 60th birthday. Had a brilliant time. I was going for 60 different celebrations, but only got to about 10. Not bad, as I rarely get even one! Xmas Eve baby!!! Make the most of feeling special. We all need that, especially now!
Thank you Heady for the birthday wishes. Wow even 10 celebrations sounds pretty good! Think I will only manage one. Quiet day so far - just cut the grass, now having a coffee, D snoozing in his wheelchair. Just going to get ready now for trip to eldest daughter in London and then an evening of fun organised by her and our other two will be there so lots of other people to push the wheelchair etc. - a real treat!!
oh how I can relate. as soon as I am down he needs this or that. we now have a table full of his this and thats right next to his chair. It helps only a little. I remember when I first quit my job, I would witness the constant falling....I could not believe this was real. Like I said before I thought this was some sort of passive aggressive assault on me !
! "Why are you doing this to me," i would scream. And I AM the one who told the DR. what B had. Well about 2 or 3 thousand falls (and that is not an over estimate), and I think alot of prayers later, I don't feel so like its a hate reaction from him to me.....
Today is our 30th anniversary!
We cant really go out to eat lest he cough his food and water all over someone elses plate, namely mine haha! so I guess we'll do what we usually do....nothing just eat quietly....I think I might start a scrap book and have B help me...I hate scrapbooking but he may enjoy the pictures of the kids....it's something to do. Give them each a scrap book for Christmas...hmmm that;s not a bad idea.
I;m sorry that did not help you much I do know how you feel......
Like Nannab gave to me , I give you a big hug...hope you get it
thank you Vicki. we grilled rib eye steak and besides having to cut B's steak up, it was low key but enjoyable ....and the steak was delicious....even with me at the grill hahahha.
Yvonne, this to shall pass. Don is not having the greatest day. Keeps on waking around without his walker, when we all tell him he will never know when he might fall. Testing who knows. I am feeling rotten today as well. You are allowed to feel frustrated and upset, you have us to vent to and feel free to do so whenever you have to. I know that lonely feeling, it really stinks.
Also he is frightened about the progressive part of this, as am I along with the side effects of the sinnmet. Reads somewhere that it leaches the body of V B6 but am afraid to give it to him without Dtrs ok. Anyone know anything about that.
We gave it (sinemet) up . didn't do any good. Its for Parkinsons patients. Do not give it to him if it was not prescribed to him...
Curepsp.com is a wonderful site. It is full of stuff about PSP like 6 in a 100,000 people will get this disorder!?.....that's why there is no cure or even a med to reduce some of the problems....when your Neurologist isn't all that familiar with it and all of you caregivers have never heard of it ...you know it's an uphill battle! But don't give up I promise it will get better. I am B's physical therapist and sole support. We do ok. I wish I had someone to talk to but well that's why I talk to you all. Thank you God for this site......THIS has really helped me.
It sounds like maybe your husband has the ability to talk to others? Maybe he could find a support or counselor....to get through some of this....Good luck
abirke, I am confused at the moment. The sinemet was prescribed by 2 neurologists and seems to be making a huge difference. I don't know if his diagnosis is correct. Where to go next is my next step.
Consider how long he has been on it. drug co's say that sinemet will work for a short time but will wear off and have little to no effect on one with psp. When was he diagnosed with this disorder? More imortantly, how long have you noticed symptoms?
Only a month eh. B was diagnosed in march of 2013 but He was showing real symptoms since summer of 2011. And who knows before that, when I think of things that he did I wonder if they weren't because of this early onset of the disorder. Well per the drs. keep him on the drug, and keep a journal of his movements and symptoms etc. this way you may see that he is responding well on Sinemet even 4 or 6 months from now.....he may be difft than others. Like someone said , we all have psp differently but its still psp. ask your dr questions to see if they fully believe its psp get another opinion....not enough drs understand this disorder fully.
Hi, S is Sinemet, tried to stop it, but he got so much worse, extremely stiff and all other symptoms were bad. Put him back on them pretty quick! There is very little doubt that S has PSP, I think they wrote the book quoting his symptoms!!! He has been on them for two years now. Not sure what the side affects are, but I'm not going to reduce the tablets again!!! Lots of people benefit from Sinemet, like most things, you only hear about the ones that don't!
Thank you both for your kind words, glad Don is at home and he seems a lo better. Abrike thank you I now we are all going through this, but some days are worse than others, but that is life, this horrible illness, takes so much away from them, and sometimes I have no patience, and then I feel bad, for getting upset, then he calls me again, and he asks for 3-4 things and thinks I can do them all in one go, he keeps saying shut the door, and our bungalow is so hot, he says he is cold, there is no happy medium.
Happy anniversary to you both, and hope you enjoyed your dinner. George and myself have been married 47 years, we could not go out for the same reasons as you, children came around and we had dinner, George does not want to go out, and it is an effort to get him up, the only days he will get up is when he goes to the centre, twice a week.
