New PSP Diagnosis

Hi, After 3 years living with a PD diagnosis, my husband's new dr believes he has PSP. I have read some info about this, but wonder how a definite diagnosis could be made. It seems from what I read that PSP is worse than PD. I pray the dr is wrong, but we would like to know for sure. He has never fallen backwards, but has very poor balance and falls -almost in slow motion-forwards often. Very stooped, slurred speech, sudden downward spiral this past summer. He has Botox for bladder issues, so has to catherize himself each time he needs to empty his bladder. Has an awful issue with constipation. Takes Sinemet CR, and uses a Neupro patch for stiffness -especially in his neck. Advice, anyone? He doesn't want to read anything or hear anything about what could be coming. Says he will find out when "it" gets here. Should I ask the dr for an MRI? Will that give a definite diagnosis?

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  • Hi Babowen and is welcome the right thing to say? However it's a welcome to a very unfortunate and tragic new world. Let me preface to say- There'll be others here who can answer you better than me but I'll tell you what I can. I believe you're right it about the MRI. Is that or the PT scan, not sure but whichever it is my Dad with PSP can't have because of a pacemaker. You're right to hope the doctor is wrong because there are more symptoms with the evil PSP than PD. I agree with your husband also, because nobody has ALL the symptoms. If I were him, if he can resist finding out all the possibilities, I'd let him because there'll be nothing to stop it from happening so why have all the dread, fear and/or worry that would come with knowing too much, things that may be unnecessary to even know. You may be better off to learn about PSP (if that's what it is,) but keep from sharing too much about it with your husband. However, I feel for you because when you first start learning of all the possible horrible symptoms it's devastating!! I shed many a tear and had to walk away from reading about it many times over the course of several months before I could read right much without breaking down into an emotional mess. AND AFTER ALL... MAYBE THE DIAGNOSIS IS WRONG. There is a test (the MRI or PT scan) that will tell for SURE if he has PSP. And one symptom I'm pretty sure all sufferers experience is the falling, HARD falling, not like you or me who would reach out and catch ourselves but like a tree falling and hitting hard. These falls are more dangerous because they're not normal falls. BUT see, I thought all PSP sufferers were more likely to fall BACKWARDS as you said. SO, maybe just maybe it's not PSP but then too, maybe it is. I'll say a prayer for you and him both. Please feel free to post here on this forum all you want. There are many very kind and helpful people here, some of whom are the sufferers themselves but most of us are caretakers. Try to be strong and also, remember to TRY to find JOY in each day, for your husband, and it'll help you too though. Laugh all you can and do anything with him he's still able to do. Even small things like going OUTDOORS. Let us know how it's going.

  • Thank you so much for your kind words! Prayers sustain me every single day!

  • My husband had a DAT scan also MRI, but it was the DAT scan that really confirms it along with symptoms etc, I think many people here say the falls are the first symptoms they noticed, but that was not the case with F, he had a tendency to walk leaning forwards, I used to think how's he going to fall backwards, but it happens now! More when turning or standing still. Everyone progresses differently with PSP, there are others here who have a lot more knowledge than me.

    I hope for both your sakes Dr is wrong,

    Love Debbie x

  • What is it in a MRI scan determines/confirms having a psp?? In my dads reports the size of the brain was seen shrinking in every scan. It was getting smaller during every scan.

  • Yes, Debbieann, my husband does that "turning" thing and trips on his own feet. Falls are either backward but also every which way. But everyone has some of these symptons. Charles leans forward to walk as well.

    I just pray everyday that he won't fall.

    Cuttercat

  • A good summary in this reference

    p-cns.org.uk/PSP%20Fact%20S...

  • I think one of the main things that differentiates PSP from PD is the eye movements, the Supranuclear palsy bit. Can your husband follow your finger, head still, with his eyes from left to right, up and down? My husband lost the sideways movement first. When my husband was diagnosed 6 years ago, the MRI scan at our local hospital didn't show anything so he was sent to Kings as their equipment was newer. It showed a humming bird shape in his brain which is another sign. Check the eyes though. That will give you an idea before he gets a scan.

    X

  • 2 years before i found out those are the systims i use to masager jhons kneck play music keep chating i got abullet and blended all sorts in it to keep his bowels going hope some of this helps

  • I too was diagnosed with PD for about 8 years but I think my neurologist knew I had PSP. After having a MRI scan which showed the Hummingbird sign it has now been confirmed that I have in fact got PSP.

