My mother had PSP and my dad had Parkinson's. They are both insidious diseases. My mother was lucky to live somewhere with unusually kind and gentle care, never once going into the hospital. My father, on the other hand, was in and out many times. I try not to worry about the fact that Parkinson's has a genetic component and leave each day in the moment.
1
My dad had the Richardson's Syndrome form of PSP, which included unexplained falls, slurred speech, downgaze palsy, and dementia. It is the "classic" form of PSP so a bit easier to diagnosis earlier on. Sadly, like Betty, my dad was mute the last 14 months of his life. That makes communication so challenging!
If you'd like to read about the different forms of PSP, see:
http://www.brainsupportnetwork.org/education/progressive-supranuclear-pa...
The only way to confirm a PSP diagnosis (or the diagnosis for most neurological disorders) is to have the brain examined after death. Our nonprofit, Brain Support Network (www.brainsupportnetwork.org), advocates brain donation and we help PSP, CBD, MSA, DLB, FTD, PD, and other families make these arrangements.
If you'd like to read about the different forms of PSP, see:
http://www.brainsupportnetwork.org/education/progressive-supranuclear-pa...
The only way to confirm a PSP diagnosis (or the diagnosis for most neurological disorders) is to have the brain examined after death. Our nonprofit, Brain Support Network (www.brainsupportnetwork.org), advocates brain donation and we help PSP, CBD, MSA, DLB, FTD, PD, and other families make these arrangements.
3
I'm currently working on a documentary about a famous jazz guitarist, Jeff Golub, who passed away from PSP in January 2015. Unlike the subject of this article, Jeff and his family went through several years without a diagnosis. It wasn't until taking part in the Undiagnosed Disease Program at NIH that Jeff finally got a diagnosis. He passed away 3 months later.
If you're interested in learning more about Jeff or the disease, please visit our website at www.jeffgolubmovie.com.
CurePSP, the organization mentioned at the end of the article, is working to find a cure for PSP and other "prime of life" diseases. Due to my connection with PSP via Jeff Golub, I have also collaborated with CurePSP to create several short videos that help explain the hardships that families face in dealing with these illnesses. You can view them here:
PSP: http://www.psp.org/i-want-to-learn/what-is-psp/
MSA: http://www.psp.org/i-want-to-learn/prime-of-life-brain-disease/968-2/
FTD: http://www.psp.org/i-want-to-learn/prime-of-life-brain-disease/1007-2/
If you're interested in learning more about Jeff or the disease, please visit our website at www.jeffgolubmovie.com.
CurePSP, the organization mentioned at the end of the article, is working to find a cure for PSP and other "prime of life" diseases. Due to my connection with PSP via Jeff Golub, I have also collaborated with CurePSP to create several short videos that help explain the hardships that families face in dealing with these illnesses. You can view them here:
PSP: http://www.psp.org/i-want-to-learn/what-is-psp/
MSA: http://www.psp.org/i-want-to-learn/prime-of-life-brain-disease/968-2/
FTD: http://www.psp.org/i-want-to-learn/prime-of-life-brain-disease/1007-2/
1
I have a client with PSP and have learned a lot about the disease in the past few months. This client is now in hospice care in a facility, where she is being treated very well, and I suspect is developing pneumonia. At a visit with the family yesterday, I had to spell out for them what "progressive" and "incurable" meant in combination--WHY? because the initial consulting doctor who saw them hedged her bets, and told them my client would not die of this disease. While that might be literally accurate, this low-functioning family took the doctor's words at literal value, and are now completely unprepared for my client's passing. So this is a plea to medical professionals--don't whitewash these things--especially in dealing with low-functioning members of society.
2
Thank you for your story. So many of the symptoms and conditions mentioned in the article are similar to those my mother has been experiencing for the last 10 years and yet every attempt we've made at a diagnosis has turned up inconclusive. No one has ever mentioned PSP however. What kind of specialist does one see in order to seek a diagnosis or a rule out for this disease? A Neurologist? A Geneticist? Thank you again for sharing your story.
1
Hi Jenny. I'm sorry to hear about your mom. This is the main reason I wanted to share this story, for the sake of discovery, so fewer people would suffer the anguish of not knowing what was going on or who to talk to. I would recommend a neurologist. The doctor we saw was Dr. Rivka Sachdev at Beth Israel in Manhattan, she is wonderful. People with PSP tend to have trouble moving their eyes downward (and then have trouble with moving them in other directions, later. For more info, watch from 24:21 onward, particularly from 25:45, for related info in this YouTube video: https://www.youtube.com/watch?v=TEhUup1psD4) I hope you can find some of the answers you need from there, and I hope you find the diagnosis you need from a doctor, as well. Hugs.
5
My dad died from psp and his last 10 years were progressively worse for my mom, his caregiver. We had no clue why he developed psp. He did serve an extended stint in ww2 in strange places like amchitka island Alaska. If anyone researching psp is reading these comments that is the best I can offer.
