I'm furious

W was due for his annual review in December 2016 with his neurologist.

27 November I emailed neurologist to say we hadn't received an appointment. To cut a long story short, after several emails I was finally advised today by his secretary that W will have to wait a further 12-14 MONTHS. Needless to say I was hopping mad and will be contacting neurologist tomorrow to say this is not satisfactory and we want an appointment asap. I am also going to contact our specialist PSP advisor. Rant over, thanks. Nanny857xx

35 Replies

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  • I'd like to know why they are so busy. It takes 3 months minimum to get in to see ours and then he has an anxiety attack when he sees how far Bruce has gone down. Well after the 2d visit after diagnosis I am considering whether we need to even go back! but since he is on medicare (though we pay a private insurance....i don't know) I feel like we need to go back to stay qualified for this insurance.... so we'll go back.

    I wonder if the neurologist is going to be able to do any more for your husband than he already has. your PSP advisor probably has more info and resources than your neurodoc.....

    Good luck I hope you get to see your doctor forthwith !

    AVB

  • I know I may be goofy and compulsive....but when I go to the neurologist I take with me a list of medications/supplements/blood tests. I ask, "Why isn't he taking this?" (Thank you EC for the new ones.) "What is the research on this?" "Why aren't we doing this?" I ask for specific blood tests (my latest is homocysteine (trying to get it to less than 5) and what diagnostic tests are recommended for ataxia evaluation e.g. anti-GAD test). Although long, the YouTube video I recently posted also had a wealth of information. I think every neurologist should see it.

  • Wow you got this down....does it seem to help? I mean do you get any more of a conversation than "he is progressing as expected with PSP?"...I've got to find that video...I was too tired and forgot ....but thank you for finding it...

    AVB

  • I have to agree with abirke (which I am sure he is not...abirke I mean Tee Hee). The last time we saw the neurologist he was unable to offer any advise and we left feeling 'what a waste of time'. I know each of us is difference and so if your neurologist does help you both Nanny then go girl xxxx

  • Andrea Birke...aka abirke... aka AVB :)

  • Really hope I did not offend, me and my assumptions. Have a nice day xx

  • no no no darlin you can't offend me...I hope I didn't offend or make you feel bad; and believe me, half the time I don't know who I am .....I have to give the pharmacy my birthdate and because I have to say my husbands so much, I can't remember without first telling them his, "Birthdate please" "5/9/60 no wait 2/19/61" It's like a song you can;'t think of the verse till you sing the whole thing! So you see how can I be offended I can't even remember what we're talking about ...hahahaa

    AVB aka , mam are you ok?

  • Oh, Mrs. b, you are so young for all this!

  • I thought that too when I read dates of birth. xx

  • I was thinking the same ec. Too young you two.

    Rx

  • Too young? Well I'm marching right back and getting my money back!I I wonder what the median age is for this fun little life of horrors...I think it's in the 60's but we are not the only ones here that started PSP in our 50s!

    And don't worry, I look like I'm in my 80's (no offense to those who are in their 80s and don't look as haggard as me) so I'm just living up to the part I guess.

    ((HUGS))

    AVB

  • Oh how funny and sad at the same time, what a journey we are all on.

    I was up 3 times last night with G, 2 wet beds, bless him. He has a convene but for reasons beyond me they came off not once, but twice last night !

    I sing to Geoff often, our wedding song was 'Have I told you lately that I love you' and so that is one of my favourites, but then I sing silly songs and make up the words which makes G laugh.

    Sending love and hugs your way.

    You are doing an Amazing job xx

  • I'm glad you can still have a sense of humor through the rough times...It's not easy to sing your wedding song when there's pee all over everywhere. Even with the cathetar, two things are happening...leakage (Depends Bed Pads, the best to keep things dry) or like what he seems to be doing the past few days , not going at all....even with the permanent cath! If theres not alot of output today, I have to go in and flush....it's not hard, but anytime you intrude it's a risk of infection.....Dr has recommended a suppository which relaxes the sphincter and he can go....Why they telling me about this now.....if that's why he needed the catheter in the first place Because he could not go), shouldn't we have started with the suppository ? hmmm....

    Well I hope you have a good, dry day

    ((HUGGIES)) hahha

    AVB

  • Oh my sweetheart. I know.

