Mr

[allanproctor]

I HAVE written something but it hasn't appeared on posts yet

[easterncedar]

What a geat photo! Lovely horse. Where was this taken?

[easterncedar]

Dear Allan, Perhaps your post is on your profile page? (I looked you up.). You might want to try to repost, to make sure it gets seen.

PSP is often misdiagnosed at first, as you probably know, and just because the brain scan showed areas of damage of a kind not associated with PSP it doesn't rule out PSP. Unfortunately, having one disease doesn't save you from having another as well. Was there any suggestion by your doctor as to the cause of the damage that was seen? Any action taken to address that? Are you seeing a good neurologist?

Welcome to this community, in any case. There is good help to be had here. Best, Easterncedar

[allanproctor in reply to easterncedar]

Sorry missed this box, see reply below.

[allanproctor]

It's a sturdy little horse native to Iceland.They have a peculiar gait called a tolt its almost as though they walk faster and faster without breaking into a canter. It is not comfortable ; like riding a bike without tyres over cobbles. I had not ridden since I was a boy in New Zealand. It was enjoyable despite the tolt.

Good health to you all

Allan

[allanproctor]

Thank you for your welcome and advice. I don't think I do have a good neurologist or one at all. I attended a fall clinic and they sent me for the ct scan. If I do have psp it is early stage, only occasional falls, walking problems,getting up and fumbling with buttons etc.

This seems a nice friendly community.

Allan

[abirke in reply to allanproctor]

I asked the neurologist if my husband had PSP as he did not think it was stroke nor Parkinsons. When he did a downward gaze test, The dr made a sure diagnosis of PSP. To help the Social Services and other govt agencies that could provide us resources, he entitled the diagnosis as "balance disorder"....

When B could not follow the horizontal lines on a band the doctor asked B to visually fixate on while moving the band from above the head to the floor, he was convinced that this was the appropriate diagnosis. So you too might ask them to do a "downward gaze test" If your eyes cannot follow a specific band for a length of time, this could give the doctor some very good insight as to your physical issues. good luck in your further research.

AVB

[allanproctor in reply to abirke]

Dear abirke.

Thank you so much for responding, I think I must get myself a neurologist for a start. I don't seem to have a downward gaze problem so far but have several other ssymptoms; falls,walking, difficulty dressing and some coughing/swallowing etc.

It would be nice to eliminate psp but at least at 81 I have had a decent lifespan .

Thanks again for your guidance. (What a great site this is)

Allan

[abirke in reply to allanproctor]

I am glad you have and have had a wonderful life...It is time for you to tell the little ones what made it My so wonderful! my son just yesterday said he wished he had talked to his grandma more about her life. Sometimes the kids don't think about it. You could have a tell your history party. Each kid has a story and you end it up with a story about your life! Just a thought! have some fun and get ya a neurologist!

AVB

[vlh4444]

Welcome to the site Allan. I hope you can get a confirmed diagnosis soon as it is helpful to know what you are dealing with even if it is not good news. Yes it is a very friendly site and you will get lots of good advice and support here.

My husband did not have very obvious downward gaze problems in the early stages although he did have slow eye movements generally and lots of other typical PSP symptoms. The neurologist was pretty sure of the diagnosis even the first time we saw him (2013). Since then the gaze problems, both down and up, and other eye problems have become much more marked unfortunately.

Do you live in Iceland or were you just on holiday there? If in UK what part?

Very best wishes

Vicki

[allanproctor in reply to vlh4444]

Dear Vicki,

So kind of you to respond and interesting that your husbands eye momovement problem didn't show up initially, as you say it would be nice to know what you are dealing with even though it may be unpleasant.

I was on a cruise to Iceland with a friend who died a few weeks ago of cancer.

I live in St Austell, Cornwall after living on a yacht for over 25 years mostly pottering about on the south coast but also SW Ireland. I sailed mostly alone and live alone. Really miss the lifestyle but am grateful for the creature comforts of this little flat ( the yacht was not a posh modern one)

Thank you for your interest Vicki.

Best wishes to you and your husband

Allan

[vlh4444 in reply to allanproctor]

How lovely to live in Cornwall! We used to live in Devon but moved to Kent a year ago to be nearer to our adult children. We love Cornwall and I have a very close friend who lives at Feock near Truro. We still have family and many friends in the West Country and visit Exmouth as often as we can. We love the sea and the boats in the marina where we often rent a little holiday flat but I'm afraid we only watch others going in and out on them as we have never been sailors!

Although you live alone I hope you have some good support from family or friends.

Best wishes Vicki