My Husband has psp and I read to him many of the post on this site. We enjoy the questions people have about symptoms the most. Many doctors today are not well versed in psp knowledge so when we read someone who is experiencing an odd symptom we can see if others have had the same symptom. This is called educating ourselves. If no one reports that same symptom then perhaps it is something outside the psp curse, but if one or two others are noticing that same odd symptom, perhaps it maybe related to psp. Everyone understands that psp is different in each patient, but discussing odd symptoms is certainly helpful. I hope followers of this site do discuss symptoms openly. Don't be discouraged. Who knows, we may uncover something to which the medical scholars had no clue. A few years ago the scholars did not know that people with psp tend to get dents on the right side of their cars because they have difficulties maintaining their position in a driving lane because of fixation problems (early on in psp). So if someone asks if people with psp ever get dents on their right side of their car? - it is a fair question. Maybe we will learn something.
Note- read about Richard Rainwater psp and driving
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gail66
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We also find the site helpful. It is good to know you are not alone. My husband has had PSP at least 8 years now and for him things change very slowly. Symptoms come and go and some things he has never had and some things he is so strong at have remained OK. He couldn't walk for awhile and then he is up and walking again. He used to have bad falls but those have also stopped. I keep notes, a journal, and it is interesting to look back and see the ups and downs. I find the doctors pretty much useless. This site has helped more for free than all the money we've spent on doctor's visits.
My husband just passed after about a 9 yr struggle / psp The symptom s are so subtle in the beginning it's hard too remember when it started Only the last 3/4months were a nite mare but with lots of help we let him home rite till his passing
So sorry about your husband Kolton. It's good you managed to nurse him at home until he left you and I hope it is a comfort to know you did your very best for him and he is now free from PSP?
I hope you can soon rebuild your life and find happiness.
My heartfelt condolences - particularly since my wife, Roisin, died ten weeks ago so I am able to share some of what you are feeling now. I remain on this site partly to try to understand more about PSP. Like you I find it hard to remember when it all started and I too am grateful that, except for the last week, Roisin was at home and I was at her side when she died. You and your husband are both free of it now. I hope your scars of your experience heal quickly so that you may begin a new fulfilling chapter in your life.
My condolences and thoughts are with you Kolton. Your husband is now at peace and, in time, you will find the strength to move forward with your own life.
Life is not easy but after a run with this terrible illness the strength you have to muster will indeed get you through,sorry for your loss but my hopes are that your husband,s soul is FREE of PSP ,Best Regards,Rollie
To All I thank yu so much for yer condolences I am REALY ok I have to say this disease takes their Personality so the PERSON. Yu loved isn't REALY there anymore But still having him in his own bed in our home was something special I am so glad because I was so tuned into him after many yrs together I could just tell what a little movement even meant It was a long haul I am here I will stay on the site for a while Contact me anytime Love to all of yu Great bunch of people Thank yu
My husband had to give up driving very early on. In fact it was his driving that finally alerted me to the fact that something was wrong. He would drive so slowly and when asked why - he thought the car in front was miles nearer than it was, he could not and still can't judge distances, so I am now the only driver as well as carer.
I just have to tell yu that was exactly one of my husbands fort symptoms toooo The slowness. And we did a lot of highway driving I started noticing he was having a hard time staying between the yellow line and shoulder His tendency was to be tooo close to the centre line. Scared me Silly. More people need to know about this terrible Horrific disease Let me no if yu agree My best wishes to all
I agree there needs to be more education within the medical profession on PSP. Saw my GP today - she has read lots of information on the internet, ordered written docs that are available to her as a professional. She copied information on the condition to pass to all the other GP's in the practice at their weekly update meeting and she has talked them through what is happening with my husband, their only PSP sufferer, as she says its important to her to know that, if she is not avail, I can still get the right and proper help from any of the other docs and be comfortable and assured they understand fully.
I agree there needs to be more education within the medical profession on PSP. Saw my GP today - she has read lots of information on the internet, ordered written docs that are available to her as a professional. She copied information on the condition to pass to all the other GP's in the practice at their weekly update meeting and she has talked them through what is happening with my husband, their only PSP sufferer, as she says its important to her to know that, if she is not avail, I can still get the right and proper help from any of the other docs and be comfortable and assured they understand fully.
Yu are so rite even going to the Neurologist s could not actually diagnos my husband 3 yrs ago They said whatever it was their was no cure. So my husband would not go back He said and I quote. "What for "" I kinda had to agree but it left us in limbo !!! His doc of 30 yrs said its Parkinson's so all the docs need to be more informed About symptoms. They are crucial. And I don't know about yr spouse but mine didn't want to face up to it So doc payed little attention to what I had to say made me feel like I was making things up As if I would like to tell my story "" it's a long. ""one "" to somebody but I have no idea who would write it But the information needs to get out to the. Medical community. PRONTO. Thank yu for sharing. How many yrs are yu into PSP?????? If yu don't mind me asking !!!!!!! Take care MARG
We are only 18 months into PSP if I go from the time I noticed his driving, I can't think of noticing any of the symptons prior to that
Hi Gail66. One of the symptoms mum has is lack of pain. When mum was still mobile,and could communicate, she had several nasty falls, leading to A&E for stitches (one head wound needes over 30 stitches), but mum never had any pain or even a headache!! She also had a blocked and twisted bowel, which we didn't know about until she was admitted to hospital with pneumonia, again because she had no pain. Yet take blood, or remove a plaster and she would wince. I have only come across one other person with PSP who has this symptom.
Another symptom is no raised temperature, even when seriously ill. We nearly lost mum last year, due to pneumonia and several infections, but in all that time she only ever registered a temperature once for one day. She did however show all the other symptoms - hot to the touch, clammy and sweating, raised blood count etc.
I hope the posts about symptoms continue to help you and your husband.
My husbands internal thermometer is also defective only in his case he seems to easily be way to hot or way to cold- difficult to get it just right. Also he always sits with his feet angled so that the sole is not touching the ground only the side of his feet and he always puts pressure on the side of his foot as if he is intentionally twisting his ankle.
I think my husband has pain but doesn't locate it in his body. Its like my dogs, they have pain but think it is in the environment. They can't locate the pain and just get subdued. He stopped driving, his eyesight is terrible, his bad falls stopped, his walking improved, he is 100% dependent and cannot understand gestures (pointing) or language and cannot word find. This is about his 8th year with PSP. He remember me but that is about it for memory. He is restless and pacing but the only medication he takes now is for seizures which was the first thing that forced a diagnosis. He needs 24 hrs supervision and we have a wonderful man who lives with us to help me.
Curious this. My wife has horrendous "night sweats" usually early in the morning. She still uses HRT patches, which were prescribed years ago. Our neurologist felt it would be better if she carried on with these. Don't upset the system too much. I've always wondered wether this was just post menopausal. Maybe the sweats are associated with PSP in some way?
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Query about symptom of neck position in PSP!
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