Slow Progression PSP-P and MR Parkinsonism index predicts vertical supranuclear gaze palsy in patients with psp-parkinsonism

[daffodil48]

Hi. well we went to neuro opthalmologst and after having a look said what made them make a diagnosis of PSP? "There is no indication of PSP and tends towards Parkinsons" I explained that the diagnosis was made due to the Hummingbird sign on the MRI. Looked like he didn't know what I was talking about. Report indicates no vertical palsy although does have small amount of elevator palsy od. decreased blink rate. exam looks more like Parkinsons patient. I do believe he was only relying on the PSP-R signs and symptoms. well I was a little confused especially since neurologist had made the conclusion of psp due to the Hummingbird sign. I knew he had no downward gaze problems, no blurry vision. So I went on a hunt and I came up with this report. It goes way over my head in places but what I did get out of it that some people with psp-p do not get vertical palsy or do not get it until much later than within the 4 years of psp-r patients. n.neurology.org/content/neu...

I am going to send this neuro opthalmologist a copy of this article and we see his neurologist in 4 weeks so will see . We do intend brain donation through the brain network so hope we can keep good records to go along with it.

My husband is 4-5 years in since first symptoms. Very slow progression although showing signs of more advanced symptoms. (bad coughing)No backward falls, PD meds did not help so went off them. Worst symptom is dizziness. Speech is getting bad. Sometimes does not bother to reply, bad coughing up phlegm which has been ongoing from the beginning. Still takes care of his needs, dressing, showering etc although very slow. drools due to excessive saliva and hangs mouth open so drool puddles all over. Walks very slowly and looks like Parkinsons walk, shuffling, difficulty on turns. has had 3 falls in 4 years but I have been able to find the cause eg weakness after triple by pass surgery, low blood sugar and one not sitting down properly and missing the chair. He takes a few times to get out of recliner, easier when I tell him to touch toes first, plonks down when sitting down. sits nearly all day in the recliner with eyes closed says he is napping. Has a laundry fetish. always doing laundry. (when not sitting in recliner)sometimes impulsive purchases. always eating candy. Apathy but does not seem depressed. Just doesn't care but he has always been laid back. Has copd wEARS CPAP. does not cough at night wonder if it is the cpap??. Probably stuff I have forgotten. However I thought the article was very interesting as most diagnoses rely only the downward gaze for PSP

[abirke]

Dear D48

11 plus years of med school and the still caregiver must site facts to the doctor! Well, as you have already learned this hard lesson, YOU are your loved one's Greatest Advocate! Everyone on this site has had an experience such as yours , including me. This story is getting old I know, but for the sake of "reassurance" on your behalf, I will tell it again. I told my husbands neurologist that I believed it was PSP.....my daughter's friend studying to be a nurse said it sounded like Parkinsons. I went on the Big P site and did not find the answer there, but it directed me to 'Parkinsonian conditions'; one of which was this ugly cousin of the big P.....this thing called PSP! It fit my husband to a tee. So I asked the Dr if it could be this, he did a downward gaze test and Bruce immediately failed it.....the dr did not need much more convincing but did a mobility test and he was convinced! Bruce was the docs 2d patient in 20 years! Times may be changing however, While we were there, the doctor accepted yet another patient with PSP!

So Good luck , stay informed and keep your husband and you active and PSP free.

Thanks for the info.

Do well,

AVB

[LuisRodicioRodicio]

Could be interesting to have a look to a table with symptoms of diferent PSP types versus PD.

Kevin Dropbox:

dropbox.com/sh/jobf1zdqwuns...

Regards.

Luis

[Kevin_1]

Hi Daffodil

You are amazing, you leave no stone unturned.

Did he mention slow saccades?

It's very often an early symptom of PSP.

(There are some saccadic issues with Parkinso'ns disease, but they are not so marked.)

An area to discuss with him?

Personally I would stick with what a movement disorder specialist says...

Best to you both

Kevin

[daffodil48 in reply to Kevin_1]

he said relatively preserved saccades and pursuits though does have small amount double elevator palsy, (trying to research this) decreased blink rate. We have appt.with neuro in 4 weeks. I will def go with what his neuro says.(he also has movement disorder specialist in his practice so maybe I will ask him to confer with him.) this neuro opthalmologist didn't even seem to know about other forms of psp except Richards. The only thing really pointing to psp is the hummingbird sign, don't think midbrain atrophy comes with anything else. thanks Kevin

[daddyt]

D48... Been there, doing that. My neurologist had his suspicions, but it was the neuro opthalmologist whom he referred me to that confirmed dx of PSP-P through the eye exam from hell. I have both downward and vertical gaze palsy... downward being the lesser of the two. My progression has been slower than most, but steady... I'm not complaining. It's interesting to see how PSP affects no two people the same. Like your husband, I often have symptoms one would experience later on in the disease... go figure. Make the most of this "slower" time, full-blown PSP will catch up. On a side note I named my MRI hummingbird Harley (:

Tim

[daffodil48 in reply to daddyt]

well sounds like you had a more comprehensive eye exam than hubby did. He didn't seem to do any more than the neuro doc does. Told hubby about Harley. Now he is thinking of a name for his.

[daddyt in reply to daffodil48]

It makes it more palatable to humanize the disease (:

Tim

[raincitygirl in reply to daddyt]

Your communication sure hasn't dimmed, Tim - Long may it last!!

Anne G.