The photo of your mother looked so much like how my mother looked that I knew immediately what the disease you were going to write about was what she had, too: PSP. That stare, that frozen not-smile -- it brought it all back to me in a flash. A heartbreaking end that dragged on for five years.
4
And she is lucky to have you and your sister. Blessings to you all.
5
My heart sank reading this story. My mum received a Parkinson's diagnosis earlier this year & I've had a bad feeling since. I know I shouldn't jump to conclusions, but this article has encouraged me to be more forceful in seeking answers.
I am glad your mum is still with you & that you have time, however long it may be. My warmest wishes.
I am glad your mum is still with you & that you have time, however long it may be. My warmest wishes.
3
Sorry for your mom and that your family has this situation. My dad had normal pressure hydrocephalus which increasingly affected his motor skills and memory over time. I'd estimate what percentage of "dad" he was as this number declined versus the dad I knew. I realized I'd gladly take even 1%, and I did! It's important to love them no matter their condition. Be with her as you have been and I wish her, you and your family the best.
1
Beautifully written article
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Thank you for sharing your experience in such an eloquent and heartfelt way. My father passed away from PSP in 2004 at age 65 after initially being diagnosed with Parkinson's. CurePSP provides tremendous support for patients and caregivers who feel so alone and are searching for information during such a difficult time.
7
Thank you for making an effort to make PSP more public. After three years of a standard Parkinson's Disease diagnosis, at 75 my Mom has received a diagnosis of PSP. I had no idea that a disease could move this fast. We are fortunate that Mom can afford the care that she needs to make life more comfortable, and we are also fortunate that Mom has always lived her life to the fullest and doesn't fear her own death. While exhausting, it is an absolute honor to tend to these loved ones.
12
She (and you) are lucky. My mother has Parkinson's and a variety of other ailments. She is actually doing reasonably well, given her ailments, but she is utterly terrified of death and as a result cannot enjoy even what she can still do. Her life consists largely of being angry that we aren't all spending all our time with her. Yet if she were not so afraid, she could get out and do many things still.
Her fear is real, so I cannot really be angry with her for being so difficult to cope with as she finds it so hard to cope, But it is hard to remember that it is harder for her than it is for us - which means it is very hard for her indeed.
Her fear is real, so I cannot really be angry with her for being so difficult to cope with as she finds it so hard to cope, But it is hard to remember that it is harder for her than it is for us - which means it is very hard for her indeed.
2
My father passed away in 2011, from PSP or maladies related to it. The symptoms, delayed diagnosis, and precipitous decline after about four years of slow onset are remarkably similar to that in the terrific article and the posts here. Tears welled for me reading all of this and I have the deeepest sympathy for all and your afflicted loved ones. A few things I'll add, we first noticed slurred or slowing speech patterns as if inebriated or having 'wet brain' (from long term alcohol addiction), though we knew my father was neither drunk nor an alcoholic. Then the inexplicable loss of balance and occasional falls became more frequent, along with mood swings and for-no-reason agitation and angry outbursts. Adding to the cruelty of the disease (post diagnosis and as the symptoms accelerated) was short term memory loss and, sad and strange, a compulsion to gulp drink and stuff solid food, which the victim cannot control. Most distressing, though, when short memory clicked back in, my dad was fully cofnizant of what was happening to him and very frustrated that he could not move his limbs without help. The counsel to cherish every moment is terrific and I could not agree more.
To the poster asking about statins, yes, my father was prescribed various cholesterol lowering drugs for years, perhaps as long as two decades along with HP control drugs, Even though his bad cholesterol was in the 200-210 range and his BP was occasionally in the high range.
To the poster asking about statins, yes, my father was prescribed various cholesterol lowering drugs for years, perhaps as long as two decades along with HP control drugs, Even though his bad cholesterol was in the 200-210 range and his BP was occasionally in the high range.
11
You wrote "short term memory kicked back in". I moved in to help my Dad who is now bedridden from PSP, over a yr ago and I've seen many psp characteristics come and go. However I haven't heard of this happening from doctors or research. What the sam hill is going on in their brain that symptoms can disappear and if we could figure that out, maybe there's a way to make all the symptoms disappear... some day, some sweet day.
Thanks for this article My dad died of pneumonia as a complication of having PSP about 15 years ago.
During the 1960's my father applied termiticides in our home to combat termites and I wonder if that could have been a contributing factor to him developing PSP.
I do think PSP is far more common than previously thought and it has just been misdiagnosed as Parkinson's and Alzheimer's. I think it warrants more study and trials to see if perhaps there is a connection between environmental factors and developing the disease.
During the 1960's my father applied termiticides in our home to combat termites and I wonder if that could have been a contributing factor to him developing PSP.
I do think PSP is far more common than previously thought and it has just been misdiagnosed as Parkinson's and Alzheimer's. I think it warrants more study and trials to see if perhaps there is a connection between environmental factors and developing the disease.
