for quite a while. Over the past couple months she would make a smacking motion with her mouth which seemed to indicate dry mouth. She also would sometime repeat a word back to you when responding to a question. For example I would call and say "Mom?" and instead of answering back with "yes" she would say "Mom." But these were small things that happened over many months. This past weekend she just seemingly lost all ability to communicate...all within 24 hours. She mumbles "mamama" when trying to talk and its all the verbiage she can get out. It clearly terrifies her and you can see her thoughts are wanting to communicate but the words don't come out right. She has been hospitalized since November and is on many different drugs for both the depression and the PSP. Has anyone experienced a drop off in communication so severe in literally one weekend? We are having her drug regimen reviewed, but would love any feedback. I was just talking to her on the phone last week and she could carry a conversation fine. Then Monday she cannot utter more than "mama" and sometimes "ok." Its heartbreaking and I cry when I call her because I cant bare to hear her cry and only be able to mumble. It scares me she may die soon. She's only 59 and I just finally got her grandbaby 18 months ago.
Hi, My mom was diagnosed with PSP a few mo... - PSP Association
Hi, My mom was diagnosed with PSP a few months ago, but due to previous clinical depression and extreme anxiety it likely went undiagnosed..
Hi jrock777
This is so sad and devastating for both you and your mom.
Just a few brief remarks.
1. For your mom to repeat your words (called echolalia) is a common symptom in many neurological diseases, and has been described in PSP sufferers
2. Many PSP sufferers are initially misdiagnosed with depression, and hence given unnecessary medications. (We've just been talking a lot about depression on this forum, so please check our remarks).
3. I would be concerned about medications for depression and their side effects. It is good you are reviewing her drug regime. It may be in her interests to experiment with removing most of them (slowly for those that have side effects from rapid cessation). Drug interactions need to be reviewed.
4. Since she is only 59, perhaps her neurologist will consider a co-morbidity of FrontoTemporal Degeneration (Pick's disease). This is a complex disease but has the same protein (tau) "go wrong" as in PSP. Some forms cause can cause "language problems".
5. From your description it seem your mum has had a rapid inability to communicate. Some symptoms of PSP will be like this, and it is possible she may recover somewhat as you try and communicate in the future. It's often an "off and on" situation. This could be due to the fact that in neurological diseases like PSP/CBD/MSA etc the sufferer has both neuron damage and neuron death. Some of the brain areas affected by the disease will be functioning, say, on perhaps 10-20% useful neurons. This can mean they may have the ability to continue for months or years (like managing to shuffle along, or talk reasonably, or swallow with only a few problems etc etc), but then when the "load" of neurons that remain functioning is exceeded by further damage or death of the neurons, then the mechanism shuts down (like unable to walk, or talk or swallow etc etc).
I would love to be able to give you some solutions to change the situation, but I have none. We travel a similar road on this forum, both carers and sufferers. Keep us informed, especially about changing (or ceasing) her medications. Others on this forum will share their thoughts and experiences.
Take care.
T
For those reading this post, they may find it interesting that there has been rare cases at autopsy of patients showing brain morphology and pathology (that is tangled tau proteins and other things) that indicated PSP.... BUT in life they had no symptoms! This appeared to be because the "load" of damaged/dead neurons had not been exceeded to cause symptoms.
I should have checked on your previous posts....I see your mom has been treated for clinical depression for 30 years. Thus some of my observations may be disregarded with respect to depression. You have mentioned anxiety as a problem, and this is common in PSP.
T.
Strelley, you post was extremely helpful thank-you so much.
My mother is at the University of Iowa hospital and I am with my own family here in Orlando. We visited my father (her carer) and mother for a week at Christmas. Its very tough being so far away, but we don't have the financial ability to pick up and move or stay there temporarily. My father has been her 24/7 caretaker for many years. It has taken such a toll on him. He beginning to not take care of some responsibilities (such as renewing car insurance or paying a bill) because he seems to be giving up. I was shocked to hear he got a ticket for lapse of insurance and registration because if you knew how particular my father was.....well its just completely unlike him. So I worry about them both and he is losing his identity now that she is hospitalized and seems be going towards a vegetative state.
My father visited her yesterday and he says that she was able to get a few sentences out hear and there. Very minimal. But is an improvement. But unlike her usual crying and moaning she now seemed to be clenching her jaw closed for the majority of time he was there. He was thinking it was because she may know she is unable to get most phrases out verbally and was intentionally trying to prevent herself from speaking non-sensically. But I suppose it could also be the locked syndrome.
Many thanks.
Jeremey
Jeremy, we just started a support group for PSP in the Orlando area. We have identified four people/families in Central Florida. If you would like to be on the list for notification of our monthly meetings email me at Jim.pierce@gmail.com. If others are also interested let me know. We are operating under the USA organization CurePSP. Good luck and well wishes to your family wrestling with the evil disease. Jimbo
Thanks Jim....email sent.
Hi jrock777,
My husband's speech declined over a period of time. I can only understand the occasional word or phrase now, but not without asking him to repeat a number of times. He is only 57 yrs old, and our youngest daughter (19) is still at home. We are currently looking into a live in care facility for him, I work full time, our daughter works full time and he has lots of falls, and needs lots of care. It is terrible to see someone this young facing this disease. It's horrible at any age, but not expected in someone this young. I hope things get sorted out for your mom.
take care,
joan
Bonjour dear jrock. Your message sent immediate shivers down my spine...and Mum is only 59. It seems that recently we are getting more and more postings about PSP being diagnosed in younger people. It scares me.
