Temporary speech recovery in PSP! Not VitalStim.


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Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Mon Nov 07, 2016 2:49 pm

Has anyone tried Vitalstim Therapy? I've been reading about it and I'm thinking about asking my Mom's doctor about it. My Mom has completely lost the ability to talk and it's so frustrating to her and so sad for us. We know she has things she wants to say, but just can't get the words out. We've tried a letter board, using a chalk board, etc., but she's not been able to use either. Her eyesight has grown progressively worse and her one good hand just doesn't have the strength to write on the chalk board. The Vitalstim Therapy sounds promising, just wondering if anyone else has tried it...

DeeDee
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Re:Temporary speech recovery in PSP! Not VitalStim.

Postby eplowman » Tue Nov 08, 2016 1:47 am

DeeDee,

I have not seen or heard of any documented evidence that a PSP patient who has lost the ability to speak has regained that ability through electrical stimulation of the body's systems involved. That void still exists at NIH/NINDS as well re. any positive impact of electrical stimulation therapy on patients with incurable, untreatable, progressive neurodegenerative diseases. Tests by the merged companies (now under the DGO name) that manufacture rehabilitative products (and own the patents involved, including for the Vitalstim device) reportedly are continuing ("as expenses permit"); maybe we'll hear something definitive eventually.

I still remember well the words of the hospital/clinic speech therapists to whom my late wife Rose was referred nearly 14 years ago: "speech therapy cannot help patients who have a degenerative brain disease."

But there are oddities that we may discover along the way and are noted by members here -- and =may= serve as a sign of hope. There was a forum member here, a man who visited his older friend in a nursing home who had advanced-stage PSP and no longer could speak intelligibly -- but who was found listening to favorite songs from the past on a stereo -- and was singing aloud the same words flawlessly! Until he realized he had company! Then his vocalizing abruptly stopped.

I had the same sort of experience several times myself with Rose. One Sunday morning, we were visiting a Presbyterian church in a nearby neighhood. Rose was already 6 years past diagnosis with PSP, and could barely speak beyond grunt sounds. As a child, she had attended a Presbyterian church, had memorized the Apostles Creed and could recite it, and knew and sang a bunch of hymns. On this particular Sunday years later, she was seated on her transport chair in the center aisle at the rear of the church. I was seated next to her on a pew to her left, and our caregiver was seated behind us. As the service progressed, the congregation stood, and recited both the Lord's Prayer and the Apostles Creed -- and I could hear Rose recite both distinctly. Every word! I was astounded but avoided glancing at her. Then came an old and familiar hymn. Again we all stood, while Rose remained seated. As we sang, our caregiver reached over and tapped my arm, and pointed to Rose. I could see and hear her singing =normally= every word in her familiar alto voice. She saw me looking at her, and suddenly the "spell" was over. Her singing stopped. She was derailed and back to the new/bad normal, so to speak.

Reflecting on the Sunday at church later, I concluded that the brain must have the equivalent of "memory caches," like computers have: content repeated many times is stored in a special reserved location in memory, along with all the "instructions" necessary to implement instant recall and function. That would include routes to take to reach and activate throat and mouth muscles, etc. Just a theory, but it may deserve more attention by researchers, I think.

What about others of you here? Have you had any kind of similar amazing experience with your patient with PSP?

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re:Temporary speech recovery in PSP! Not VitalStim.

Postby grandmakcat » Tue Nov 08, 2016 11:02 am

Ed,
My husband did the same thing! He was so fortunate that he didn't lose his ability to speak totally until the very end. His speech was slurred, soft and often confused but he still managed to communicate the best he could. Four days before he passed away he took the turn and his chaplain from Hospice arrived. I left them alone and I could hear Jeff talking to him and praying with him. Jeff started to sing and the next thing I heard was my husband singing along with him! He didn't miss a word! I was so surprised and blessed by it all. He didn't speak again until two mornings later when he whispered he loved me and kissed me and that was the last he communicated outside of a few hand squeezes and a slight smile when his best friend arrived that afternoon. I know that for some the speech disappears so much sooner. I cherish every memory and hearing him singing so clearly from his depleted body will always amaze me.
DeeDee my heart goes out to you as you continue on this difficult journey with your Mom. Hugs and prayers for God's grace for you both!
Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re:Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Tue Nov 08, 2016 11:28 am

Ed and Ronnie thank you both for the replies. I've noticed that when I play music for my Mom she does her best to sing along. In fact, music seems to be the only thing that calms her when she gets agitated. I guess I'm just grasping at straws, trying to find a way to for her to communicate with us. It's so heartbreaking to see her trying to tell us something and not being able to get the words out. We have a system of hand squeezing for yes and no answers, but other than a handful of words, that's all we have now. She's to the groaning stage, which she does almost constantly. She also seems to be saying "away" a lot. When we ask her if she wants us to go away, she says no. We're not sure why she says it or if that's really what she's saying, but she'll say it constantly.