    G has a convene it came off twice last night so 2 complete bed changes and a clean duvet. All washed now and re made and ready for another night.

    We have Marie Curie nurses do night sits so Tuesday Thursday. and this coming Sunday I get a better nights sleep. Do you get any night help?

    He also takes a sachet dissolved in fluid called Laxido, he has 2 or 3 sachets a day depending on how his bowels are behaving, have you heard of these?

    Are you in the US or UK?

    I know we differ on what we can get across the ponds.

    The trouble with PSP is the bowel tends to get impacted further up and so for us enemas and suppositories are not always the best way forward.

    Take care and if you can rest up. I know how hard that can be and all I can do is ask the angels to watch over you and look after you.

    Just remember that you are Amazing ! xx

  • Whoops just noted I have repeated myself about wet beds, I will blame it on tiredness LOL

  • Thanks Dottie, you're amazing too, In fact we are all amazing....10 years ago, even 5 years ago was any of this PSP stuff our concern ? Probably not!

    I live in the US. We do have a home health nurse who comes by once a month to change B's catheter. As I said once before , the brand, Depends Bed Pads are the best for keeping things dry. just take that wet thing off, put another down , change the clothes of your darling, and back to bed in 15 minutes! I have two underneath the bottom sheet, and two on top where B sleeps they are rather narrow so I double wide them for extra protection....They don't slip and completely absorb!.....I need to call the Depends company and ask for a job!....

    So far, B has not had problem with constipation. The suppository is to relax the sphincter at beginning of the urethra so he can release urine!. It can go into spasm because , well, thats another thing that shuts down with PSP, or it goes into spasm because there's a foreign body ie a tube intruding the sphincter's space! He seems to spasm more at night than in day.....Luckily a nurse reassured me that if he is releasing 30 ml of pee an hour, he's doing ok! He quite often releases about 200ml an hour....So if he doesn't do anything, that s alot of mls floating around his bladder!

    Well now that you have my hubbies bladder bio, whats say we go out and have a beer...hahah I'll just have ginger ale , thank you!

    I see your new post that you repeated yourself, I see in your new post that you repeated yourself, huh....I do that; as well as go back and read my nonsensical posts, I don't know how anyone could understand....I often wonder if I shouldnt clarify.....nah only make things worse.....

    May our nights be dry and our days full of good memories made!

    AVB

  • I'd be thankful Nanny857 that you haven't got to make the effort to get to the neurologist. The one we saw a couple of times just looked at my husband, got him to walk a bit and then said he is progressing as expected. He then said he could do nothing for him and he could see it was an effort to get him to the hospital so it was really wasting my time. He reminded me I could contact the GP, speech therapist, occupational therapist, hospice, dietitian...the list goes on, shook our hands and wished us well.

    Take a deep breath, have a drink and try and stay calm. Your health is important as well. High blood pressure won't do either of you any good.

    Sending you a virtual hug.

    ❤💐

    XxxX

  • Did we see the same neurologist NannaB? I thought it was all rather pointless after the initial diagnosis x

  • Indeed! Calm breaths and a walk in the garden instead of to an unfulfilling specialist.....

  • Thanks NannaB, I've calmed down and had that glass of wine. Hope you are doing well. Lots of love Nanny857xx

  • That's good 👍🏻. I'm doing OK thanks. I'm getting used to coming home to an empty house and getting up in the morning with no carers or Colin here. I'm so pleased I have my guinea pigs to welcome me with enthusiastic squeaks as I come through the door or downstairs. A dog would be good but I'm not at home much and I am allergic to cats.

    I miss my darling a lot, and still talk to him but life is treating me well. I'm so pleased I made/kept friends and joined the U3A while Colin was ill. I've even turned down invitations now so I can get the paperwork done and sort the house out as before Christmas I didn't have time to do anything as I was gallivanting every day.

    Make time for yourself. It used to annoy me when folk who had no commitments said they needed "Me time". Full time carers do need and deserve me time. Not just to help us cope with caring for loved ones, but to keep us in the community, confident to mix with others so when we are left alone, we can get out and make the most of what ever time we have left before we rejoin those we still love.

