Hi can anyone relate to this 4 and a half years ago my husband was diagnosed with parkinsonism but there was always doubts as he deterioted guickly he has been subsequently diagnosed with psp his walking speech balance eye problems swallowing have got worse he suffers from severe fatigue sleepiness and lately is confused at times which is really worrisome what stage are we at can anyone help me my husband is 65 I am so worried

12 Replies

  • Every patients journey through these diseases are slightly different. There are no set roadmarks as to when or what condition is next. The best we as family and caregivers can do is provide safety and comfort.

    I know this doesn't really answer your question but take solace in the fact you are doing the best you can.


  • You really need to make sure you get your travel/l bucket list done if able ,health directive, power of attorney.This site is a amazing amount of information.

    Most important is taking care of yourself because if you get sick who is going to look after your loved one.

    Dee in BC

  • My dad showed symptoms 8 years before diagnosis. There are periods of rapid progression then it seems to stabilise for a couple of weeks. He has good and bad days. Something I think it's important to know is to get your house prepared for all eventualities. The council were going to take 8 months to do the wet room, lift and door ramps so we had to pay for all of this ourselves and my hubby did all the work, as dad simply couldn't wait that long. Talk to everyone - get your neuro nurse, OT, social worker and SLT on board. Our local hospice have been brilliant - so helpful - far better than anyone else. The word 'hospice' may seem scary right now (I was totally opposed to this when first advised) but their ethos is 'living life' and they really do add quality to my dad's right now. The PSP Helpline is fabulous. No one can prepare you for this path - we're finding every single day is a new challenge. Have you got family support - anyone to help you?

  • Hi Chloe

    Just adding to the great replies here.

    PSP is not a linear progression. Often there is a downturn with a slight recovery after a few weeks. Sometimes symptoms seem to abate a little.. Liz's thinking is currently a little clearer than it was six months ago. This is not recovery. My guess is that the brain looses a part with a given function and re-purposes another part to try to take its place. The same as in stroke cases.

    It is an awful illness and we just have to keep riding each wave as it comes.

    It is not at all unusual for someone to be diagnosed with Parkinson's initially. PSP used to be an unusual and little known illness, gradually clinicians are becoming more aware of it.

    Best to you both


  • Great response Kevin. You mentioned about that when the brain loses a part with a given function... it can re-purpose another area to take it's place. There is clinical evidence that this does in fact happen BUT, not in all cases. It's referred to as a walk around, or as I like to call it... a detour. There was a mini series on TV called Redesign My Brain where this subject was aired.

  • Thanks daddyt

  • I can completely emphasise with your hubby,I am now 68 years old when I was 59 i started to lose coordination an was diagnosed with parkinsonism this changed to psp about 3 1/2 years ago. In the meantime I found difficulties in walking ( i quite often have a tumble about 2x per day) and have difficulty speaking and eating . my eyesight is OK at the moment although the neurologist says that I have a downward gaze pathology, I don't notice anything myself. I have noticed a new symptom that is when I eat anything more than a sandwich my nose starts to run it can get quite bad at times I just wonder if this another psp thing ?

  • Definitely. Chris nose runs a lot when eating. It doesn't seem to bother him too much but it bothers me.

  • Folks with psp sometimes develop gustatory rhinitis. There are treatments and strategies. The internet may help a bit so you know how to ask your doctor about it.

  • Yrs

  • Welcome, Chloe.

    Its a tough road but you are not alone - although it often feels so.

    Agree with all that has been said. More and more I feel I need to get on and do what will be needed and not rely on others. Plan ahead. Be ready.

    Hospice is great. Wonderful volunteers. I've just picked Chris up from his daycare and he's been clapping to " Elvis " back from the grave !!

    Love, Jean

  • Chloe,

    Could it be that your husband has Lewy Body Dementia not PSP? Confusion and excessive daytime sleepiness (EDS) are part of LBD. If your husband has LBD, sometimes the Alzheimer's medications help with the confusion and sometimes stimulants help with the EDS.


You may also like...