I'm so thankful for this forum! Just reading about others who are going through or have gone through this help so much!
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby eplowman » Tue Nov 08, 2016 11:37 am

Ronnie,

Thank you for sharing those "unforgettable" moments for you.

It prompted me to look back on member Loraine Marie's experience she posted a few years ago, and my reply at the time:

We may need to separate these "remembered speech" posts into a separate topic.... ed p.
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Postby Lorainemarie » Fri Jul 18, 2008 8:20 am

A few months before she died, my mother had a period of improvement. The nursing home staff kept telling me that she was improving but I thought they were crazy at first. One of the staff told me that she was singing softly along with Frank Sinatra. A nurse told me that she creeped down the hall in her wheelchair. I never witnessed it but the staff gave specific examples so I believed them.

Her diet hadn't changed. Her medicines hadn't changed. The improvement was shortlived and unexplained.

I wished that I could have heard her singing voice. She wasn't speaking above a whisper at that point and I hadn't heard her sing in years. I still wish that I could hear her sing. The funny thing was that she never liked Frank Sinatra.
-Loraine
Mom: Marg-PSP-dx Aug'03-Died May'07 age 81.
Dad: Joe-Primary Progressive Aphasia with Frontal Temporal Dementia-dx Mar'06-Died Nov'06 age 84.

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Postby eplowman » Fri Jul 18, 2008 10:30 am

But, Loraine, forget Frank, she KNEW the SONG! :P

This phenomenon among PSP patients has been reported in the forum by a number of their caregivers -- as I'm sure you recall. My Rose was one of those patients. After she no longer could speak an intelligible word, the caregiver and I, sitting beside her at a Presbyterian church one Sunday morning, HEARD her singing along with the congregation a hymn she had known since childhood. Just like always (years earlier). She also recited the Lord's prayer softly but loud enough for us to hear that same morning. We congratulated her afterward and encouraged her to sing the same hymn along with us in the car on the way home. She couldn't.

This phenomenon happened a half dozen or so times (that we noticed) over several months of church services. But only in "spontaneous" mode. If I leaned over to listen to her, and she spotted me doing it, it stopped.
------------------------------------
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Tue Nov 08, 2016 1:39 pm

Thank you for posting these stories, they are so sweet and so personal. My Mom seems to respond more to me than anyone else. Sometimes I know it hurts my Dad's feelings that she doesn't respond to him as well as with me. He's told me that she doesn't look at him as a "husband" anymore, just a caregiver. It breaks my heart that he feels that way after over 58 years of marriage. I assume this is normal though.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Tue Feb 28, 2017 4:34 pm

Just an update on my Mom, over the past few weeks she had been eating less and less with a lot of choking. This past Sunday my Dad asked her if she was wanting to die, and she indicated (through blinking) that she did. I know that she's tired of fighting this terrible disease, and tired of having no quality of life. I honestly don't blame her for the way she feels, but I'm having trouble processing this. Up until now, she's told us that she didn't want to die, but we haven't asked her in a while. She's been so strong through all of this and I know she's tired. She went from being a very independent, prim and proper woman, to having to depend on someone else for absolutely everything. It breaks my heart to think that if her nose itches, she can't even scratch it. We're having a small family birthday party for her this weekend to celebrate her 76th birthday. I know this will be her last with us and it makes my heart so sad to think about this. She has fought a good fight; when we left the hospital in July of last year they told us she wouldn't make it more than a couple months. I'm so thankful for the time we've had with her and I know that we'll be together again one day. I asked her once, back when she could still talk a little, if I would know that she's my Momma when I get to heaven. She said I would...I'm just going to keep believing that.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby grandmakcat » Tue Feb 28, 2017 4:48 pm