    Lots of love ❤

    XxxX

  • The only neurological support we were offered when my husband was diagnosed with CBD in Jan 16 was an appt at the Parkinson's clinic. It had no benefits and when the next appt came around I pulled the plug on it (after contacting the Parkinson's Consultant) as I felt it was a box-ticking exercise. The outcome just wasn't worth the enormous effort we had to make to get to the hospital. We had a mental health nurse supporting us at the time as my husband suffered from panic attacks and she was the one who pointed us in the direction of physios, etc. I think the best thing to do is get as much support from speech therapy, physios, occupational therapy, and so on, as you possibly can and, very definitely, keep in touch with the PSP Association who are able to pass on lots of valuable advice. Good luck.

  • Similar comments to the other replies really, no practical help offered other than physio early on and a Parkinsons nurse, then we are booked for an annual check but it is debateable if that is worth the effort to get there.

    xx

  • So frustrating. I'm sorry you are going through this.

    We were seeing our neurologist every six weeks, same outcome, same tests, finally she was the one who gave us an Rx for home hospice.

  • It's a vicious circle, seeing all the doctors only to have them tell you "this is the natural progression to the disease". Thanks Doc, tell me something I don't already know. I get a hell of a lot more information from talking to you all.

    Rant building up with me too, letting it go for a while tough

    hugs

    Paola

  • Ben see the neurologist next month after seeing nobody for 18months. The only reason I want Ben to see him is for a report to the GP in case it helps with CHC. After this visit sang really see the point of seeing him anymore.

    Kate xxx

  • Totally agree wholeheartedly, ours said its psp , there is no medication I can give you. I went home and googled it. Next visit neurologist asked me what his diagnosis had been on last visit , YES , you read correctly. ! I reminded him and he said "and" . I replied I went home and googled it and on hindsight I think you are right. Wonder what his salary is ????

  • Chocolate fire guard comes to mind. Steve saw his, three times, was due to see him again in a couple of weeks. Didn't do or say anything useful, never once explained PSP to us. Total waste of space and tax payers money, if you ask me. Plus an enormous amount of strain and unnecessary stress.

    Lots of love

    Heady

  • I agree too. So don't stress about this namny857. They are a waste of time and effort. Our Nurse at the Parkinson clinic who also dealt with Psp patients was much more useful. Good luck x

  • Thanks everyone for your feedback, you all have been really helpful and supportive as usual. I will take on board what everyone has advised.

    I phoned the appointments office this morning and they said it would be about 5 months, as 18 other patients in front of us. So that's way better than original 12-14mths.

    W is doing quite well. It was his 67 birthday today so we went out to pizzeria for tea and enjoyed a glass of wine as well.

    Sending you all my love and thanks again. Nanny857xx

  • Nanny

    They all need a kick where it will hurt! He should have been seen when they originally said! My husband had to wait for 11 months to see the Neurologist! At least he saw him?

    However the Ambulance service sent the wrong Ambulance to take him to see a different specialist. Have to say I threatened them with the National Press and TV! They rang the hospital and apologised and he now has an appointment on 16th! Let's hope they get this one right?

    Between us we really could write the definitive guide to how badly PSP patients are treated by health professionals and what to do to sort them out?

    The panel have met to consider my husband's CHC assessment and now want yet more information! Really feel like blowing up! We had a Nursing Home place too but the way things are going he will end up in some hell hole!

    Marie x

  • I hope the CHC approval goes through for you Marie. xx

  • When the Parkinson's nurse came to see us after a request from me, she asked if our hospital visits were of any use and I told her,"no". She said she wasn't supposed to visit homes, but due to our circumstances, she would visit us every six months. I will see if this happens.

    I don't know what PSP will continue to throw at us and neither do the medics. Sometimes, less contact with them can be more effective than hanging about for ages in overcrowded rooms to see an overworked consultant who has a hopeless look in his eyes, because he knows he cannot cure the disease.That's my opinion, anyway. X

  • Hi Robbo1. I hope you have more success with the Parkinson's nurse than we did. After I said we wouldn't be going back to the clinic we were offered home visits. The first visit was cancelled by her and she has never re-appeared.

  • Hi , don't post very often

    , but that's shocking to treat people like that hope you got it sorted.my husband is back home now after spending 6 weeks in hospital, he got urine infection wed before Xmas and then got cardiac arrest when he got to hospital. How are things your end and also how r you coping.x

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