9
In my ongoing research about my father's PSP for the last year, a possibility I read about more than once was METAL. My dad owned a sheet metal business and worked that field all his life, to include having galvanized poisoning twice. He was a heavy smoker for years and I read that was a possible cause but I only read that from one source. Oh another possibility from a recent study is many PSP sufferers have limited education. Wow ok, my dad was brilliant before psp but did not go to college. That was from a recent study and the idea is there is a connection from lack of formal education to PSP, such as, maybe earning less money prevented eating healthier foods, or something similar, something that's a result of a lack of education. ANd I so fully agree that PSP is very underdiagnosed.
A brief but powerful article, and so many heartbreaking comments. My mother died four months ago from PSP, after getting a diagnosis of PSP about two and a half years earlier. Her decline was fairly steady and slow for 3-4 years, but during the last year accelerated, and when the end came, it came quickly. Fortunately my brother and sister and I were with her during her last hours, for which I'm thankful. My sister, brother-in-law and his sister (plus home hospice care during her final 9 mos.) took such good care of her; my brother and I visited several times a year and providing respite care when we could. It's a terrible thing to see someone you love decline from a degenerative disease that has no treatment/cure, but it's also an chance to give back in the most primal way. Yes, patience and and also humility are so important!
I strongly urge anyone with atypical Parkinson's to go to www.parkinson.org and check "Centers of Excellence" section. Those are clinicians/teams with the greatest training/expertise in Parkinson's Disease and related disorders.
My mother's primary symptoms for several years before her diagnosis were frequent backward falls and double vision. She was diagnosed with early Parkinsonism 3 yrs ago, but my sister and I were unconvinced, and about 6 mos. later the U of FL in Gainesville correctly diagnosed her. Although sad/sobering to get that diagnosis, of course an accurate diagnosis is always best.
I strongly urge anyone with atypical Parkinson's to go to www.parkinson.org and check "Centers of Excellence" section. Those are clinicians/teams with the greatest training/expertise in Parkinson's Disease and related disorders.
My mother's primary symptoms for several years before her diagnosis were frequent backward falls and double vision. She was diagnosed with early Parkinsonism 3 yrs ago, but my sister and I were unconvinced, and about 6 mos. later the U of FL in Gainesville correctly diagnosed her. Although sad/sobering to get that diagnosis, of course an accurate diagnosis is always best.
12
I hadn't thought of it in that terminology, what you said, we need patience and HUMILITY omgosh yes. Taking care of my father, as ONE of his caretakers, has been a most humbling experience for me and I can't begin to imagine how humbling for him. It's too sad to even contemplate. I'm glad you shared here, because somehow I feel like knowing it's about humility will be helpful as I continue to be here for Daddy for as long as need be. And I'm so very sorry about your loss of your mother. It was really sweet how well taken care of she was by her family. Every sufferer should have it so good but I seriously doubt they do, surely not here in the US, in my opinion.
My father had PSP. Took care of him for six years in my home and he went peacefully in my arms at 86. I established a daily routine, always had company for him, kept the TV tuned to comedy serials for entertainment and took him out daily in his wheelchair for a stroll. Friday afternoons were reserved for milkshakes at Dennys. Bless those kind waitresses who would make it a point to stop and chat with him.
17
Your story should help increase awareness and hopefully attention to research about this dreadful disease. My mother passed away from PSP in May of 2012. Your comments are spot on about savoring every moment. While she got diagnosed 4 years before she passed, looking back we know she had symptoms for 8 or 9 years. Like other terminal diseases it's a long gut wrenching experience with a wide range of emotions and challenges. Watching the slow decline of physical and mental capability is brutal.
One pleasant discovery was the power of music. One day in the summer of 2010 I was playing Diana Krall singing the old Gershwin tune S' Wonderful. She hadn't been able to talk much before and suddenly quietly started to sing the words. I cried with happiness.
While there have been recent discoveries related to the sources and causes of PSP, much more study is needed. Thank you for writing this in such a widely read publication. I believe it will help. I wish you peace and grace on your families journey with your Mom.
One pleasant discovery was the power of music. One day in the summer of 2010 I was playing Diana Krall singing the old Gershwin tune S' Wonderful. She hadn't been able to talk much before and suddenly quietly started to sing the words. I cried with happiness.
While there have been recent discoveries related to the sources and causes of PSP, much more study is needed. Thank you for writing this in such a widely read publication. I believe it will help. I wish you peace and grace on your families journey with your Mom.
8
I had never heard of P.S.P. before, but the symptoms remind me of progressive multifocal leukoencephalopathy (PML) caused by an activation of the JC virus, another rare brain disease.
2
We take so much for granted don't we.. it's human nature. We don't even think about all the connections from our bodies to our brains and what it means when any of that gets the least bit out of kilter.
1
One person in my family (male, 71) was recently diagnosed with PSP. He had been taking statins for several years, because of high LDL and low HDL, and that got me thinking. The long-term effects of cholesterol deprivation have never been studied, or at least I cannot find evidence of this. Cholesterol is essential to life, it is the precursor of many vital hormones, it fights inflammation throughout the body, and about half of it is used in the brain. My question is this: what happens when you deprive the brain of much of its protective cholesterol?