Dee Dee - big (((((((hugs))))))) to you and your family. When my husband said he was ready to go, it didn't take too much time for that to happen. As hard as it was then and still is 7 months later, I know he is no longer suffering from this horrible disease. Watching a person go from being a vibrant, strong, individual to a shell that needs assistance with every aspect of survival is devastating to say the least. My comfort now is that Denny is whole and free and I will see him again. Hospice was wonderful and such a comfort and Denny didn't suffer. It is just very difficult for those of us left behind.... I am praying for all of those dealing with this disease, their caregivers, and their families every day. Be strong and know that your mother loves you!
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Larryl1882 » Tue Mar 28, 2017 3:23 am

Wow, this is my first post here, and I just had to say something. Dee Dee I feel so bad for what you are going through with your Mom. I wish there was something that would make it easier for you. The one thing that you can hang on to is the Love that you and your Mom have for each other. You hold on to that, and cherish it every day!
My wife was diagnosed with PSP about a year ago. I have no idea how long she may have had it, but knew something was terribly wrong when she retired and just went to bed, and stayed there. It took me quite a while to finally realize that it was not just her giving up on life, but that there was something really wrong. It took almost two years, but we finally got the bad news. I am the only one taking care of her right now, as she can still talk pretty good. She cannot walk at all on her own, and now even with a walker she is having problems. I get really upset at times, and just don't understand why, but I know that I have to go on, and be strong for her. We are both retired, but I have started a small business. It is getting really hard to do everything, and try to keep my business going as I am up almost all night. I am trying my best to learn what to look for, and I am lucky that in the Military I did work as an emergency medic, so I can see things that maybe I wouldn't have been able to. The thing that I cannot seem to find an answer to is the fact that her blood pressure seems to go up and down a lot. I take it every day as her Dr. noticed it was really low, and wanted to take her off of one of her blood pressure medications. I told her that I would rather not right then, and that I would take her pressure for a few days. I found that it went back to normal within a day. Then it will elevate for a day or to, and then go back to normal. No one seems to have an answer as to why.
Well it's 4 AM and I have to take my beautiful wife "Ruth/Ruthie" to me, to the Dentist today, so I better get a few hours sleep. I am so happy that I found a place to share my experience, and ask for help/advise. We have been married 41, soon to be 42 great years, and I just cannot imagine what life would be without her. I ask God to PLEASE give this horrible nightmare to ME and give this wonderful lady the life in retirement that she deserves.

Everyone keep the faith, and Dee, give your Mom a big hug today!

I hope I didn't break any rules here.

Thank you all so much.

Regards,
Larry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Brutus22 » Tue Mar 28, 2017 9:50 am

Hi Larry,
Just wanted to let you know that we have also had the trouble with blood pressure and our doctor has told us that it is just another PSP symptom. My husband has passed out a number of times and has even ended up in the hospital with no explanation. We now have a routine in the morning before he gets up. I raise his legs up and do different stretches and and exercises because they tell me the blood settles in his feet. Then he sits bedside and we go thru arm exercises. So far it has been 4 months since the last episode so maybe it is helping. I have stopped taking the blood pressure because the numbers drive us crazy. He used to take meds for high blood pressure but we stopped that 2 years ago. Maybe this info might help you.
Terry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby zymurgy » Tue Mar 28, 2017 12:31 pm

I am always impressed at how different each person with PSP is. I see on Dr. Golbe's blog that they seem to fine-tuning diagnosis. For whatever it is worth, here is where we are. My husband has entered year 5 since diagnosis. His blood pressure is normal. He cannot stand unaided. He can walk with assistance --we weighed (with 40# of weights) a three-wheeled walker which keeps him from falling backwards, but he is in a wheelchair most of the time just so I have a bit of freedom. I do notice that he seems to have difficult getting his feet to start moving. I tap his legs to get the nerves innervated, which works. He uses a stationary bicycle for 35 minutes almost every day. He eats regular meals but has trouble drinking thin liquids. His cognition is slower than it was. His biggest problems are his double vision that seems to be getting worse (prism glasses made no difference), his voice is getting softer, and fatigue. Any solutions to those three would be most appreciated! The "what fresh hell is this" moment was when I heard him getting into the shower by himself. I am his 24/7 caregiver.
Best to you!
Christine
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Wed Mar 29, 2017 10:37 am

Oh, Christine, your "what fresh hell is this" thought called to my mind too many such instances I had with Phil.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Larryl1882 » Wed Mar 29, 2017 12:38 pm

