My husband recently has started to have problems with his head retracting backwards and his eyes gazing upwards along with periods of his eyelids being closed. The neurologist has suggested botox for his eyelids but my husband has refused. Does anyone know at what stage of the illness does neck retraction and upward gazing occur, also what treatment have people experienced for this problem?
Wishing you all a Happy New Year with plenty of blogging.
Peter3.
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i i would like botox for my eyes but when i saw the consultant in august he said they were nto bad enough yet
i cannot wear my contacat lenses any more as imy eyees close b4 i can get them in
i cannot see as well with my specs
lol JIll
Hi Jill,
Sorry to hear your consultant won't let you have botox for your eyelids.
My husband has his eyes closed for quite long periods of time. Sometimes it's difficult to know if he is asleep or not and I don't want to wake him up to find out if was a asleep!!
I enjoy seeing your blogs Jill.
I wish you well with your health issue as 2013 rapidly approaches.
Take care
Peter3.
Mum closes her eyes a lot but I have found that in a shaded room or when wearing sunglasses she is not so bad-her eyes are extra light sensitive. So if she is in full light she closes them and then actually falls asleep, bless her! She often opens one eye and answers people just when they presume she has gone to sleep.Mum used to lean back all the time but now her head leans over to the right all the time when she is tired to the point that her face has gone baggy on that side and she retains food and drink in that side if we are not vigilant.Sometimes these things bother us more than it does them.
Hi Daughterno1,
Thanks for your comment, the issue of light could be relevant to my husband. He tends to sit facing the window and then shuts his eyes. It's the neck retraction that causes him the greatest problem. He quite often says to me if we are out, "push my head down". He also has the same problem as your Mum of food getting lodged in his cheeks, like you I have to be vigilant otherwise he starts choking as he puts more and more food into his mouth without swallowing.
Best wishes.
Peter3.
I'm not sure if the neck retraction comes in all PSP cases. If anyone knows please inform us. My wife doesn't have it yet but her progress is slow so far, thank God. The neurologist detects some stiffness in the neck when turning it side to side but it's minor at this time. Hope someone can respond if neck retraction comes in all PSP cases.
Hi, I'm Judy from W. St. Paul, MN. I was diagnosed w/PSP during August of this year; I just turned 54 in July. I was told I'm in the early stages.
I started having eye problems the summer of 2010 but didn't see an eye doctor til the spring of 2011. My eyes were red & very painful. For months, I thought it was due to allergies, pet dander, dust, a dry heat over many months of an especially bad winter.
To my surprise, I was told they were completely dried out to the corneas which had several pock marks in them, as well as cataracts in both eyes. Had lots of bloodwork done to determine the cause of all this but everything came back normal. Had cataract surgery on both eyes June, 2011.
My neuro explained to me that eye problems/eye-tracking problems ( I have the tracking problems) are the earliest signs of Parkinson's or a Parkinson's + disorder. It's the eye-tracking problems that cause the backward tilt of the head.
I was looking at pictures this fall from the present back a few years, and noticed that more recent pics of me show my face with my chin-up/head back. Asked my neuro about it; said it's a common position of the head/neck w/PSP.
About a month ago, I started experiencing severe pain at the base of my skull, which scared me a lot. Back to my nuero I went. It seems I have a pinched nerve at the top of my cervical column from the head-tilted-back position. He prescribed a muscle relaxer which has helped a lot. If/when that stops working, I'm to get a steroid injection; ick
Tho I'm in the early stages, the eye-tracking/head-tilted-back, is now my 'normal'; hope this helps.
Hi JudyJ,
Yes your comments are helpful thank you. So common with psp the symptoms don't occur in any particular order. My husband was diagnosed with psp in May 2011, at the time the neurologist said he was looking for typical changes in eye movement but could not see them. However my husband's personality had changed and he was having numerous falls everyday. He now is just about able to walk around the house with support and requires help with all activities.
Best wishes
Peter3.
We used a flight pillow you know the ones that sit around your neck that helped mum keep her head from retracting too far back also a V pillow in bed with a further pillow in behind the V helped as well. I do think that in some cases the tilting of the head backwards in a part of the PSP that was really when the neurologist mentioned it to us with mum. Bright lights were a complete no go area we dimmed her bedroom lights right down to a min to make it easier though she still spent an awful lot of the time with her eyes closed.
peter3 I'M HAVING TROUBLE WITH MY EYES STAYING OPEN. I'LL NEVER USE BOTOX , IT'S TOO DANGEROUS ,YES & THEY BURN AND WATER. I'VE HAD THOROUGH EXAMS AND X RAYS BY MY EYE SPECIALIST & HE SAYS THE EYES HAVE SOME PROBLEMS THAT ARE RELATED TO MY LONG TERM DIABETES ] 63 YRS } WHICH I HAVE IN EXCELLENT CONTROL. I GUESS THE EYE PROBLEM IS PART OF PSP I HAVE EXTRA SALIVATION BUT NEVER WILL ITAKEY MORE MEDICATION. I TAKE TOO MUCH & THEY ALL CREATE MORE REACTOIONS TO THE OTHERS. HOPE O HELPED A LITTLE YOR FRIEND GENA
Do other PSP sufferers with vertical gaze palsy have chronic dizziness - just trying to figure out if these two symptoms are connected.
Eyes
neck pain
neck pain
Eye partially closed (sometimes)