    My symptoms were small handwriting. Also I was slow in movement I thought I had a thyroid problem. My doctor sent me to a thyroid specialist and it was him who thought I'd got the early signs of parkinsons.

    Now I fall over quite regularly,usually backwards. Also my eyes are affected as they keep closing. So I'm not looking forward to what comes next!

  • Yes, this is our story exactly. All the signs point to PSP. Sorry to say, but welcome to our website. We are here for you. I'm fairly new but so grateful. You will receive many posts.

    An MRI will show nothing much. It's a very strange and terrible disease.

    Cuttercat

  • I thought my husband was having ministrokes....my daughters friend said PD (she was a nurse) started reading up on it, he did not have the tremor in the hand but his eyes were changing...went to a neuro asked him if it was PSP, doc did a downward gaze test...which B did not pass and diagnosis was made...we have never had an MRI or other scan....and B has followed pSP progression to a t. He also started falling...but he would fall sort of northeasterly not just straight south as it were....and he'd fall like a tree... none of his limbs reached out to catch him...right through walls, windows etc...and his writing diminished to small scribble....he's farther along now, so here we are at this site...where our new family resides...thank you God!!! I hate to welcome you here , but as you find out his diagnosis, we here we will be!..

    By the way does he have any tremor? That seems to be the huge sign that it is Parkinsons....PSPers dont usually have a limb palsy, more the eyes...not shaking but frozen in a fixed gaze no ability to look down.....My husband calls good luck

    AVB

  • Based on the experiences with my late wife and also with several men with PSP who attend my monthly support group, there are other things to look for that may indicate PSP:

    - difficulty keeping one or both eyes open, often takes a finger to try to keep open

    - sensitive to light, often wants to wear dark sunglasses all the time

    - very soft speech, and later becomes slurred

    - compulsive behavior, especially in the early stages ... blurts out things that may be inappropriate, especially from someone that never did that before

    - loses interest in most things, becomes very agreeable

    - incontinent, needs adult diapers and often needs to be catheterized

    - constipated, often needs drugs or enemas to help void, sometimes doesn't go after 7-10 days .... my wife once went 18 days!

    - face loses a lot of expression, kind a like a stone face

    - handwriting become illegible early on in the disease, they also write really, really small

    - if you ask them to clap their hands 3 times, they usually keep going and will clap many times over

    - stiffness in legs and arms

    - hallucinations - often a sign of a UTI

    - choking on thin liquids

    - temperature goes from normal to extreme and back to normal (98.8 to 103.5 to 98.8) over a short time period and repeats itself constantly

    - backward falls, forward falls, impossible to rise from a chair without assistance or by using hands (try crossing their arms and putting them on each opposite shoulder and then ask them to rise from a chair)

    - oxygen level drops frequently below 90, which is usually an early sign of pneumonia (buy a $10-$20 oximeter to check their O2 frequently). Normal O2 should be in the upper 90's

    - poor memory, doesn't remember names of some family/friends, doesn't know the day of week or today's date, loses some math skills (try counting backwards by 7 starting with 100: 100, 93, 86, 79 ....)

    - may sweat a lot more than normal

    - difficulty using utensils, knocks over glass of liquid frequently

    - shows little emotion whenever you might get upset with them (ie. for getting up when they shouldn't, spilling their drink)

    - as others stated, the Hummingbird sign on a MRI

    They say the only true way of knowing if a person has PSP is by donating their brain to the Mayo Clinic after death.

    I hope this helps a little. It's definitely a tough disease. But for the most part, it's not a real painful disease for the patient, unlike something like cancer. It's probably tougher on the caregiver than the patient, or at least it seems like that at times.

    God bless.

    Ketchupman

  • My dad has been diagnosed with PSP. He had some falls but I believe they were forward until the last one was backwards and he broke his hip. His neck is stiff and tilted forward. We've been taking him to a chiropractor because he has horrible headaches that meds aren't helping with. This is a horrible disease. I believe people should know what is wrong with them but I only tell dad what he asks. He's 80 years old and I don't want him to give up although living in a long term care facility in his condition is not a good life.

  • Yesterday we saw the PA at the new dr. She read R's chart and had him to perform the motor skills test again. It was about the same as last month. I asked for an MRI to look for a definitive diagnosis of PSP ( or to rule it out) and she has ordered it to be done in January during his next visit. She stated that there may not be the hummingbird image, but he could still have PSP. But whether he has the image or not, treatment would be the same for PSP or PD. So how will we know? And what do I need to be doing to prepare in the event it is PSP? Lord, please let it not be PSP....

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