Could my father's loss of his sense of smell (and therefore taste) have been connected with onset of PSP?

[MoragR]

Has anyone else lost their sense of smell and taste in the early stages? Just wondering - but it could be totally unrelated as his skin condition, Bullous Pemphigoid, seems to be.

[Hidden]

It has been shown by medical researchers that some PSP sufferers have a poor sense of smell (hyposmia) compared with control subjects but not as bad as some Parkinson's sufferers.

[SharonAB]

Dear MoragR,

If you don't laugh you cry... My reply is a bit left field but here goes....

I could not think of what it was like in the early stages so I asked our 10 year the question to give me a reminder - She automatically said 'No Dadda could not smell anything - remember the pop -offs I did and he didn't smell any of them!" (and he truly didn't and should of!)

We also had a problem with some neighbours somewhere doing some sort of chemical work. Anyway it got to a point that local police got involved and jumped the fence to check. And all along John didn't or couldn't smell anything. Mind you in general he also became 'rather switched off' and unperturbed to all the events surrounding us, unless he felt it was directly affecting him.

We also had a lightning strike which caused some burning - a slow electrical fire in the roof of our house for a week - and he didn't smell anything or particularly care about that either. I pretty much lost the plot looking for it! (yes, should write a novel about that one...)

Which lead me to recall his taste buds - John did start to use very large amounts of salt on food (he even went to lengths to buy his own salt shaker just for him to use). One never went on the table before then. And I now recall how he ate foods that were too hot (heat hot) abd did not flinch.

With your father's skin conditon - I understand it is some sort of auto-immune condition so I am left wondering if that will change with the onset of PSP (perhaps even improve?). The reason I wonder is because John used to have rather dry skin but with the onset of PSP his body would overheat, and his skin on his face and scalp would get oily overnight and then flake like a heavy dandruff especially around his nose and eyes. A gentle exfoliant with sorbolene or aqueous cream and a flannel and a couple of times a day did wonders, along with a little anti-dandruff shampoo (yes on the face). This seemed to have stabilised now.

Regards,

Alana - Western Australia

[MoragR in reply to SharonAB]

I'm glad that John's skin is settled now. My dad's 88 now and his skin is really thin and fragile, partly as a result of the skin condition but a lot as a result of taking low dose steroids, on and off for years and now all the time, to stop the awful blistering. He is really well cared for in a care home just 5 minutes away from me and as I said in answer to daughterno1 below he has a really high pain threshold and doesn't remember his difficulties for long - we have to hold on to these as plusses!

Very best wishes to you,

Morag

[Hidden]

It would figure really as mum lost her sense of pain. She had always been tough but to break your nose as well as all the massive cracks on the head she had and not feel pain was more than being tough! I thought it was almost as if the body was preparing her for the knocks and blows but the worrying thing was of course that there was nothing making her more cautious or wanting to be helped to save herself the injuries.

As the sense of smell is essential to appetite it will take the edge off his hunger so that when swallowing is difficult it won't be nearly as worrying to him as it will be to you.The progressive nerve damage is obviously at the bottom of these losses as well as the muscular issues.

Mum also had skin issues with the onset of her PSP and her skin went through several phases. At one point she even developed Shingles after some heat damage to her forehead in the salon hairdryer (as again she was not aware of the heat causing her pain and sat there cooking!) The Shingles began as a very large spot exactly where she had got singed and quickly developed a rash in the immediate area.. (Obviously you have to have had Chickenpox previously for Shingles to develop at all) My sister pooh poohed the idea that it was a direct result but I researched it you actually can develop Shingles in an area damaged by heat.So be aware folks! Luckily Mum's strange pain threshold meant she had very little pain from the Shingles despite it travelling over her eye area.

Take care

[MoragR in reply to Hidden]

You're right about the high pain threshold - that combined with only remembering for a very short while does reduce his suffering. It's amazing how he quickly forgets that he has fallen and isn't in pain from the skin damage that is caused by each fall as his skin is so fragile. Hey-ho!

Morag

[JudyJ]

I literally had no sense of smell for 5 years prior to being diagnosed a year ago, tho we've traced the onset of PSP to at least 2010.

As to taste, the same thing, just not as severe as loss of smell. The biggest problem for me in regards to loss of taste, means loss of appetite; perhaps they are 2 different things, but it's resulted in very poor nutrition on my part. The logical part of me always tells me to "eat it because your body needs it", but so far my loss of appetite trumps my logic, and my self-discipline has disappeared. Hard to explain unless you're experiencing it yourself.

I have an appointment with my Neuro at the end of the month and I will ask him these questions as I've been curious myself about this over the past year, but during our appointments, there always seem to be more pressing things to talk about.

I'll let you know his thoughts about this.

Judy

[MoragR]

Thank you Judy. Losing the sense of taste is a difficult blow, it made my dad feel very low.

I heard the athlete James Cracknell on the radio this week describing how a variety of textures in his food was important to him now that he cannot taste - eg he now loves cucumber for the texture though he didn't use to eat it and eats a variety of types of crispbreads instead of bread which is revolting to him now. He also adds hot pepper sauce to dishes as he then gets a tingle at least.

Very best wishes to you,

Morag

[k80y]

My 81yr old Aunt also has PSP, her first unexpected backward fall happened twenty years ago, she is also on low dose steroid to prevent Bullous Pemphigoid from flaring up since she suffered a three month spell of hospitalisation with it. This is an interesting coincidence as both PSP and BP are fairly rare illnesses in comparison.

I have noticed an increase in appetite- due to the steroids I assumed, which has resulted in a rapid weight gain.

The blisters are so distressing, thankfully she enjoys her food as her mobility is now almost restricted to hand to mouth. But she still applies her red lipstick daily, despite her eyelids being permanently lowered, the wonderful thing is she never complains or grumbles. She is beautiful lady inside and out.

Hope your dad is doing okay too, it sounds like he is loved dearly anyhow and that's the best medicine, take care and God bless.

Kathleen

[loupur06]

hello. my mother was diagnosed about 3 years ago. she lost her sense of smell decades ago and always attributed it to some hormonal imbalance during pregnancy. she is 74 now. regards, louise

[jillannf6]

HI I LOS TMY SENSE FO SMELL AND TASTE DECADES AGO AND NOW HAV EPSP- A LINK OR WHAT>?

LOL jiLL#