New to all this

Hi , I am new to this site, my mum has recently been diagnosed with psp after a 4 year wait, I promised my mum years ago that she would never have to go into a home and I still stick to that promise no matter how hard this gets, its not because I think badly of them but just because it's her decision and I want to honour that.

I have given up full time work as I have fibromyalgia and would not be able to look after mum working full time. I have been reading some of your posts and want to thank you all for sharing something so personal in order to help others. We have a physio and a speech therapist come once a month but other than that we are alone.i go to mums every morning as I have a car and my sister and 5 of our children take it in turns to go every afternoon, it is adequate at the moment but I am afraid of what the future holds.

Mum was on sinemet and resaguline until recently as they seemed to make her worse and I wondered how the rest of you manage with meds

Thanks

15 Replies

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  • Welcome to the site. When my husband was first diagnosed in 2010 I promised him that I would always nurse him at home and he would never have to go into nursing care. I've since changed that to, I promise I will care for you at home as long as I am physically able to provide you with all the care you need. In 2013, lifting him hurt my back and I couldn't get out of bed one morning. In desperation I rang social services who found a place in a home nearby 2 days later. My son had to come and stay until then. You have a supportive family around you, as I do so hopefully your mum will always stay at home but don't feel guilty if things don't work out as planned will you. Eventually she will need 24 hour care, hopefully not for a long time.

    Medication works for some but not for others. My husband used Sinemet for a long time but the neurologist suggested he stopped taking it and see if there was any difference. There wasn't and as long term use can have adverse side effects, he doesn't take it now. Nothing we have tried has made a difference for very long so as he has difficulty swallowing tablets now, he only takes them for colitis and enlarged prostate, nothing for PSP.

    I wish you well in your caring role. Look after yourself and keep posting.

    Nanna B

  • Thanks for your speedy reply, it is comforting to know there are other people out there who can give a personal account as no one I know has even heard of it, atm mum can stand (aided) and occasionally walk with a frame (only when 1 of us is there), but is having trouble with her eyes and swallowing, I am aware that at some point I will have to move in but hopefully I will be able to cope. Thanks again speak soon x

  • Nanna when you say the Sinemet didn't work . in what way was th can you explain . my John always seems to to work for a few hours after taking thm , migh switch back for a while then it's time to take on again , so hey ho

  • Hi, really sorry to have to welcome you to this site, but it is the best place! You will learn a lot, I know I have. Everyone is a carer like me or a sufferer of PSP.

    You ask about drugs. My husband is on a shed full, Sinemet is the main one to help PSP. Lots of people can't take it, but S seems fine. I certainly notice if he hasn't been taking them properly. So I suppose it's trial and error, to find what works for your Mum.

    I agree with NannaB, about promising to look after someone at home. My husband is still upright, but I can't leave him alone because of the risk of falling. Once down, he doesn't know how to get up, until I tell him! So I am just promising to care for him, as long as I am physically capable, or his needs are more than I can cope with. PSP is an evil all consuming disease, nobody can cope with it alone. So make sure you get all the help that is offered and plus loads that's not immediately forthcoming! It is a huge battle, us carers have to go through on a daily basis, so please, please take care of yourself.

    On this site, we all rant, rave, kick and scream about our lives with PSP, nobody judges, we are all going through the same feelings! Ask any question, someone will know the answer, or be able to point you in the right direction, most of all, we are there for each other, to let you know that you are NOT alone and what you are feeling is normal!

    Our motto is "one day at a time"!!! It's not easy, but if you can stay postitive, get your Mum out, keep her as active as is possible, life does carry on. You say that your Mum has physio once a month, I would up that to at least twice a week if possible. Are you in the UK? If so, see if you can get referred to your local gym, that run classes for Parkinsons, it's a huge help! Either your Physio or GP will be able to help. S is really struggling at the moment, because of Christmas and not been able to get to his classes!

    The moral of this story - keep you Mum as active as she can be, mentally stimulated as possible and keep positive. It's the best and only drugs that work!!!

    Look forward to "talking" to you again.

    Lots of love

    Heady

  • Thanks for your speedy reply, you have some good advice yes I am in the uk so I will certainly look into it, where we live mum can only get anywhere if I have the car and unfortunately I think that too is on its last legs lol, I do see a difference when she has been out even if its to my house, although its only for short periods due to the bathroom being upstairs, and she had her pride to content with. Thanks again for your imput and all the best to you x

  • =IF YOU SEE WHAT I MEAN WELL M ATEY IT SOUNDS VERY COMENDABLE LOOKING AFTER YOUR MUM BUT I WILL WARN YOU ITS A LOT OF DAMMED HARD WORK AND YOU WITH FIBROMYAGLIA THERE WILL BE TIMES WHEN YOU WOULD CRY AND TIMES WHEN YOU WILL BE HAPPY ITS A LONG AND TERRIBLE ROAD TO, HAVE TO GO DOWN FOR YOU AS A CARER AND DEAR OLD MUM WHO HAS PSP