[daddyt in reply to raincitygirl]

Hi Ann, Thanks. My written word is much, much better than spoken. My voice is bare audible some days. I spend a good potion of my day writing... it helps keep focused and anchored most of the time. I make it look easy, but the truth is my thought processes are very slow as is the time to write. Also have to credit to the on-line editor (:

Tim

[raincitygirl in reply to daddyt]

Yes, I realize there are no miracles with this disease...but every achievement deserves recognition! Hubby has lost speech (word-finding, sound-forming and volume,) as well as all written communication. I think he is more cognitively impaired as well,but I am sympathetic to those who lose communication capacities and applaud the (invisible) efforts you take to keep them going

Warmly,

Anne G.

[DeDeDickson]

Wow, Do I identify with you! Bob too has all (well, almost all) of those same symptoms as your husband. He started closing his right eye a few years back, saying it was too bright. After a check-up with the eye doctor, he then ended up having cataract surgery for both eyes. I’m guessing he really needed it (71 years old) but I wonder. Anyway, I’ll be “following” you as it looks like our husbands are on a very similar path.

xoDorie

[daffodil48 in reply to DeDeDickson]

Hi Dorie. I just looked at your posts again and looks like you are a couple of years more "into" it than we are. Hubby also had cataract surgery Spring last year and he complains of the brightness. Part is probably psp but I think cataract surgery also contributes. I had the surgery done and can't stand bright light. He has trouble with eyes blepharitis, dry eye due to reduced blink rate and his eyes are closed almost all the time he is in his recliner. says he is napping but ???? I have asked if he is having trouble keeping them open but he says no. I will be following you too xo

[DeDeDickson in reply to daffodil48]

Yes, PD dx about 6+ years ago, PSP dx just this past January. It’s funny because when Bob is in his chair with his eyes closed, he’ll tell me “I’m not sleeping”. So many of the other symptoms are right on, including the impulse buying, which has actually gone on for quite a while .. He always kept such a neat and tidy garage and workshop. Not any more. Are you in the States?xoDorie

[daffodil48 in reply to DeDeDickson]

I am happy that our impulse buying at least is not for very expensive things. It's gone on for a while with him also. Although a few little things can add up. Just yesterday a stun gun flashlight combo arrived in the mail I said what the heck did u buy that for and he said "for you" !!!!!! And have noticed he does his laundry a LOT, every other day. he has done his own laundry for a while now for some reason. Yes we are in the States. in Ohio. Where are You??

[raincitygirl in reply to daffodil48]

Now that's love....you can keep your chocolates: Give me a stun gun/flashlight combo anyday lol!

[daffodil48 in reply to raincitygirl]

LOL

[DeDeDickson in reply to daffodil48]

We are in SC. How close are you to Mayo in Rochester? Did you see that post about going to the conference there in June? Just curious if you were thinking of going. Anyway ... Bob has done some impulse buying for (what I think are) nonsense things ... woodworking planes that he thinks he’s going to refurbish and sell on eBay, even though

he’s never sold anything on eBay.

But, like your thoughtful husband, Bob purchased a new car that he has always wanted, despite the fact that he has never driven it because he doesn’t drive anymore; I’m convinced he purchased it for me to have a nice car.

[aliciamq in reply to DeDeDickson]

We are about the same here as well😐

[Karynleitner]

I sympathize with you. My husband has had pronounced symptoms for 3 years. It was not until Oct. we received a definitive diagnosis . The neurologists were reluctant and said as symptoms continued the answer would become clearer. We went to Mayo Clinic with all of his records last fall. They confirmed the diagnosis and took us through each step of their decision .

Dan does not have some upward vertical palsy and very little downward, but they are both minimal and have developed mostly in the later stages of the disease.

We too were very frustrated without a definitive diagnosis . The upside was that the doctors at that time continued to try to find answers. Sadly, once PSP is diagnosed , there realize there is little they can do.

Follow your own instincts.

Best of luck to you and your Dad.

[daffodil48 in reply to Karynleitner]

Thanks. I am sure in my mind that he has psp-p type. (Because of the neurologist seeing the hummingbird sign) I received the results over the phone as hubby was recovering from gall bladder surgery and I didn't want to make an appt just for results) We have an appt in 4 weeks and I will be able to see the MRI for myself. It just frustrated me that the neuro opthalmologist didn't even seem to know that the vertical gaze palsy etc could wait a few years before showing up. We are still in early stages yet beginning 4th year . I see that yours is in advanced stage and so feel for you and all who are going through this.

[raincitygirl]

Dear Daffodil,

I love you researcher/scientists amongst our group

Hugs! XX

Anne G.

[Jpc1335 in reply to raincitygirl]

For All the people in the U. S who do not have a teaching hospital providing the clinical trials, please consider making an appointment at U of Chicago neurology dept or U of California San Francisco and many others on E coast. If you qualify for the study all transportation, expenses will be paid for by the drug company conducting the tests. Do not think it has to be done close to you if you live in an area a distance from a major teaching hospital conducting the clinical trials.

Donna

[Baytalon]

We live in a very remote area on the Chesapeake Bay. It is beautiful, but isolated. We have one neurologist, but he is a master diagnostician, often called in on cases beyond his specialty for his diagnostic skills. He diagnosed my husband on his first visit, using the hummingbird sign in his MRI. The PSP expert we "visited" via teleconference was "unconvinced." I believe that was because his movement issues were not very noticeable at that point. Almost 2 years later, it is quite evident our neurologist made the right call. We are fortunate that he is familiar with the disease, having treated at least 2 other cases. Our GP who is part of the same doctors' group, also has experience with PSP through work he did with patients in care facilities. I think we are fortunate to have these guys on our care team.

[aliciamq]

We were told the PSP Dx was made by the early onset of the gazillion falls. He said with Parkinson's the falling may not be a problem until 10 yrs. in. We started out falling and 7 yrs. later, we are still falling😐