Sending everyone a warm Good Morning from NY, USA.
I saw my ex on video yesterday- I’m still waiting for COVID vaccination so I can see him in person - I saw his eyes shut (and his aide told me they only open a sliver).
Has anyone else seen this? Does this represent the next stage?
I’m so confused and heartbroken.
None of my friends want to hear my sadness anymore- to them, he’s an ex that didn’t marry me after 5 years together. To me, he’s a Man I loved and I know he’s dying.
My heart goes out to you. PSP does affect the eyes, as to whether this is an advancement of the disease,? Probably, but not the end game. If you love the man, you love him, that’s all there is to it. Come on here and express your feelings, we understand.
Sending big hug and much love
Lots of love
Anne
Thanking you so much for your kind words.
My own eye lids were said to be drooping according to my Neurologist Blepharospasm). He saw the difference grow between visits. My eyelids sometimes remain closed for a few seconds with a blink or a yawn. I occasionally have to pry them open. Mostly it's one eyelid at a time ( usually the left), but occasionally it is both. It's one reason I don't drive anymore.
His right eye started dropping a few weeks back- now it’s both eyes are slits.
I don’t know how to keep my composure- yes, he’s my ex but I loved him when we parted (for reasons on both our parts). Everyone says “not your problem” - I think that’s a mean thing to say.
I can’t turn my back on anyone hurting.
God bless this site- it’s my only avenue to say what I need to say without judgement.
Ex,
The inability to open the eyes is called Apraxia of the Eye Lids. My wife got this symptom very early in the onset of this disease. About 6 years ago. In fact, she was diagnosed with this around the time she was initially diagnosed with Parkinson's Disease. She has been getting quarterly Botox shots to address this issue for about five years now. These helped a great deal for several years, but are definitely losing their efficacy at this time.
BTW, this is one of the most common 'features' of this lovely little disease.
You will hear this a lot around here: No one has the same progression as anyone else. Some people will be unable to walk, even with a walker, 2 years into onset. Others will be walking with no aid or just a cane days or weeks before they pass.
Some will have double vision most of the last few years of their lives, others will never experience that at all. Some will suffer from dementia, others will never get it at all. But slowly (usually) and inexorably, excess Tau will be attacking and killing off neurons in the Substantia Nigra: a tiny section of the brain that controls the autonomic nervous system, which is the control system in our brain that acts unconsciously, regulating bodily functions such as the heart rate, digestion, respiratory rate, pupillary response, the opening and closing of the epiglottis, urination, and blinking.
And, while all patients suffer different progressions, symptoms, etc. most folks pass 4 to 7 years after their diagnosis (not onset...diagnosis) .
These are just averages. Some live much longer, some the opposite. It can depend on what strain of PSP a person gets, and there are 5 or 6 strains.
The people on here are just great when it comes to helping newcomers get educated, making recommendations on assistance from medical providers, tips on taking care of our patients (most of us are primary care givers to our loved ones). I have learned so much from folks on here. And they are here when I need to rant as well.
Good luck to you and your Ex as he makes his way through this Labyrinth.
Keep asking questions, and scream when you need to.
Warmly,
Dick
Oh I thank God for this site. I cry everyday alone and when I have opened up to people they tell me “its not my problem” and move on he’s your ex not your husband.
But I love him.
I’m not weak. 23 years ago I lost my fiancé to a plane crash- 20 years ago I lost many friends to 9/11.
But this disease is killing my ex an inch at a time and my heart breaks at each inch.
God bless you nice people on this site. For today, you made me feel less alone. The family wants no part of me. They look at me as yesterday’s girlfriend for my ex And nothing more.
Welcome, Ex!This site was my lifeline, too, in a frantic time when nothing made sense of my hubby's condition - which I think was CBD.
This site helped me understand that the things that were happening to hubby before my eyes were part of a disease, and not a blip on his meds or my BP machine!
The rest of the family were concerned, but once they visited, they went back to their life and left me to fight the battles - with ordinary medical staff who did not understand the fast deterioration any more than I did.
I had to insist on getting a neurologist, who came even after being discouraged by ward doctor in charge! He understood, and showed me hubby's brain scan and took time to write down his conclusions - that it was NOT Parkinsons!
This site also explained many changes in my hubby that seemed unrelated to everything else that was happening. The effects of what I now believe were the results of damage to the area of the brain controlling body temperature and blood pressure, and apparent strokes in the brain, where xrays showed no evidence.
Because of the support and knowledge I received here, I am still here, some years after hubby has gone!
When I joined there was next to nothing about CBD on the Internet, and this site had the most info that seemed to relate to symptoms my hubby was experiencing.
I hope it helps you through this journey, Ex, and afterwards. We understand the grief too, during, and after!
I made many friends here, some of whom are no longer here and/or cannot contribute any more. I think of you often!
Hugs to you all!
Jen XXX
I’m so sorry for you and your ex. My mother is in last stages of PSP.
One of her early symptoms was double vision for which all treatments didn’t work. Now that left eye has been closed shut for months.
Feel free to reach out anytime.
PS: Find new friends.😘
Dear LMSimon
I’m sorry to hear your mother is in her last stage. Has been a long journey for her?
My ex has had the double vision for months.
His eyes shutting now take away so much more of the little independence of reading and watching TV.
He’s such a positive person (sometimes other worldly positive). He had a neck-Fushion surgery in 2017 - surgeon cut his vocal cord- he’s hasn’t been able to speak clearly since surgery. What hurt the most is the surgeon was his friend- my ex admired him- and when I presented facts that the cord was cut at surgery- the surgeon walked out of the room with no response and my ex (TO THIS DAY) tells me - “don’t hate anyone”.
I do hate the surgeon for his actions at post op.
I wish your mom to have comfort during her last stage. My heart bleeds for the people effected And the caregivers who love them.
Why does the process of this disease take to be so long and horrific 🤦🏽♀️
Sending love and hugs to you.....and your beautiful mother❤️
PS
Yes, as soon as COVID is a memory...”finding new friends is on my list of things to do”. The insensitivity some have show is something I will never understand.
Yes, my husband often has his eyes nearly shut, just open a sliver. Distressing to me and often to the PT, OT, etc
Hi ConcernedEx!These are our experiences in this regard:
• Dry eyes is a classic problem: drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative. Also warm moist compresses help. Wash your hands beforehand and clean the eyelids with not irritating baby shampoo. and after use a gauze sterilized by each eye, moistened in physiological serum. It can be also an allergic problem.
To improve the lubrication of the eye we have tested "Hycosan Extra" (Sodium hyaluronate 0.2%) (Aquoral is similar) by applying it 3 times a day. It bothers a little in the first seconds after applying. Our experience has been positive and we have noticed that the internal redness of the eyelids has diminished.
Consulting an ophthalmologist who has experience in PSP is recommended.
• Clarity produces "photophobia" and irritation of the internal eyelids. She wears sunglasses frequently applied artificial tear drops or saline serum. Sometimes suffers headaches and eyes pain on afternoons. We suspect that the origin is photophobia. We usually neutralize them with paracetamol.
• In the morning the eyelids may appear "stuck". To avoid it put eye ointment in at night to help lubricant the eyes. It is also possible that the eye may not stay closed all night and it dries the corneas. The ointment is 97% petroleum jelly and 3% mineral oil.
Hug and luck.
Luis
Involuntary eye closing
Eyes
Eyes 
The end is close
Eye problems with PSP