Thank you for that info Terry. With my wife, she just doesn't seem to be able to make her legs start moving with the walker. I found that if I start to move it forward for her that she seems to be able to start them moving. Her left side is what is hard for her to control, especially her arm and hand. I have tried standing her at the kitchen sink and having her do different exercises, but that is getting harder for her to do also. I can get her to lift her leg enough to get her slippers on after her shower, by tapping her lags also. She says that there are times that it really hurts her to swallow. It sounds like she is gulping all the time when I give her her medication. Her sister had started taking her to her Dr. and in the beginning It was fine, but when I realized that she was not being helped, and they had no idea what was wrong with her after all the tests, is when I found the Dr. that is doing research in PSP. She knew within five minutes of seeing her that she had PSP. She said that all any neurologist had to do was notice how she could not look up or down. The problem is that she really has not taken the time to really explain what it was, and that's why I started looking on the internet to try to find out more, and found this great forum. The Dr. that she is seeing now wanted to take her off of her blood pressure meds as soon as she saw that she had low blood pressure. The problem is that tomorrow her blood pressure could be HIGH!! So every tine she has a problem, I really feel that this Dr really has no idea what to do, as she knows nothing about this disease. Now she is saying that her legs hurt, so I have to try to figure out if it is the PSP, or something else. She stays in bed 24/7, so that could be something to look at also.

Thank you everyone for your suggestions and help.

Regards,
Larry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Brutus22 » Wed Mar 29, 2017 1:54 pm

Hi Larry,
This disease is so maddening. Mick has trouble with everything on the right side. His thumb is folded into his palm and he cannot straighten it. He cannot write at all. I thicken all of his liquids and he gets all meds with applesauce because of choking. We have had the swallow test twice and he does have silent aspiration. He does not complain about leg pain but he has restless leg so he is moving all night long. Our neurologist does not want to introduce any new meds for that because he takes a lot for diabetes and thyroid. It's good you came to this site because I have learned a lot here.
Terry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Larryl1882 » Thu Mar 30, 2017 2:09 am

Thank you terry!

I am going to see if this might help her, and maybe make it easier got her to take her medication. I never thought about making her drinks a little thicker. I'll try that also.

I AM curious about another thing that I forgot to mention. She has started to scratch a lot. I had thought it was just when I took her out of the shower, and was drying her hair, or when I was taking her blood pressure, but tonight when I was helping her try on some new clothes that I had bought for her, I noticed that she was really scratching the trunk area. One spot on the left side was really pretty bad as the skin was completely gone. I tried to get her to stop, but couldn't. I finally just put some salve on it and covered it with gauze, and she finally stopped. She will also bite her fingers around the fingernails so that they will bleed quite a bit. She always had perfect nails, and would just NEVER bite them. She is also complaining that her legs hurt above the knees. I will be taking her to the Dr. next week, but this one really knows nothing about this disease at all. The Dr. who diagnosed her is almost impossible to see, so I really have no idea at this point what to do. I am going to send her an email, as I have noticed that she will at least answer me.

You are so right about this thing being so maddening!! One thing I have always been pretty sure of, and that was that I pretty well had , or could, control whatever came along in life, and taught my people the same thing. I have to say that I really feel so helpless with trying to figure out how to handle this, and keep my wife as comfortable as possible. I used to feel so guilty when she would fall, as I wasn't there always. I would be in another room and wouldn't realize that she was getting up. I now have at least figured that out as I now have a monitor that I can clip to my belt, and when she even starts to try to get out of bed I hear it, and come running.

Hearing what everyone has, and is,going through here is really frightening a little as I just hope and pray that I can be able to handle it as well as others here have.

Thank you!

Regards,
Larry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby zymurgy » Thu Mar 30, 2017 8:46 am

Larry, you might search "Helpful Supplies" on this site. There are many suggestions which have made my life easier! Also, search "itching" and you will find a helpful thread there.

Paying forward...
Christine
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Thu Mar 30, 2017 10:12 am

Larry: Phil went thru' the 'scratching phase' too. I found some adult-sized 'mittens' that were for washing dogs - really just two heavy wash clothes sown together. We put these on Phil's hands to keep him from scratching... just like for a baby. Also, I/we put a really good skin lotion all over his body after his bath. That helped immensely.

Kate
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Larryl1882 » Thu Mar 30, 2017 9:43 pm

Thank you Christine, I will.