I would like to know from the posters on this blog whether any of the people with PSP had been prescribed statins. This much-used medicine is already linked to Parkinson's disease, type 2 diabetes, cognitive problems, and muscle pain and weakness. I have personally observed in my extended family diabetes and muscle pain problems which disappeared when statins were discontinued. As for me (man, 76) I am happy with my high cholesterol and in perfect health.
One last comment: problems with statins are called "side effects". This is a misnomer; the effects are in fact "central" because they are due to insufficient cholesterol in the body.
I would like to know from the posters on this blog whether any of the people with PSP had been prescribed statins. This much-used medicine is already linked to Parkinson's disease, type 2 diabetes, cognitive problems, and muscle pain and weakness. I have personally observed in my extended family diabetes and muscle pain problems which disappeared when statins were discontinued. As for me (man, 76) I am happy with my high cholesterol and in perfect health.
One last comment: problems with statins are called "side effects". This is a misnomer; the effects are in fact "central" because they are due to insufficient cholesterol in the body.
9
My friend was not on statins. She was a slim, healthy fit woman who worked in the healthcare field.
3
My father died of complications of PSP and as far as I know did not take drugs for cholesterol but he had undergone heart surgery and survived several heart attacks 6 or 8 years before signs of illness appeared around age of 59 or 60. (He died at 66 in 1997). There is a Pacific island population where PSP is more common than average and some researchers think it relates to their diet which includes a a large amount of native fruit.Some years ago, researchers believed there was a comme lectionary between the fruit and PSP. Ironically my father ate a lot of citrus in the years after his heart surgery and heart attacks.
2
Thanks Jean.
2
Best wishes to your family. My father had PSP many years ago and lived with it for around 6 years before he passed. It also took many visits to various doctors before he was diagnosed correctly. It is not an easy illness, but he was a good sport until he died, and my mother was able to take care of him at home, with help from nurses who were covered by Medicare (as part of in-home hospice).
3
Dear Sylvia, so terribly sorry to hear of your mother's diagnosis.
My mother was diagnosed with this disease when she was 60. She knew something was wrong long before - five years or so before her diagnosis, she was telling me that she thought that she would die young. I attributed that attitude to depression (both of her parents had recently passed). In those five years, she had a couple of fender-benders, was fired from her job - in spite of decades of excellent reviews - her housekeeping went to the dogs, and she developed that peculiar stare (it was the onset of PSP-related partial blindness). We could not figure out what was wrong until things were quite apparently not right.
After her diagnosis, she went downhill very quickly. She lost the sharpness of her mental faculties, had some bad falls, became incontinent, immobilized, had minor tremors, and began coughing over her food due to inability to swallow. I took care of her, and it was the hardest thing I ever did (it absolutely is NOT like having a baby to care for, people. Don't say that.)
She died three weeks after I had to move her to a care facility. She had an undiagnosed heart condition, and died in her sleep. She still knew us. I think her passing was a blessing.
I wish you, and all who suffer from and with this disease, the fortitude to get through it with grace and love, to protect the sufferer, and to reclaim your life when it's over. I'm sure that your mom would want nothing less for you.
My mother was diagnosed with this disease when she was 60. She knew something was wrong long before - five years or so before her diagnosis, she was telling me that she thought that she would die young. I attributed that attitude to depression (both of her parents had recently passed). In those five years, she had a couple of fender-benders, was fired from her job - in spite of decades of excellent reviews - her housekeeping went to the dogs, and she developed that peculiar stare (it was the onset of PSP-related partial blindness). We could not figure out what was wrong until things were quite apparently not right.
After her diagnosis, she went downhill very quickly. She lost the sharpness of her mental faculties, had some bad falls, became incontinent, immobilized, had minor tremors, and began coughing over her food due to inability to swallow. I took care of her, and it was the hardest thing I ever did (it absolutely is NOT like having a baby to care for, people. Don't say that.)
She died three weeks after I had to move her to a care facility. She had an undiagnosed heart condition, and died in her sleep. She still knew us. I think her passing was a blessing.
I wish you, and all who suffer from and with this disease, the fortitude to get through it with grace and love, to protect the sufferer, and to reclaim your life when it's over. I'm sure that your mom would want nothing less for you.
12
Thank you for writing this. PSP took my stepmother last year. It was several years before she was diagnosed--and those years were the okay years. While it was a relief finally receiving a diagnosis, it was frustrating knowing both that it was incurable and that we would not have any idea of how long she might live. She passed about about 18 months after the diagnosis. I will never forget my father's resolute and stoic care for her--it was exhausting, but showed me what it means to love.
When people would ask, meaning well, how my stepmother was doing, the truthful answer was "Not as well as last time you asked." That was the sad reality of PSP, which never allowed for remissions or "good" days. Her mind stayed keen, but her body gradually betrayed her. I was saddened and relieved when she passed away--PSP's grim progress permitted us, in some fashion, to mourn her and celebrate her and say goodbye to her while she was still alive.
