GP's and consultants don't seem in any hurry!

I am a little confused as my husband, Ben's GP and neurologist don't seem in any hurry to get things underway that we will need put in place in the future. Ben is still in denial about his condition so can't discuss things with him at present but I get scared that his condition may deteriorate more quickly than they expect. The GP has come across PSP twice before and said he was actually seeing a patient today who was diagnosed 10 years ago. Ben has deteriorated cognitively over the past 3 months and has experienced inbalance the past 2 years. He isn't working or driving at the moment, he imagines that he will get better send return to work and driving but I very much doubt that. Am I being too pessimistic?

11 Replies

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  • Hi Katie, PSP is a very slow illness. That's why it's so cruel. We have to watch our loved ones deteriorate an inch at a time. I know it's very frustrating, wanting everything in place NOW. We all want that, but the problem is, what's needed today, will change by tomorrow anyway! There is nothing that anybody can really do for you, accept offer respite care and actual physical help with care. I guessing you don't need that yet.

    I would get him to physio, preferably a Neuro physio. Telephone social services to get on their books, so if something happened to you, they know about your husband. Crossroads is a must as well, they will do a carers assessment for YOU, to make sure that you are getting the support you need. Next - book a holiday, a night away, meal at your favourite restaurant, anything to get life back on to an even keel. Normality, is the best weapon against PSP, well our new normal!!!

    Try not to worry to much about tomorrow, today has enough challanges.

    Lots of love

    Heady

  • Thanks Heady, good to get some reassurance.

  • I am in what seems to be an identical situation to you and your husband. My husband has just had a second opinion as he was in denial. He would appear to be at about same level of deterioration also as your husband. We too had no way pointed for us by GP or either of the two neurologists. I felt totally isolated and scared of the future. I went to see GP who told me t o call again when I could not manage. After finding this site and getting lots of ideas and advice we changed doctor and surgery. We saw new doctor for first time last Friday, she had never heard of the illness but within 5 mins promised to look it all up, and contact Social services, occupational therapist and a neuro physiotherapist and refer us. Today social services have telephoned and it has been mutually agreed that I call them when I think they can help practically eg help to dress or shower or put to bed. We don't need that yet but we are now on their system. I am sure we shall shortly hear from the other two departments. My advice is to go back and ask for these referrals and get on board . Best wishes , I know how you feel , it kept me at wake worrying about the inevitable. Also you could ring or email the psp association with regards to any benefits you may be eligible for. Our extra bit of financial help allows me to take my husband out for a ride and cuppa somewhere or buy a gadget that makes life a little easier when you have to it all yourself.

    Gypsy woman

  • Hi Katie, we are in the same position my husband is in denial we have has 2 opinions the coughing is the worse thing, everything we come into place, take one day at a time. Before you go to the doctors ask the receptionist to ask the doctor to read up on PSP before your appointment, I did that and the doctor had looked it up, they are going to recommend we see the same 2 doctors so you don't have to go over it again and again, we are also waiting for all our other appointment to come through good luck love Yvonne xxxxxx

  • Facing the reality of a PSP diagnosis is difficult for patient and family. However, it is important that the patient acknowledge the disease in order to fight it's progression. Maybe if you told him that he might acknowledge it. Being in denial will NOT make the disease go away and will hinder efforts to delay it's progression. Just take one day at a time with PSP and don't anguish over where it my take you and your loved one. Worry is the interest you pay on trouble before the trouble arrives. Always, always remember "Don't let PSP define who you or your patient are!!" It's important to be the same person you both always were. PSP will try to define you but please don't let it do so. Jimbo

  • I will try to take your advise on board, I guess as we both get used to the idea that we have an uphill struggle but not to let it get the better of us we will be more equipped to deal with the day to day changes and issues that we will be confronted with. Thanks for your wise words. Kate

  • Well that's REALY great advice Jim. Butttt if a man decides he's not accepting something (a diagnosis he doesn't like ) yu can't find make him !!! I no Mine never even would admit he wasn't gonna get better But whatever It got him thru Sometimes it's a frustrating War. Buttttt. No one wins with PSP I found keeping as calm / upbeat as I could be Saved me At the end of the day !!!!!!

  • Unfortunately it is up to you to push things ahead. Don't focus on your husband's denial or his optimism, just push the neurologist for a good diagnosis and then you take the lead. Find out as much as you can about the illness, what you need to put in place in terms of possible help, services, and financial concerns. Assume that you will have to make some big changes and prepare. I think the denial is to be expected and not necessarily bad as long as you are not in denial. Unfortunately it is lonely to hold the information alone.

    Jill

  • That is REALY good advice couldn't of said it better 💐💐💐💐yu can do it !!!!!!!!

  • I think my husband is at about same stage as Ben, I understand how you feel. You and I are looking ahead and planning and wondering how we will cope and who will help. I had got to the panic stage on this and as my husband had not see GP for 2 years I went to tell GP of the deterioration. Her reply .....come and see me when you can't manage ! . Within 6 weeks I had changed surgery for us both. Shortly after seeing new GP I had social services ring me , it was mutually agreed I do not need their help yet but they have me on radar and I have their number to call them if needed. A neuro physio is to call at the house and the occupational therapist is due. Read on this site what help others have and go back to GP and request contacts be made. Also look up your local carers association they too can be helpful. I have found out such a lot from the people on here , we all feel the same way at times. Best wishes

  • Our GP was very understanding as has treated PSP patient before. He asked me to pop in by myself and said that there was plenty of help out there when we need it and asked if I needed counselling, which I said not at the moment but would ask when I feel the time is right. The thing is he didn't seem too concerned at putting anything into place yet as said was a slow progression. My worry is that Ben might not be that slow and don't want to panic if we need help sooner rather than later. It is the uncertainty that eats away at you isn't it? Thanks for the reply as it helps me to know what I need to press for, will go back to GP to relay my concerns.

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