Kate, I was thinking I may half to try something like that, thank you. I also think I may have to do her nails differently. She still wants them to be more pointed than I see other Ladies do theirs, but that it the way she has always done them, so I did it also. I noticed that she starts out more like she is rubbing with the tips of her fingers more that scratching, so maybe if I just file them down, and make them more round it may help. I was also wondering about the gloves, but she may just take them off.. I have so much to learn.

One thing I have noticed here, is the People who were/are unable to speak clearly. When my wife was diagnosed a year ago her vocabulary was mostly "yup" even when it really meant nothing. "OK", and an occasional, "I am", and "I will". You could hold a conversation with her, and this was mostly what you were going to get for a response. When the Dr. diagnosed her she put her on a heavy dose of an experimental drug that was for people with Parkinson's disease. It is called,... IC CARBIDOPA-LEVODOPA,.... understanding that if we noticed no change to take her off right away. My understanding was that it was for muscle stiffness, and to try to control her shaking of the left hand. She will shake it as if she just burned it pretty bad. The interesting thing is that it really affected her speech quite a bit. I remember her saying to me one morning when I was giving her her morning medication, "why am I taking this, it isn't helping me", and it really wasn't, as far as the hand shaking went. I was a little surprised but realized that she WAS talking and answering questions much more, and with more words. I was a little annoyed with myself that I didn't notice it before her question. Today, a year later, she can hold a conversation with me, and her sister much better. I had no idea this was going to work like it did. Her Dr. was impressed enough that she wanted to up the dose, but I noticed that she was getting quite dizzy right after I started the new dosage, and had to go back to the original dosage. I just thought this info might help others, so wanted to mention it.

Thank you everyone.

Regards,
Larry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Brutus22 » Fri Mar 31, 2017 4:56 am

That is interesting because Mick has been on the carbo for a couple of years and it has not helped his speech. I am not sure it does anything but the Dr keeps him on it. Does anyone have this experience - lately when I ask him something he stares at me like I am speaking another language and then just turns away without saying anything. This can happen over and over and then he will finally answer.
Terry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Fri Mar 31, 2017 10:54 am

Terry, your husband's reaction to you talking to him might be what I called 'lag time' (but there is a correct name for it). I found that I would go in and say to Phil that I had something to talk to him about; say what I had to say and tell him I would come back in a bit; that would give him time to process what I had said; I would come back in 10-15 minutes, repeat what I had said, and then he was able to respond.... in some manner.
Kate
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Robin » Fri Mar 31, 2017 12:18 pm

Hi Larry,
Carbidopa/levodopa isn't experimental. It's been around for decades for people with Parkinson's. Brand name is Sinemet. It rarely helps people with speech. Glad it helped your wife. Yes, dizziness can be a problem as a side effect is a drop in blood pressure.
Robin
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Brutus22 » Fri Mar 31, 2017 3:05 pm

Thanks Kate. I will try that. Maybe I need to be a little more patience. It is a challenge.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Fri Mar 31, 2017 6:03 pm

Terry, if this disease taught me nothing else it was Patience.... PSP = Practice Supreme Patience.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Larryl1882 » Sat Apr 01, 2017 2:25 am

Thanks Robin.

I guess I said it wrong. The Dr., by the way I guess I can give her name here. It is Dr. Diana Apetauerova. She works at the Lahey Hosp. in the department of Neurology in Burlington MA. She said it was experimental as far as my wife, and how she would react to it with the PSP. She said that it works on some and not on others. My impression was that it didn't work on more patients than it did. I remember when my wife had asked me why she was taking it because it wasn't working, and I had sent the Dr an email, she immediately told me to wean her off of it. After I told her that I did see an improvement she said that I should keep her on it, and then almost a year later when I told her about the real improvement in her ability to talk is when she had suggested to try and raise the dosage. I guess my only complaint is that I got the diagnoses, and then when we saw her about a year later she had said that there would come a time when we should think about feeding her with a tube in the stomach. That did not set well with my wife. It is REALLY hard to make an appointment to see her, and she has never taken the time to sit with us to let us know what to expect. In fact when she gave us the diagnoses, all she said was to go home and Google "cure PSP". So that's what I did and printed the Guide on how to care for a patient with PSP.

Like I said earlier, as far as the blood pressure, it is all over the place. When I say that, I guess for the most part it is pretty good, but then it will spike for a day, sometimes less, and then it will drop pretty low for a while, and then stable to the norm I seem to be getting of about 135/88.

Thanks.