Sylviana, I am so very sorry to know that this is now how things are for your mother and for you. I wish you strength as you care for her--she is lucky to be in the care of someone who obviously loves her so much.
When people would ask, meaning well, how my stepmother was doing, the truthful answer was "Not as well as last time you asked." That was the sad reality of PSP, which never allowed for remissions or "good" days. Her mind stayed keen, but her body gradually betrayed her. I was saddened and relieved when she passed away--PSP's grim progress permitted us, in some fashion, to mourn her and celebrate her and say goodbye to her while she was still alive.
Sylviana, I am so very sorry to know that this is now how things are for your mother and for you. I wish you strength as you care for her--she is lucky to be in the care of someone who obviously loves her so much.
9
My Mom passed in 2000 from Cortico Basal Ganglionic Disorder (CBGD), as the result of a fall. Her neurologist (Columbia Univ) diagnosed her early on and told me, "This is a rare neuro-degenerative condition. Many of the people who die from this die not from the disease per se but from falls related to the disease." I later learned that CBGD has much in common with PSP. (Not the same, but much in common). My mom indeed died 6 years after initial diagnosis, from a fall. One thing we always wondered about then was stem cells. I stopped focusing on therapies after my Mom died but I do understand there is a lot of work going on now where stem cells are extracted from bone marrow and then injected into the brain via protein. It's experimental. It;s expensive, and since it's experimental insurance won't cover it. It's certainly worth researching.
6
Thanks for sharing and raising awareness. I have cared for many patients with PSP. The lack of effective treatment is frustrating for doctor and patients alike.
4
A beautiful story written by a loving daughter about a special mother.
Enjoy your time with her, each and every moment. I cared for my beloved mother with Parkinson's disease for 20 years. It was only in the last 5 years of her life that the illness took her body from her, but it never stole her mind, her dignity or her lust for life. She gave me so much strength, and taught me "to enjoy every precious moment".
I wish your mother, you and your family comfort in the time ahead.
Enjoy your time with her, each and every moment. I cared for my beloved mother with Parkinson's disease for 20 years. It was only in the last 5 years of her life that the illness took her body from her, but it never stole her mind, her dignity or her lust for life. She gave me so much strength, and taught me "to enjoy every precious moment".
I wish your mother, you and your family comfort in the time ahead.
3
There are several progressive neuro-degenerative neurologic syndromes which share these symptoms. They are hard to differentiate, so I tend to be forgiving of "missed diagnoses." And I understand physicians' reluctance to give such diagnoses to patients. One not yet mentioned in these comments is Fragile X Tremor-Ataxia Syndrome (FXTAS), a diagnosis I was assigned following a genetic test done as part of the search for an explanation of my symptoms. Like the other disorders there is no easy diagnosis, no treatment, only decline. It's a hard burden for affected individuals, their families and friends. We should support one another through whatever channels we can find.
5
As difficult as it may be, continue to enjoy your time with her. She is still there with you. My mother had a similar condition, but had to be in a nursing home for 24/7 care. I cherish the time I spent with her even at times that she reverted to her childhood. She would go in and out of living in the present. The wonderful part of it was that she always knew who I was. I am grateful for all of the time I was able to spend with her .
5
Thank you for sharing this intimate piece. I applause the author for ending with a note of appreciation to spend the remaining possible time with her mom. There would definitely be frustration, sadness, helplessness and hopelessness to the patient, as well as and even more so to the family members, which only first-hand experience could tell how unbearable and testing life is. Love and memories are what will carry us forward, and hope will make the author and her family stronger; also let us see how trivial some of our daily problems are. Thanks for sharing first-hand on this rare disease PSP, which I did not know much about.
3
My mother had PSP and as others have mentioned it took a while to get a positive diagnosis. I suspect given the fact that it's untreatable the neuro-opthalmologist who diagnosed it didn't want to tell my parents until he was absolutely certain. I suspected she had PSP a couple years earlier based on her symptoms and after discovering the disease also chose not to tell my parents given there is no treatment that even reliably helps with symptoms - I also didn't want to unnecessarily worry them.
My mother chose to participate in a study at UCLA in the hopes that it might help her or others in the future.
It's a devastating disease and as my Dad was her primary caregiver it also took a substantial toll on his health. She managed to live around six to seven years after the first symptoms, and it was difficult watching the progression, especially the last few years as she lost the ability to walk and talk and could do little more than stand to move to and from a transport chair.
My mother chose to participate in a study at UCLA in the hopes that it might help her or others in the future.
It's a devastating disease and as my Dad was her primary caregiver it also took a substantial toll on his health. She managed to live around six to seven years after the first symptoms, and it was difficult watching the progression, especially the last few years as she lost the ability to walk and talk and could do little more than stand to move to and from a transport chair.
