PSP onselt after a stroke

[ahaigwood3]

I am looking for other PSP patients that were diagnosed after a stroke.

My father in law- 72 years old- was 100% independent, did everything on his own. Baby sat my daughter after school, drank beer, drove around, managed all bill, forgot nothing. Not heath concerns except for a weak heart.

In February of this year he suffered an extremely rare stroke of this Thalmus .. he was in ICU and non responsive for about 8 days, Doctors said that people with this kind of stroke just dot wake up.

Well he beat the odds and woke up. After staying in the hospital another month his condition worsened. We wasn't able to eat, not walk- gait was off, incontinent, didn't stay awake more than a dew hours at a time, vision was off- couldn't look down. No one knew what was going on- they diagnosed him with Dementia and send him to rehab for his stroke.

Now at a new hospital they did another CT scan because he was non responding and just wanting to sleep. That is when they saw very minimal stroke damaged and was diagnosed with the PSP.

From there is has been a crazy roller coaster. He is not able to walk or stand without assistance, he cant use a walker, cant see down, has a lot of trouble eating due to vision problem, tired all the time, anger outburst. My self (28) and his son (34) are his caretakers, he lives in our home now. I take him to adult day care. We have good days but we sure have a lot of bad ones. He has to have 24/7 care so when we are not able to or even need a break we hire a caretaker.

Has anyone else experienced sudden onset like this?

[abirke]

Not exactly. B has not had a stroke. However I am writing to suggest a mirror at the dinner table which reflects his food so that he can see it. It has done wonders for B. The hardest part is that moving the utensil away from you, it is moving closer to the mirror, hence everything is backward which is difficult to say the least even w/out a disorder...but your dad might find that seeing his food is a welcome sight....and I sometimes help B find the food in the mirror...You might think of this for your dad ....Good luck

AVB

[Heady]

Hi, my husband too, suffered from a stroke, before being diagnosed with PSP.

He had a silent stroke, he woke up one morning, a totally different person. Barely spoke, very apathic, seemed to be away with the fairies most of the time. Writing went, could only write in a circle. Would not shave, or do anything. Choking on food. Slowly improved, every time I asked what was wrong, he said he was fine. Sent him to a couple of different doctors, but S just told them I was going mental! Of course they believed him! Finally, took him to see another doctor, he sent him for a MRI scan and they found the stroke. After that, S didn't really recover, seemed to be getting slower each day, blamed his back, had an operation on that. Then it was his knees, went privately for a knee replacement. During rehab for his knee, I started to notice that he didn't know how to get up from a chair and various other things. Just thought it was stroke damage. Of course the falling had started by then. Again, bad knee blamed. Finally, after a mountain walk, which should have taken an hour, we were on the hill for 6 hours. He fell so many times coming down and hurt his arm very badly. Thought he had had another stroke. The doctor took one look at him and said Parkingsons, went to a consultant, he diagnosed PSP straight away, although we only found out by reading a copy of the letter he sent to our GP!

Now with the benefit of hindsight, I know S has had PSP for a good 20 years. His driving was going down hill for years. I clearly remember an incident 20years ago, that had to be because his spacial awareness was going. Oh the rows we had over those years, me yelling that he was far to close to the edge of the road, or else going down the middle and nearly having head on crashes! The frustration that he suffered, before the stroke apathy, again more rows. I don't know how we survived. Felt like killing him many times, or at least visiting a friendly solicitor!

Now a couple of years since diagnoses, four years from the stroke, he is still upright, just, uses a walker now. Struggles to communicate, chokes on liquids occasionally, eye sight not bad. Has continent problems. Basically, just sits in a chair and watches the news all day long. This is a man that ran his own successful business, never sat still, (unless in a pub!) but only after he had worn himself out, running, mountain walking, rock climbing. Huge gardener. Again thanks to the apathy, doesn't even care! it's heartbreaking and there is NOTHING I can do!!!

I am sure that if you look carefully in to the past, you will find signs of PSP. I am convinced that it's something you are born with. Like Alzheimer's, all these very slow brain diseases are DEFINETLY not old people's illnesses!!! That's just when the damage is so great, it starts to show, I.e. When the person is older!

All we can do, is get through today, tomorrow will brings its own problems, but today's challenges have to be dealt with first!

Lots of love

Heady

[abirke in reply to Heady]

that's interesting that you think it a life long disease/disorder. Bruce also displayed such things as apathy in that he was not a go getter. Nice guy but would never be a politician or a sales man. More into doin his own thing refurbishing houses. He was athletic in that he would do solo excersize. Lift wts., swim, hike, ski, no team sports likes US football. Very intelligent

became a Christian when all of his friends were becoming alkies. He did teach and lead singing now he doesn't even want to go to church.....He did play in a band .....very close to his kids. though if they don't come around ,oh well....He has no continence problems his would be visual ability. and stability, there's not a body part that hasn't got some sort of battle wound.

Is alzheimers a life long thing...would that not be found genetically or chromosomaly infact isn't PSP something on the 17th chromosome? uhg. I need to reread it all!

One thing is for sure one day at a time, one day at a time

[Nancy_Henderson in reply to Heady]

My father had a subdural hematoma 9 months before being diagnosed with CBD. I agree with having it many years before diagnosis. He is a brilliant man & insisted for 7 years he had Parkinson's. Now we know it's a parkinsonism. Praying for a cure before it hits the next generation. I really suspect there will be more incidences of hereditary as we progress through research & longer life spans.

[Tz2388]

Interesting. Tal hasn't had a stroke that we know of. However, one of the first Neuro docs suggested it might involve a stroke because Tal doesn't know right from left, which involves a different part of the brain. No MRI possible because of Pacemaker.