My husband was diagnosed with Parkinson's 8 yrs ago and with PSP 1 yr ago.My question is-was it PSP all along or did the Parkinsons evolve into PSP.
Do most PSP patients receive an initial diagnosis of Parkinsons? Just wondering.
Is PSP usually initially diagnosed as Park... - PSP Association
Is PSP usually initially diagnosed as Parkinson's Disease?
Written by
JantheNana
To view profiles and participate in discussions please or .
32 Replies
•
interesting question...was it an evolution of the disease,,,,I don't believe that the dr/s believe that Parkinsons "decomposes" if you will, from one thing to another. And if you look at the anatomy of PSP you will find another beast entirely....it has so many things that look like Parkinsons, that it is easily mistaken. I call PSP Parkinsons Nasty Cousin. We have an older man at church who was diagnosed maybe a year earlier than my husband. He is still doing well and I am quite happy to see his ability to live life with Parkinsons.....I now notice a tremor in his wife's hand....hmmm....but when B got PSP it was set and even with the therapies, he did not seem to do as well as the man wiht Parkinsons....
If your husband has been diagnosed with PSP, then my love, it's psp.....and for now, no drugs no therapies just the realization that there's a long road for the both of you ....and an experience of your strength used to capacity .... But guess what ? you can do it! We are here to help and though it wont heal him , I suggest physical therapy, and maybe a gym which has classes or just machines that allow him to be and stay strong...Also do the activities you thought, "Wouldn't that be nice or fun"....well then do it....in two years you will not be able to...so do it now...I told someone else to journal.....I will say it again write it down what's going on in your life.....and if he wants to journal (even if he does not ) ask him q's that maybe you don't know....."what would you want to be if you weren't a dad? husband. Have you ever wanted to sky dive ...dive in the deeep ocean...act in a Shakespearean play.
I learned alot about my husband; and still not enough....
So take vacations early on; write about his feelings/your feelings
Get him into a physical activity
have him read a highlighted part of the newpaper...you read the rest....and tell him what you feel about the way things are going and ask his opinion....This gets his brain to thinking just a good exercise.....
Now about you....Eat well; drink water. Sleep, get away from PSP for a few minutes a day....and take a respite if you need it. Let others help you out....if you need to talk to us ....we are here, scream shout ask answer about psp yes dear it sucks but you and your husband do not......remember that! "We are so hear for you....Spiritually, if you are a praying person pray without ceasing says the Bible so pray....God will fill your life with comfort and strength to continue into this new life of Care giving...He (God) understands what you are going through and will get you through...., I'm not here to preach only support but I've been there and experienced the Grace of God.....Remember you have us to lean on...and Him! so use both....
May you find what you need Jn.....we are hear for you
AVB
The Lord is near all them that call upon Him; to all that call upon him in truth. Psalm 145:18
God is our refuge and strength , a very present help in trouble Psalm 46:1
Hi, I agree with everything AVB has said, including the Bible verses.
My husband received his diagnosis of PSP 4 months after I insisted he finally visit the doctor, taking with him the list of 25 changes/symptoms that I and others had noticed. After 2 scans the neurologist had my original list in front of him when he delivered the devastating news.
Best wishes
XxxX
Thanks for the reply.Don was sent to a neurologist who specializes in movement disorders when his regular neurologist suspected the PSP.When he got the diagnosis I asked if it would be different than Parkinsons and the answer was yes but he didn't explain anything except that it progresses faster.
One of the main differences, and the one the neurologist said "confirmed" his diagnosis was the lack of eye movement. C couldn't follow his finger or maintain eye contact. He stared past him. At that time the diagnosis couldn't be definite until post-mortem but now they can see a hummingbird shape on more advanced scanners.
X
Thanks abirke for the kind words and helpful info.Don currently can still walk but only with someone with him (me). He has had 2 rounds of LSVT big therapy and now has a home health therapist coming 2x week. It helps to keep him some activity as otherwise he would just sit.As far as reading,he reads slowly a lot-spends much of the day reading his large print bible and the newspaper.I often discuss with him things I read that I think he has interest in.
As for me,I don't get much if any relief except for sleep at night-he sleeps well so far.I just try to focus on one day at a time.
Walking may be easy around the house ....but once out, a wheelchair becomes quite an asset...it's just a thought if and when you all go somewhere where walking is long......
What is LSVT big therapy....I am glad he can read his Bible and the paper....I got B an audio 'Bible but did not take much interest in it.....of course if you asked him a question no matter how obscure, about the Bible....he knew it......I have found Isaiah an amazing man with words of comfort . Besides Christ, this would be the man I'd like to meet.....maybe someday, eh?
I don't know how to impress the need for you to take care of yourself.....I am glad you are sleeping well at night....I'am up all hours....still.......