4
My heart goes out to everyone who faces this horrific disease. The loss of my father to PSP is still too painful for me to add up the years he has been gone and I've not consciously been able to recall its name, yet when I saw these initials I knew instantly what this article was about and what it would say.
This was a particularly cruel disease for my father to find himself faced with. His life had always surrounded his physicality. While working on his masters in college, he won major body building contests in the south, earning the title of "Mr. Dixie", which was an impressive title back in the 40's/50's. Into his early 70's he continued to work out every day putting much younger men in the gym to shame; we used to joke that he would still be pumping iron in his 90's. PSP not only took away his speech and motor skills, it robbed him of his passion and identity. But somehow he managed to keep his trademark sense of humor, even if it took a half hour of repeated attempts to convey his joke. When he could no longer make it to the gym, he ordered a Bowflex and continued his workouts until he couldn't.
I began mourning for him years before he died. Since I'd moved out of state over a decade before, we had spoken every week on the phone; losing that ability left a gaping hole in my heart and I missed him fiercely. Our last time on the phone he kept repeating the same sounds, but I couldn't understand what he was saying, and then it registered, he was telling me he loved me.
This was a particularly cruel disease for my father to find himself faced with. His life had always surrounded his physicality. While working on his masters in college, he won major body building contests in the south, earning the title of "Mr. Dixie", which was an impressive title back in the 40's/50's. Into his early 70's he continued to work out every day putting much younger men in the gym to shame; we used to joke that he would still be pumping iron in his 90's. PSP not only took away his speech and motor skills, it robbed him of his passion and identity. But somehow he managed to keep his trademark sense of humor, even if it took a half hour of repeated attempts to convey his joke. When he could no longer make it to the gym, he ordered a Bowflex and continued his workouts until he couldn't.
I began mourning for him years before he died. Since I'd moved out of state over a decade before, we had spoken every week on the phone; losing that ability left a gaping hole in my heart and I missed him fiercely. Our last time on the phone he kept repeating the same sounds, but I couldn't understand what he was saying, and then it registered, he was telling me he loved me.
15
You moved me to tears. I'm SO sorry for your loss. My Daddy is still here but bedridden and etc. I can relate to 1/2 hour of attempts for him to tell his joke. And of course your Dad was saying he loved you. How ideal for those to be his last spoken words to you.
My father had PSP and died 15 years ago. It took 4 years from the onset of symptoms before we got a diagnosis. He died two years later. Very difficult disease to deal with. My father steadily declined. No plateau. We always felt behind.
7
The clarity the writer offers of enjoying her mother as much as she can is beautiful and hurts me to think how few of us enjoy our mothers for themselves let alone offer them the comfort they so generously gave us.
9
Indeed, it's an honor to help my dear father in his last time on this Earth for one reason because I was just 16, she 34 when Mama died of aggressive sudden cancer. So in a weird twisted way, it's cathartic for me to help my dad now, and simultaneously the hardest thing I've ever done.
Good luck folks.As they say in Tagalog- "hinahangad ko ang iyong tagumpay."
The falling is the scary thing. I have MS and a lot of the symptoms are very similar. A heart rending and heart warming story. Life is still worth living. Keep on fighting... endure and love.
The falling is the scary thing. I have MS and a lot of the symptoms are very similar. A heart rending and heart warming story. Life is still worth living. Keep on fighting... endure and love.
15
My dad was initially diagnosed with Parkinson's because of the trembling and was prescribed sinemet for many years. It was only recently that I brought him to see another doctor that he was diagnosed with PSP. He is on feeding tube and frequently dislodges it so folks at home have to stay awake all night to watch over him. My two big questions are...Is PSP an extension of PD? Would it be "treated" differently if he was correctly diagnosed on day one? I sympathize with all the people affected by this disease and also the care givers who must be under tremendous stress for providing care 24-7.
6
Here is what I know and it's not much but PSP is a ParkinsonISM, whatever that means, it may only mean there are many same or similar characteristics. So little is really known about psp. And if he'd been correctly diagnosed from Day One, sadly not a darn thing would be better about his medical treatment because there IS no treatment, zero. Even the meds that help for Parkinson's don't help slow down Psp. I mean, symptoms can sometimes be helped with meds but nothing helps stop the brutal progression of psp.
Hi Chan, sorry for the long delay. Dr. Alex Klein at CurePSP, who was not available to answer right away, has provided this response below. (Sheila, who responded much sooner, is absolutely correct.)
Sinemet has helped, in my humble opinion and experience, keep my mom alert and it improves her response time. Thinking of you and your dad - and of course of everyone else in this thread - and hoping everyone can find the solutions needed. It is not easy. Thank you all for sharing your stories.
"No, PSP is not an extension of PD, but a separate disease. It shares many symptoms with PD (hence the frequent misdiagnosis), but PSP is much faster progressing, more severe, and has much more disabling and cognitive impairing components.
