I only joined your forum yesterday. It’s is nearly 3 years since I first took my husband to the doctors. The initial diagnosis was depression but now after a long journey he has a final diagnosis of PSP. My son and I had had concerns about him for 3-4 years prior to him seeing the doctor, so I am guessing onset must have been at least 6 years ago.
I have spent the last hour or so reading through previous questions and responses. I can’t believe how helpful they have been and I will continue to read more.
Everyday Ian has a ‘muzzy’ head which is usually 7/10. The days that it is higher I can see a marked deterioration. He can’t find a way of explaining what ‘muzzy’ means. Does anyone else suffer with this on a daily basis and could you offer an explanation of what ‘muzzy’ is?
Many thanks.
Julie
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Jubaloo
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Hi! S sorry you have to join this group but it is a great place to learn and get help and support. I am in the US. Where are you? Your hubby seems to be about the same place as mine. I figure we are about 5 years in. As for the muzzy head, my husband has had that for about 5 years. However I just now asked him about it and he says it's gone!!!! He had a hard time describing it too. dizzy, light headed, fuzzy. Mine sits all day nearly with eyes shut, not sleeping all of it. Has a hard time keeping his eyes open. Lots of drool, coughing. hardly talks and hard to make out when he does. He still dresses, showers himself but I don't know for how much longer. Has a u step rollator but coordination is bad, can fall easily when he leaves the rollator. He is still eating regular food although I have to make sure it is cut up small or mashed. He sits with spoon or fork halfway up to mouth for ages before putting it into his mouth so he is opposite to yours, eats slowly. He has the vacant stare and does not read any more. I now have to help clean him up after he has a poo. I left this site for over a year as I was going through a bad time and could not handle all the info on what was to come, but I am handling it all better now. You will find lots of support here. A good place to vent too!!!
Thank you so much for replying. We are in England. Yes it sounds like our husbands are at similar stages.
Ian was struggling too with keeping clean after the toilet so we have recently had a Bio Bidet installed. It’s marvellous as it does a posterior wash plus a blow dry!! I struggle with poo so I am dreading having to deal with it. He sits in front of the tv all day, everyday. His only passion is food!! I guess eventually he won’t be able to eat properly so I let him eat whatever he wants. His eyes are running all the time and he sometimes gulps (excess saliva?) but as yet he doesn’t drool. I’ve had a long time to come to terms with the illness and have read loads but the time has come that I need help and support from others who know what they are talking about!!
Morning, I live in Gloucester city, my daughter who has moved from London to help me does all the cooking and presentation is her strength! I was diagnosed in 2018 and suffer like your husband with constantly running eyes, they are a real pain as they restrict movement and if it wasn’t for my daughter, I don’t know how I would get around. Is your husband being treated by NHS? Chris best wishes to you both
Thank you very much for your reply. Yes he is being treated by the NHS but he hasn’t seen an opthalmologist yet. Would you recommend that he does so? X
His eye are running because he isn’t keeping his eye lids fully closed while sleep. The lower parts of his corneas are drying out. I used an eye ointment at night on Larry. It’s mostly petroleum jelly with a little mineral oil in it. There are various brands on the market. I used an eye gel in the morning. I also put a hot compress on his eyes at night and in the morning to help give him some relief.
I’m in the US and don’t know what the brand names for an eye gel or eye ointment would be in England. For the gel I bought the store brand. It will say eye gel on the packaging. It isn’t really a gel but acts like one to lubricant the eye.
The eye ointment brand was by Systane. Maybe it’s available in England. It’s a very small tube. I was told to put an eighth inch in each eye by pulling the lower lid out and squeezing gently on the tube. I used it at night as it makes the vision blurry.
Welcome to the site. I see you've found the search feature for old posts, good. Feel free to ask any questions you have, you'll get a honest answer. I've never heard the term muzzy but I think Daffoldil48 probably summed it up pretty well.
For several years my husband told doctors that he didn’t feel right and the only way he could describe how he felt was to say he felt foggy ... he hasn’t said this as the illness has progressed and taken over his life . Maybe this is the same feeling your husband describes as muzzy. A sense of fogginess....
My Mum used to complain of muzzy head and feeling dizzy was the closest she could get. Thought at the time it was blood pressure problem but it wasn't & now realise it was an early PSP sympton. She also had eyesight problems (due to PSP) - intermittent double vision & I don't think that helped how her head felt.
Mum's eyes also used to run and looked red & sore, we saw several opthalmolgists before being referred to a corneal specialist who said the tear film had been disrupted so it was like blinking over an emery board and the eyes were watering to try & compensate. She was given a course of antibiotics, Hyloforte eye drops 4 times a day, Clinitas eye gel twice a day & Xalin night ointment plus using a warm moist eye bag for 10 mins a day, followed by gentle massage of the eye lid & bathing. This really helped & her eyes were alot more comfortable. Something to do with the oils in the eyelids that form part of the tear film becoming too solid so not being exuded and spread over the eye surface. The oil then built up in the eye lids & became infected, all the time the tear ducts over produced tears to try and lubricate the eye. I felt awful that Mum had put up with this for years and it was only in the last year of her life we actually found something that helped.
Try not to think about what you may or may not be able to deal with too much. I certainly never thought of myself as carer material, had never had kids, never "cleared up" after anyone, then when I had to do it, found it wasn't that bad after all and if approached with a sense of humour, was better for everyone. You do get to a stage where the fact that someone has had a pooh is almost a cause for celebration as constipation becomes a constant battle.
Also consider getting carers in to help sooner rather than later. The carers Mum had were fabulous and kept us both sane. Mum was able to stay at home, living on her own in her sheltered living apartment until the end.
Have you looked on the PSPA website to see if there is a support group near you?
Glad you have joined this forum, it has been a life saver to me. To talk to people who have experience of the condition & can relate to what you say. I hope you find it as helpful.
I am already finding it a huge help despite only just joining. You realise that there is support out there from people who have experience of the subject. I cannot relate to people who are in a supportive role when they don’t know me, my husband or the illness!
I am pleased to hear that your mum was able to stay in her own home to the end. What a fabulous achievement bless her.
I am going to ask for Ian to be referred to opthalmology and seek their advice.
There is a local care group but I don’t feel able to join just yet. Perhaps in time to come I may.
My husband also suffers with watery eyes he has regular botox into his tear ducks and this works really well this is done buy the ophthalmology department
When I first diagnosed I called 'muzzy head' brain zaps. They're like a low voltage shock - no pain, similar to dizzieness... but not quite. Sometimes there's a head pressure, but not a headache. Being a veteran of this beastly thing they call PSP, you can't help but learn a few things along the way. I now know this feeling as low blood pressure - orthostatic-hypotension. Like any other symptom of PSP, each of us affected will experience it differently than the other, and some... not at all.
Hi Tim thank you so much for your reply. I guess the muzzy head is hard to put a description too! Ian cannot put it into words so I’m left to guess how he must feel. It is a permanent problem for him sadly.
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