Well I must say you are doing what you can and this is good .....May yoou find joy and comfort in all your efforts
AVB
We do have a wheelchair-right now the biggest obstacle to going anywhere is his incontinence.He is on meds for it,wears adult diapers also but thosr only absorb so much.We are not able to be away from home for more than a couple hrs at most.Tried a condom catherer and that did not work.I cannot send him into restrooms by himself and family restrooms are few and far between.Would love a solution to this problem.
LSVT big is a physical therapy especially designed for gait and balance -primarily Parkinsons patients.The therapist has to be trained to do it.
Hope you can get some sleep relief-right now I think that is the only thing that keeps me sane.I shouldn't say that-it is strength from the Good Lord above that keeps me sane!
Mine didn't. His initial diagnosis was Ataxia! Xx
Mine didn't. He was initially diagnosed with Ataxia. Xx
Hi I think we have all experienced this protracted journey to an accurate diagnosis,. Now my anger has subsided I realise that it isn't the medics negligence just the way the disease manifests itself. It is important though to get diagnosis as it opens doors, my aim in life now is to raise awareness , everyone who walks through our door gets a professional pack, I got a GP pack sent to our surgery! They sometimes look a bit shocked but no one has taken umbrage !
Have a good day
Julie x
I understand what you are trying to do in educating people! No one,even the medical professionals seem to be familiar with the disease.
It is very common for PSP to be misdiagnosed as Parkinson's, often for years. Psp is still quite uncommon, butI is not as rare as once thought, and its incidence will continue to rise as doctors become more aware of the differences.
On the same track, the life expectancy for psp is generally given as so many years POST DIAGNOSIS, not from the first onset of symptoms. In 2011, when I was first trying to learn about it all, the median life expectancy was 5 years. It is now generally said to be 7 years. The change is due, I believe, more to improved diagnosis than therapy. There has occasionally been great excitement generated by the appearance of a local concentration of psp, with the suggestion that there might be an environmental cause to be discovered. It then turns out that there's a doctor with a relative with psp, or some personal experience, who, recognizing it, makes the accurate diagnosis and skews the local statistics.
I think many people die without an accurate diagnosis, from falls, car accidents or pneumonia. My guy had a number of very close calls, like falling off a scaffold while roofing, before we knew there was anything wrong other than a slight drag of his foot.
A very few people who have written here have been misdiagnosed as having psp. There are some complicated autoimmune and neurological disorders that bear a passing resemblance to psp, and psp can have a very different progression from patient to patient, so that makes it complicated.
And that's all more than you asked! Sorry to ramble. It after 3 in the morning here, my guy is restless, and I can't sleep.
Good luck to you and your husband. Welcome to the community. Ask anything, anytime...but know you might get more information than you needed!
Peace, ec
Thank you for the information,I don't think it's possible to get too much! Don's very first symptom ever was excessive salivation.And he fell out of bed and broke his thumb.When the diagnosis of Parkinsons was made I was in disbelief for several years.
My husband was diagnosed with Parkinson's in 2003. In 2011, I noticed some changes in him, particularly his sight/ spacial awareness. I asked if it was PSP, as I had read about it. My daughter agreed that my husband had all the symptoms, but the neurologists wouldnt hear of it saying that PSP caused rapid deterioration. In 2013, they decided to do a brain scan and diagnosed PSP. Like you, I am left wondering was it always PSP? Thank goodness for this site, the people here know by experience what they are talking about. Do use it, as it is a lifeline, particularly when the going gets tough. Best wishes. X
Unlike you we had never heard of PSP until the diagnosis. His sight is especially bad as he only has vision in one eye to begin with,due to a childhood accident.But the eye movement was what made the neurologist suspect PSP. Then they did another MRI of brain to confirm.
Just as ec has stated PSP has often been misdiagnosed as Parkinson's through no fault of the doctors. Early on many symptoms manifest the same as Parkinson's...PSP has been called Parkinson's evil twin. It's not until the PSP patient begins to experience eye movement issues that doctors will revisit the Parkinson's diagnosis... at least that's what I've been told.
All of the above comments are exactly as it is. Remember there is no help for PSP. But as I see it the importance is diagnosis is just the knowledge that you have a terminal disease that will usually run its course in a few years. You can use that knowledge to cherish your loved one and yes do all of the things mentioned in the above posts. Parkinson's is not like that. PSP was my husband's cause of death.
God bless Sue
Most likely if someone is first diagnosed with Parkinson's Disease, the PSP type is PSP-parkinsons.
For the PSP-Richardson's syndrome type of PSP, I don't think PD is a very common initial diagnosis. My father had this type of PSP (autopsy-confirmed). His symptoms seemed more like Alzheimer's than Parkinson's - dementia, personality changes, poor judgment.