"The treatment for a PSP patient would have been different in a sense that the medication would have been stopped earlier as it most probably had not been effective anyway. Saying that, the continued PD therapy did not harm the patient, nor did it accelerate or slow down the disease. Current PSP therapy is purely symptomatic and can only improve the quality of life by symptom management, but not by curing or improving the disease."
Sinemet has helped, in my humble opinion and experience, keep my mom alert and it improves her response time. Thinking of you and your dad - and of course of everyone else in this thread - and hoping everyone can find the solutions needed. It is not easy. Thank you all for sharing your stories.
"No, PSP is not an extension of PD, but a separate disease. It shares many symptoms with PD (hence the frequent misdiagnosis), but PSP is much faster progressing, more severe, and has much more disabling and cognitive impairing components.
"The treatment for a PSP patient would have been different in a sense that the medication would have been stopped earlier as it most probably had not been effective anyway. Saying that, the continued PD therapy did not harm the patient, nor did it accelerate or slow down the disease. Current PSP therapy is purely symptomatic and can only improve the quality of life by symptom management, but not by curing or improving the disease."
My mom was diagnosed with PSP a few years ago. The slow steady dilapidation of her mind has been the worst of it. She had the eloquence of a fine quill that cut and crafted with scalpel precision. Her mobility and speech are mostly lost. But cognition and spirit lingers still. Love you mom.
14
That was beautiful, and so sad. I'm very sorry about your Mom.. and my Dad and everyone here. Are you a writer? because that was TRULY some fine poignant writing.
This had me in tears. We are caring for my mother right now who is in the late stages of PSP. Like so many others who have commented, she went through countless neurologists before she finally got a diagnosis. The disease is particularly cruel in the way it robs you of life while living you still alive. The element of the Sylvia's story that most affected me was how the parent becomes the child. All the affection and care that our mother showed to us as children in the little things she did for us, we now have to do for her. Her joy in life comes when her grandchildren bounce into her bed and cuddle up with her. Her face lights up, as much as i can.
9
Hi Sylvia, my name is Kelly, and my aunt was diagnosed with PSP now almost 16 years ago. She fought the disease for 10 years before succumbing, and passed away in 2009. She was wrongly diagnosed with both Alzheimer's and Parkinson's, and her decline was heartbreaking to us all. Finding any information about the disease was so difficult, especially in the early years which were somewhat pre-internet. I wish so much that our health care system would find some means to fund research into PSP - even though it evidently effects so few people, its consequences are so devastating. I send all of my thoughts and prayers to your family, to cherish the time, to find strength, and to love. With heartfelt encouragement, Kelly
14
My dad had PSP. The last 6-9 months of his life were the worst. Do what you can to enable your loved one as much as practical. That includes installing walk railings, bath/shower rails, lift chair and lift bed, and a bidet. Emotionally, spend as much time as you can with them. It is a war that the whole family will ultimately lose, but the family can decide just what the end of life experience will be for their loved one. That's the difference that can be made.
20
I am sorry for your mom but glad you still have time with her. Her symptoms are similar to ALS, which I have. My speech/voice are almost gone and walking weakly with a walker is getting more difficult. Not being able to swallow easily and loss of my tongue's strength are very frustrating.
All the best to you - the photo of you together is beautiful.
All the best to you - the photo of you together is beautiful.
35
Bless your heart. Thanks for sharing that and just want to say I prayed for you.
1
Prayers & positive thoughts to all in this situation.
I have a question I am surprised by all of these comments if this condition is so rare?
I have a question I am surprised by all of these comments if this condition is so rare?
11
The comments are coming from several states--so don't be surprised by the number. I have a friend in her mid-60/s in Chicago who was diagnosed a over year ago. It suddenly explained why she had suddenly been in six driving accidents and then fallen down stairs in the previous year. She is now in assisted living.
5
I agree Jennifer! I believe it's misdiagnosed and there's much more of it than we know. My daughter has worked in one nursing home with about 34 patients, while she's in college to be a doctor and of those 34 one did have psp. I just read the odds of getting it and it was like, 1 in 100,000 (or thereabouts) but it seems like that number (one) is much too low!!
About 15 years ago I was called in by Kessler Rehab hospital in NJ to help a man who was diagnosed with PSP, a disease had never heard of, who wanted help to bring greater awareness of this dreaded disease. When i met Dudley Moore that day he was a very dynamic and handsome man in his early sixties at the time, perfectly articulate and clear headed. We worked tougher over the next months while he did major media interviews, but he sadly deteriorated quickly with little treatment available to halt the rapid advance of the Parkinsonian -like disease. I was struck by his dignity, and concern for others, and the generosity of the two people, musicians and fans, who took care of him in their home join NJ as he declined. He died with these lovely people around him, but few others.
Thank god for Ms. Rupani-Smith and the love for her mom.
Lonnie Soury
Thank god for Ms. Rupani-Smith and the love for her mom.
Lonnie Soury
40
FWIW, I have a friend who's a Board Certified Neurologist. This, ALS, Pick's Disease, etc., are, I suppose, his stock and trade. I never want to visit him. They're ALL bad.