Audrey look after yourself and a big hug to you all. Yvonne xxxxx.
Have had a bad week, feeling can't cope and very weepy and Two days of verbal abuse. I decided to log in and ask if anyone else gets similar and lo and behold there was your post ! Suddenly I don't feel so alone. I too am accused of telling the neurologist my husband had PSP. It's all my fault, the specialist knows nothing, I am the one who stops him going out on his own, and so on . This ranting and raving periodically rears its head and I don't know how to deal with it. It used to be directed just at me but recently others have had a dose also. It's so hurtful, I'm afraid I lost it yesterday and told him he was fortunate to have reached 70 before becoming ill as my sister lost her life at 34 due to an illness, his brother developed MS at 55 .
Oh well , onwards and upwards , enjoy your lunch out , best wishes to all.
Just typed a long and supportive reply to you and it seems to have disappeared completely! This seems to keep,happening to me - it's so frustrating.
Anyway the gist of it was that I had to put up with a lot of anger directed at me at one time but that that phase seems to have passed. Unfortunately the improvement in that has coincided with a general deterioration in D's condition but at least we are in a calmer phase now. I hope you will find that things become less aggressive too.
Hi gipsywoman George was very verbal a while ago, but now he does not say anything much to me, talks to other people, but not much to me, bear with it, it will get better, it is hard, still says it my fault about the psp, but no more shouting.
George gets up late and today I have been on my own, no visitors, children busy, George got up at 3 o'clock, then wanted to go to bed and 9 o'clock so been talking to the dog but he has got fed up and gone to sleep. Made myself a cup of tea and a chocolate bar, no wonder I am putting on weight, sorry all just feeling low today Yvonne xxxxx
Hi Yvonne, it's terrible how the low days come upon us isn't it, I too am a Hugh stress eater, I was doing well at Slimming world until my husbands diagnosis, then it all went to pot. On a bad day I've been known to drive to the nearest shop and eat 2 bars of chocolate in the car park, then come home and have cake and coffee , come meal time I don't want a meal.
The hard thing also is none of our "friends " visit , only my best friend, it's as if they don't know what to say. It would help such a lot if they did. I don't like to bother the family much , it's hard for them at work all week and kids to cope with , I don't feel I can ask if they would sit with him for a while .
This is such a good sight to share our thoughts , how long has your husband been diagnosed?? We are in our 3rd year now, progression has been fairly rapid this year. I hate this illness.
Hi gypsywoman George has not been well for a long time, he was diagnosed in May last year, we went on holiday to Cyprus he was unwell we went to a private doctor over there who diagnosed George with psp, he advised us to go to quees's square when we returned to London, which we did and they diagnosed him again in January this year, they are taking him in in July to do some test.
We moved up to hertfordshire a year and a half ago, not made any friends up here, my oldest friend lives in london we met up now and again.
Like you I don't like to bother the children they work, and my daughter who lives around the corner has 2 small children, they all do what they can, but I think they could maybe do a bit more, my eldest daughter said we need to have a family meeting to see how we can help you mum a bit more. Always done things for myself, so I don't like to ask for help, but things have got more difficult, with walking, talking, wetting himself, 4 bed changes this week, he does not want to wear anything, he has a plastic bottle, which is more trouble than it's worth.
I go to weight watchers but my brother has been over from Cyprus with his wife, so my diet has gone out the window, they left on Thursday, I miss them so much my sister in law was so helpful, she helped me so much, and my brother cut the grass before he left, one off the reasons I am feeling so said oh well tommorow is another day, going to our daughters for dinner.
Oh how I know exactly what you mean Yvonne. Repeating the same instructions over and over again and when you fall into the chair, he wants something trivial ! I too have P calling me even when I am only making tea or clearing the dishes, let alone if I dare go to the loo.
The emotional strain is enormous and although we all can sympathise with you on this site, it doesn`t help you at that moment when you feel like screaming.
Do you get ang other help with carers or similar Yvonne?? I don't but physio come at present and we also had occupational therapy visit and a GP carers coordinator met me, she instigated physio, OT and telecare system which means I can go out for an hour or so. However on the two occasions that he fell when I was out he didn't think to press the alarm around his neck !!! I had no support until I changed GP.
Previous GP told me to call back and see her when I couldn't manage anymore.
We don't get much family help as his family live in Scotland and we are in the Midlands and my brother lives in USA, my sister died years ago, so I sort of feel lonely . Well keep in touch Yvonne, hugs to you also. Xx
Gypsy woman George goes to a centre time a week, and Tuesday afternoon the lady from crossroads come in for 3 hours, when she came in on Tuesday I went out for a coffee, had a call, from the lady sitting with George, he had an accident and wet himself so I had to come back, he did not want her to call me, said he was ok, does not seem to bother him. Our GP are good as well, when we lived in north London, doctors were useless. Look after yourself Yvonne xxxx
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