    BUT YOU WILL HAVE THE REWARDS OF KEEPING YOUR MUM AND THE BONDING YOU WILL GET FROM IT I WISH YOU ALL THE LUCK I N THE WORLD AND PATIENCE AND STAMINA AND MAY YOU USE ALL 57 -VARIEATES AS YOUR NAME IMPLIES

    MATE I AM A PSP SUFFERER I TAKE NO MEDS YET\\\\ ONE BECAUSE I DONT GET OPFFERED ANY AND TWO IF I CAN DO WITHOUT THEM I WILL BE HAPPY I AM SURE THAT MY EM WILL NOT PUT YOU OFF OF LOOKING AFTER MUM MATE YOU SOUND SO ,POSITIVE\\\THERE ARE A LOT OF GOOD CARING PEOPLE ON THIS SITE

    AND A WEALTH OF KNOWLEDGE WHICH YOU CAN TAKE OR LEAVE IT\\ITS ENTIRLY UP TO YOU OR IF YOU JUST WANT TO GET SOMETHNG OFF OF YOUR CHEST YOU CAN NEARLY ALWAYS FIND SOMEONE AROUND NOW I\ LIVE IN AUSTRALIA I AM GETTING READY FOR BED BUT THE TIME DIFFERENCE DOES NOT MATTER \\\\\ I TAKE IT YOU HAVE JUST HAD LUNCH OR A SNACK THERE IS USUALLY SOMEBODY ABOUT ON THE SITE MATE FOR LETTING YOUR HAIR DOWN OR HAVING A SCREAM OR TWO I EXPECT YOU WILL GET MANY EM LIKE THIS ANYWAY MRS HIENS 57 VARIETIES \\\\I WILL SAY GOODNIGHT TO YOU TAKE CARE SEE YOU AGAIN ON THIS SITE REGARDS TO YOUR MUM MATE TELL HER TO STICK WITH IT SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

  • Thank you Peter, it's right what you say about bonding, we have had a lifetime of not getting on as we are so different but the high point of all this is that we have become closer than ever, at last I am doing something that I know she appreciates which gives me some comfort.

    look after yourself and all the best for 2015 x

  • As far as I know there are no meds specifically for PSP. There are meds that are for the symptoms though. You might ask your doctor about Amantadine as it helps, only slightly, for SOME patients. Jimbo

  • iim

    h ow was hsls 4 u

  • sorry mykb not workingl

  • Jillann, No problem with your typing. Always enjoy hearing from you. Holidays were a bit tough. I only put up a few Christmas things. Wasn't much in the mood to celebrate. Hope your holiday was good. Jimbo

  • not brilliant had uti most of holiday

  • Wow, how ugly that must have been. Stay strong my PSP friend. Jimbo

  • Hey Heinz. I recently left Australia to move back to the UK to care for my mum so understand some of what you're experiencing. Your mum should have access to a neurologist, physio, Speech & language and Parkinson's nurse in the UK. All of which have been very helpful. Also ask for an assessment for a personal health budget as this will provide financial help towards carers, dependant on your mums age and financial status obviously. I'm living with my mum and it can be exhausting and frustrating but it is a chance for you to show your mum you care. Like you I was never particularly close to my mum as a child but have always maintained close links as i never wanted her to be lonely. It's a difficult condition for your mum to come to terms with, I think my mum is still struggling to truly appreciate it. And terribly frustrating and soul destroying for the sufferer but as many others have said get all support possible from all avenues and do whatever you can to make your mum, and yourself, laugh and smile each day. Whether its listening to music, making nice jokes of some of the tasks you now do for them, tasty food or a nice foot massage or pampering. Hang in there! And if you ever want to talk there are lots of us out there ready to listen :)

  • It took 4 years to get a diagnosis for my husband, too. I don't want him to be looked after in a residential situation and I made it clear to him from the start. I am doing this on my own but I feel I can do it with support. An assessment from an occupational therapist took time to get but that started the ball rolling and the OT service has been really helpful from a practical point of view. My husband also goes to the day hospice once a week which is wonderful. The staff are made of pure gold. He has his own named nurse, they give him a three-course lunch and keep him entertained. There is also the benefit of a physio, OT, chiropodist and medical liaison with the GP which saves lots of different appointments and the hassle of getting there. Volunteers pick him up and I get a bit of breathing space. Your GP makes the original referral. It's a cheerful place. They're all about the quality of life.

    We tried sinemet but the consultant took him off it as he didn't like the way he was walking.

    with warmest wishes for 2015

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