Regards,
Larry
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Tue Apr 18, 2017 2:12 pm

Larry, I so understand how you feel right now. When my Mom was first diagnosed it was devastating! At least with Parkinson's and Dementia there was a little hope as far as medications and research. With PSP it seemed as though there was no hope. We were fortunate in that our Neurologist did take the time to sit down with us and explain what PSP was and gave us a lot of information. Even with the information, all I could think about was I was going to lose my Mom and there was absolutely nothing I could do about it. From what you've told us it appears that your wife is progressing quickly (my mom did also). On Christmas Day 2014 she was in the kitchen helping me cook Christmas dinner. November 2015 she was in a wheelchair with 24-hour care at home. We admitted her into the nursing home in July 2016 after a six day hospital stay. Her doctor told us that she wouldn't be able to go home again unless we had 24-hour skilled care. The 24-hour care she had before was a young lady I paid to stay with her 10 hours a day while my Dad was working, my Dad, and me on the weekends.

I wish there were a way to tell you what will happen next or how quickly it will happen, but everyone with PSP progresses differently. To be honest with you I was shocked as how quickly my Mom progressed. We never had the scratching problem, but from my research on PSP I've found that a lot of PSP patients have compulsive behaviors. My Mom had repetative speech, she would say things 2-3 times. She said she knew she was doing it, just couldn't stop. She also lost the use of her left arm and leg before anything else. Her arm has been bent, resting against her chest for over a year now with her hand clinched. It's very stiff and hard to move when we're trying to dress her. This is also normal in PSP.

If there is any advise I could give someone who is having to go through this is don't be afraid to ask for help. If you have family or friends who have volunteered to stay with your wife to give you a break, take them up on it. Don't feel guilty, don't feel like you have to do everything. This disease will wear you out and you're no good to her if you don't take care of yourself. I have seen this first hand with my Dad, his health has been going downhill since my Mom was diagnosed. If you need to hire someone to come in for a few hours a day, do it and don't feel guilty about it. In my heart I would love to be with my Mom all day every day, but I know that physically and emotionally (and financially because I'd have to quit work) I'd never be able to do it.

This website and particularly the forum is a wonderful source of information and comfort for caregivers and family. I was amazed when I first found it and started reading the stories from other members, at how their loved ones symptoms mirrored my Mom's. If you get a chance, read "Last Dance at the Savoy". It's a wonderful and heartfelt book with a lot of information and insight.

In the meantime, you and your wife are in my prayers. Prayer is a powerful thing, I know that's what my Mom is living on right now. And I do have the joy of knowing that one day we will be together again so that gives me more comfort than anything. Take care of you!

DeeDee
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Wed Apr 26, 2017 11:19 am

Something has been happening over the last few months and I'm wondering if anyone else has had this experience. For the past 3-4 months my Mom goes into these deep sleeps, kind of like a coma. She sleeps for hours, even through bed baths and changings, then all of a sudden she wakes up and is alert and vocal. I was at the nursing home all weekend with Momma and she slept most of the time I was there. She barely ate over the weekend and most of last week. She again went into one of her coma-like sleeps. Daddy called me Sunday evening after he left the nursing home and told me that Momma woke up around 4:00 and was wide awake. She ate all of her dinner and drank a boost, then went right back to sleep. She hadn’t urinated all day so they put a catheter in her just to empty her bladder. Daddy told them not to leave it in because of fear of an infection. I got an email Tuesday morning around 10:00 from Shanna, her caregiver, telling me that Momma had woken up and was talking! She asked a couple of questions, and even spoke complete sentences clearly, and then she stopped talking and went back to the groaning sound she always makes. I so wish I could have been there to hear her sweet voice. It has happened a couple times over the last few months after she comes out of one of her deep sleeps. It’s almost like when she wakes up her brain has forgotten she has this terrible disease and she talks for a few minutes, and then her brain tells her that she can’t talk and she stops. Has anyone else had this happen?

DeeDee
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Wed Apr 26, 2017 6:40 pm

Phil did this a couple of times in the months before he died. Never could figure out what had happened that had allowed him to have a brief conversation with our son a few weeks before he died. A precious moment for our son.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Thu Jul 06, 2017 12:33 pm

My heart is breaking! On Tuesday June 20th my Dad passed away after spending two weeks in the hospital with Congestive Heart Failure and Pulmoninary Fibrosis. He had been feeling week and dizzy for a couple days when I took him to the ER. I thought he would be in the hospital for a few days then come home like he always did. The hardest thing I've ever had to do is tell my Mom that Daddy was gone. I can't even imagine what she's going through not being able to even talk out her feelings about this. And I never imagined how very much I would miss my Daddy. He and I were a tag team when it came to taking care of my Mom, now it's just me. I never knew anything could hurt so badly! I just hope he knew how very much I loved him. I know we'll be together again one day and that's the only thing that gets me through each day. Please pray for my Mom, I know her desire is to be with my Dad but I'm certainly not ready to lose her.