My PSP was originally suspected to be Parkinson's. I had arrived at the ER with a preliminary diagnosis of a major CVA/stroke ten minutes into the visit. Early the next morning I was questioned by the head of Neurology about Parkinson's Disease. When I informed Dr. Freiberg that my father and my maternal grandfather had died after lengthy battles with Parkinson's. I literally saw a light go off in his mind. Accordingly I was somewhat surprised when he returned at noon and told me he strongly suspected I had PSP. As I had retired from work due to other disabilities I spent about a year caring for my dad around the fifteenth year of his twenty year battle with Parkinson's and advanced rheumatoid arthritis, I was actually pleased that the diagnosis was anything but PD. Of course, I had never heard of PSP and what it entails. After a week in Neuro ICU and four days on a regular floor, I left Tulane knowing only that I had suffered my second stroke in eleven months and that I had PSP.
When I met with Dr. Freiberg two weeks later I began to suspect that PSP was worse was more serious than PD. After that visit and my beginning to research PSP myself I had renewed respect for Dr. Freiberg and the rapid diagnosis. Needless to say having this man overseeing my neurological care gives me great solace. He's a straight shooter who shows great compassion, a rare enough trait in any physician.
In the end I guess the accuracy of the original diagnosis means little compared to the fact that the correct one gets made.
Best of luck to you and yours. Hope this was helpful.
Steve
P.S. A DAT scan can confirm or rule out PD with great accuracy. In my case the only facility that performs these scans in New Orleans does not accept any insurance and requires a $4,000.00 + cash deposit, which was too rich for my circumstances. Best wishes.
Wow! That was a sudden eye opener.
I think the PSP diagnosis for my husband is correct,especially after reading all I can about it,including on this website.The true to life experiences of other people has educated me a lot about what is and what isn't a part of the disease.
I feel so much compassion for others that post here and at the same time it helps to know you are not alone and other people can understand your struggles because they experience the same things
I wish you and your husband nothing but the best. I'm on the verge of total surrender and it's a very lonely place. You have no idea of how much you mean to him and the silver lining in his particularl cloud is that he has you. Cherish those things and maybe it will get you through the rough patches.
Steve
Steve,I don't know what you are meaning by total surrender,but please don't give up on yourself! You are worthy of all the care you can give yourself.I hope you have someone to help you and to keep you from being lonely but if not,then give yourself all the encouragement you can.You deserve it!
Steve,I don't know what you are meaning by total surrender,but please don't give up on yourself! You are worthy of all the care you can give yourself.I hope you have someone to help you and to keep you from being lonely but if not,then give yourself all the encouragement you can.You deserve it!
Thanks for your concern. This disease has totally defeated me in every conceivable way. A visit with my neurologist yesterday helped pick me up a little. Except for him, however, and those in this community, I feel utterly alone. I miss what Bruce Springsteen called "The human touch." Anyway, I'll be okay. I no longer have any hopes or expectations, so I shouldn't suffer any more frustrations, right?
Hope all is well with you and yours.
Steve
P.S. I updated my biography and some of that may help you understand where I am at. Unfortunately, the site has dumped my symptoms, conditions, and treatments five times and I refuse to try again.
Steve,I read your biography and what struck me while reading it was that you need to write a book.You have a world of life experiences to tell about and you have a way of expressing yourself that I'm sure would result in an interesting read.I'm no writer myself but I read a lot.
God Bless!
Thank you for your lovely compliment. It's something I've considered for some time. Maybe when, or if, my depression lessens, I will. Just hope I have the time and energy.
Steve
I hope you have the time and the energy also-and who knows-it might just lessen your depression to have a goal to work toward.Just a thought.I'm certainly not a mental health professional!
I would love to be capable of writing but know I don't have the talent.
Time will tell, I guess. My writing ability is mostly self-taught and I believe whatever skills I possess remain long enough for me to make some real contribution for those who follow.
Steve
Sorry that made no sense. Oh well.
I understand what you meant-have a peaceful night
It was in our case. The speech softness, gait issues, motor skills, etc kept leading to Parkinson's but the lack of tremors and lack of effectiveness from the drug protocol eventually lead to PSP diagnosis.
Yes, mostly Dr. can't identify at initial stage. It happens in my father's case too. We can cross check it through hand movement. If hand shakes only in use, it can be PSP and not Parkinson. I noticed, Parkinson patients' hands shake always, whether they use it or not.
Not what you're looking for?
You may also like...
Is there a family link with PSP?
My mum died in 2022, having been diagnosed with PSP in 2020. She had originally been diagnosed with...
This helps w/Parkinson's has any1 tried it for PSP?
Am I the last person to hear about this? I wonder if anyone has tried it for PSP. I'm thinking a...
Mum diagnosed with PSP yesterday
So my mum who is 83 was diagnosed by the Nuerologist yesterday with PSP. Mum was admitted 5 weeks...
Newly Diagnosed PSP
My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopms since almost two...
Husband Recently diagnosed with PSP aged 41!
Hi everyone. I came across the PSP Association online. I have never written on any kind of forum...
What is PSP?
PSP disease
Is PSP hereditary????
Women Diagnosed with PSP