It's generally only diagnosed in its later stages with a latent period of many years ,so obviously sufferers are into their seventies or older. But your dear young Mum has speech loss problems already.
I recall my spouse's echolalia as one of her first PSP symptoms concurrent with early falls...but that phase lasted
some while but never really lost her ability to speak as in your Mum's case.
I repeat...all PSP patients are different...and heroes.
Our friend Tony Strelley ,as always, is right to the point about medication in his posting to you.
May I add that when I hear a carer mention that their loved one is receiving medication for PSP disease I don't know whether to laugh ...or cry¨
There is NO KNOWN OFFICIAL medication/drug against this disease available anywhere on this Planet.
I add YET! Because there have been clinical tests carried out on two or three...and one was a disaster. And I am very hopeful that one day soon there will be.A lot of carers are also, rightly, trying parallel medicines, herbal, etc.
So, jrock, where does this leave us...you,your daughter and grandchild?
Simply in our thoughts and hoping these words give you some comfort in this totally unjust and horrendous disease that we on this forum all know only too well.
with you in mind,best brian
Hi Brian,
I may have misspoken about the PSP medication. My father (who is with my mother in Iowa) is under the impression she is being given meds to specifically treat the PSP. I am guessing maybe some type of drug they are using in addition to her cocktail of psych meds.
Her 30 year history of psychiatric issues have really complicated this mess. I sometimes feel her psych issues are related somehow. Maybe they were a precursor or some of her meds caused the onset or encouraged it to come on quicker than it would have on its own.
IDK
I'm so sorry that this is happening to her at such a young age... my mother has PSP and has experienced the same symptoms as your mom. The repeating the last word said to her, the "catch phrase word" which for a long time was "yeah right"... it's hard to watch her wheels turning when searching for a word but nothing comes out. It seems like her speaking fell off rather abruptly too. My mom also cries when she's frustrated. She is now experiencing mouth sores due to an over abundance of saliva and not being able to controld her swallowing. All of this has been happening over the past 2 years, my mom is now 81. Again, I'm very sad for your mom to have all this happening at such a young age. I do know that PSP affects it's victims at all different ages. Is she in a nursing home? Is she able to walk anymore or confined to a wheelchair? My mom hasn't walked in 2 years. It's all very hard for everyone involved.
Cawbird, are you using a lift and what kind? Thanks. Jimbo
Jimandsharynp. My mother lives in a assisted living and is transferred from chair to wheelchair 24/7. Transferred by the staff that work at this fabulous place. The best care that we could ever hope for. Luckily, mom is just over 100 lbs. and is easy to transfer. There is a man who is a resident where mom lives that needs a lift, it's quite the machine... I can find out exactly what it is called.
That would be helpful. Thanks
So sorry this is happening to you mom. Why has she been in a hospital for so long? In the US they get patients out asap. My husband cannot say much any longer but this declined over a period of several months. I'm amazed about the medicines. My husband takes quite a few drugs but they are all for co-morbidities, not the PSP. It will be interesting what the doctors decide to do. Keep after them about what she is taking and why. Please stay connected to this website. It's a godsend!
Caroline
Hi Caroline,
She is at the University of Iowa Hospital. Yes, they were trying to boot her out after only having been there a week or two back in November. But she came due to unusual circumstances and they have a liability issue. She cannot be released back into my fathers care because they were hospitalized simultaneously. He's been her carer for many many years. The last few have just wrecked him. He has fallen apart. I didn't know how bad it was. This past November the Iowa sheriffs dept called. My parents were both found incoherent after a neighbor called 911 for screaming.
My father was in a diabetic state of confusion upstairs. My mom was unattended downstairs. My dad was fine after they fixed his blood sugar, but they will not release her back to him. And he knows he can no longer bare that responsibility. She would stay awake for a full day sometimes and then also sleep for a day sometimes. He could never get on a sleeping schedule and was always trying to be awake so he could make she wasn't doing anything to harm herself (like fall or try to do go down stairs.)
Trying to sleep here and there finally took its toll and he forget to take his diabetes meds one day and bam....everything hit the fan.
She is in a geriatric psych unit right now. She is not allowed to have a TV or a computer. Its terrible. She can't really communicate with anyone now....so she literally has nothing to do and nothing to occupy her mind.
We are trying to get her transferred to a nursing home, but her age being under 62 is a hindrance.
Thanks for your reply,
Jeremey
Jeremey, you and your dad have your hands full. Distance makes everything more difficult. Hang in there. Ever think about bringing one or both here even for a short time? Just a thought.
Jimbo
Oh, Jeremy, I'm so sorry for all that has happened to your parents. It is a really sad story. Does she have a neurologist that can take charge? I don't want to start suggesting things because it sounds like this is a really unique set of circumstances. And I guess I'm glad they will be responsible for her until something more appropriate is found.
Don't let yourself get run down and overly anxious about your mom. She is safe in a psych unit even if she is bored. Get as much sleep as you need and don't spend all your free time at the hospital. Let the social workers do their jobs and find her a place.
You are all in my prayers -
Caroline
Time
Tracheotomy?
Lets Get Personal -- Caretakers 
Mom with CBD declining
Is there something else we should be doing?