DeeDee
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Thu Jul 06, 2017 1:07 pm

Oh DeeDee...... I feel so sorry for you!

And, I'm so sad for the loss of your Dad.

I wish I could give you a huge hug/hold because I know how much you need that right now.
But, given distance, I'll just pray for you and your mother instead.

Kate
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Thu Jul 06, 2017 1:49 pm

Thank you Kate, prayers are felt!
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Robin » Thu Jul 06, 2017 2:45 pm

I'm very sorry for your loss, DeeDee. I hope you can find some way to comfort your mother (and yourself).
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby eplowman » Thu Jul 06, 2017 11:42 pm

Am so sorry for your loss, DeeDee. Keep the precious memories close.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby HelpingDad » Sat Jul 08, 2017 6:25 pm

I am sorry to hear about your dad, you have my deepest condolences.

Ron
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Fri Jul 21, 2017 10:27 am

My Mom has now started her final phase of this awful disease. She has been on oxygen for the last week and hasn't eaten or drank anything since Sunday. Her toes and feet are mottled now. Hospice doesn't believe she'll make it through the weekend. Her desire is to be with my Dad and I don't blame her. I had to tell her Sunday that if she was ready to go it was okay. I've never had to do anything like that before when everything inside of me was yelling don't go! I pray that she goes gently. I know Daddy and her Lord will be waiting for her.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby HelpingDad » Fri Jul 21, 2017 11:04 am

Be with her and talk to her, hold her hand. She knows you are there. Take comfort in the fact she'll be free of this disease and with her husband again.
Ron
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Fri Jul 21, 2017 11:35 am

I can't say it better than Ron. Hugs and prayers for you!

Kate
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Robin » Sun Jul 23, 2017 1:05 pm

Canfieldd2,
I hope your mom's passing is peaceful.
Robin
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby eplowman » Sun Jul 23, 2017 3:16 pm

DeeDee,

Yes, Ron spoke for many of us. Keep the good memories close. They are precious treasures.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Canfieldd2 » Mon Jul 31, 2017 1:51 pm

On Friday night, July 21, 2017 at 11:37pm my Mom went to be with Jesus and Daddy. We were all with her, gathered around her bed, holding her hand when that precious lady took her last breath. My Mom was the strongest woman I’ve ever known. When she left the hospital last July they told us not to expect her to be here more than 3-4 months; that was over a year ago. I saw her battle breast cancer, back surgery, and gallbladder surgery each time coming back as feisty as ever. Even when PSP stole her body from her, she continued to fight. It wasn’t until my Dad passed away a month ago that my Mom gave in to this terrible disease. It’s been a rough month for our family but we’re relying on our Faith, knowing that one day we’ll see them both again and what a reunion that will be. One of my Mom’s favorite songs when she was in the nursing home was “What a day that will be when my Jesus I will see”. I used to play that for her every weekend and we’d both sing along. It’s going to be a hard change for me as I’ve spent every weekend for the past year at the nursing home with my Mom. It seems that I’m going to have a lot of time on my hands on the weekends. We asked all of our family and friends, in lieu of flowers, to make a donation to PSP research. Hopefully one of these days this awful disease will no longer exist.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby HelpingDad » Mon Jul 31, 2017 2:16 pm

You have my deepest condolences. Your mom is at peace now and with her husband.

Ron
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby myownwoman » Tue Aug 01, 2017 10:36 am

My deepest condolences at the passing of your dear Mother.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby Robin » Tue Aug 01, 2017 11:58 am

My condolences on your loss.
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Re: Temporary speech recovery in PSP! Not VitalStim.

Postby grandmakcat » Tue Aug 01, 2017 2:49 pm

I am so sorry. My thoughts and prayers for you and your family for comfort and peace. I don't know how we all get through times like this without the Lord - that song is also one of my favorites and my husband and I used to sing it together in church. Your Mom is now whole with your Dad and yes! We will see them again!
Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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