Thanks for the article. I'm glad to have my problems.
Thanks for the article. I'm glad to have my problems.
13
Sylvia: I am sorry to hear of your mother's decline and loss. My mom died about 11 years ago and suffered from PSP. It is a horrible disease and I remember her falls distinctly - some were absolutely horrible. I always thought it brave of her to recover from one and continue on walking, walking up stairs, and trying to go about her day. Then - when she became very sick - she was all the more brave.
Thank you for sharing your story and for raising awareness of PSP.
Thank you for sharing your story and for raising awareness of PSP.
19
A magnificent story of a miraculous bond between mother and daughter, graced by spiritual endorphins, not to mention love.
29
My mom passed last year from PSP. She was diagnosed with vertigo for several years, and it took a number of neurologists to finally get the diagnosis. Early diagnosis is very tough. It's a very difficult disease to have. Mom's mental state stayed pretty sharp, but she could do nothing for herself, and could hardly communicate at all by the end. Luckily she had a great hospice doc. We were afraid it would be a horrible death, but it was quite peaceful. Not a disease I'd wish on my worst enemy, though.
25
Thank you so much for your article Sylvia. My own mother suffered from this disease and passed last year at only 70. We were initially annoyed and embarrassed by her behavior because we couldn't get a diagnosis. Even a trip to the Mayo clinic proved fruitless. In the end, my mother chose to forgoe the placement of a feeding tube. With the lack of food and water, she was put into hospice and passed within a few days. I find it most painful that she couldn't really communicate with us for probably a year before she died. My condolences to you and your family.
3
Thank you for your story.
It would seem more and more children are left in the position of taking care of their parents. I was left in a similar instance with me mum having Alzheimers.
I am not sure what is worse; Being trapped in a body that does not function while still fully cognizant of your surroundings ( or ) just losing all memory in a fully functioning body.
Be well.
It would seem more and more children are left in the position of taking care of their parents. I was left in a similar instance with me mum having Alzheimers.
I am not sure what is worse; Being trapped in a body that does not function while still fully cognizant of your surroundings ( or ) just losing all memory in a fully functioning body.
Be well.
53
Dear FunkyIrishman,
My condolences about your mom. Personally, I think it's worse to be fully functioning mentally, trapped in an unresponsive body, than to have one's mind go. I saw two grandmothers go the latter way, and they didn't really know what was going on in the end, nor remember things day-to-day; seemed easier on them. I saw two grandfathers go the former way, their bodies breaking down when their minds were still their own, and they both opted out at the end, just refused to keep eating; they didn't want to live like that.
The prognosis for my dad is even worse though, I think. With FTD, the end stage is losing all sight and hearing, and short-term memory, but not long-term. He'd be waking up every day blind, deaf, and not knowing why. I am fervently hoping that he doesn't make it to that stage.
My condolences about your mom. Personally, I think it's worse to be fully functioning mentally, trapped in an unresponsive body, than to have one's mind go. I saw two grandmothers go the latter way, and they didn't really know what was going on in the end, nor remember things day-to-day; seemed easier on them. I saw two grandfathers go the former way, their bodies breaking down when their minds were still their own, and they both opted out at the end, just refused to keep eating; they didn't want to live like that.
The prognosis for my dad is even worse though, I think. With FTD, the end stage is losing all sight and hearing, and short-term memory, but not long-term. He'd be waking up every day blind, deaf, and not knowing why. I am fervently hoping that he doesn't make it to that stage.
19
@Dan
Thank you SIr. I would offer the same to you and yours.
Of course, I would not want it to be either way, but I think you are right and agree. Perhaps the only silver lining in all of this ( barring a cure of course ) would be that more people\families plan ahead for end of life matters. ( especially since medical breakthroughs are keeping us alive even in these states )
Again, be well.
Thank you SIr. I would offer the same to you and yours.
Of course, I would not want it to be either way, but I think you are right and agree. Perhaps the only silver lining in all of this ( barring a cure of course ) would be that more people\families plan ahead for end of life matters. ( especially since medical breakthroughs are keeping us alive even in these states )
Again, be well.
4
I've said the same things many times. My mother has PSP, and I have an aunt who has had Alzheimers for years. And I don't know which is worse. In many ways, I suppose my cousins feel that they've lost their mother years ago, and tend to her body. My mother is still present - her mind is there. But her body has abandoned her completely. And we do our best to tend to her. It's tough either way.
4
Dear Sylvia,
Sorry about your mom. I am from Brazil and lost my dad to PSP 2 months ago. We also had problems with his diagnosis at first. Most doctors thought he had Parkinson. Sometimes I wonder if PSP is really as rare as it is claimed, or if it is just because it's difficult to diagnose it. Anyway, thank you very much for calling people's attention to PSP. I have a blog, a page and a group on Facebook in Portuguese to help share the little information I find online (which is usually in English) with other Brazilians who happen to have someone in their families with PSP. I believe it's very important to raise awareness about PSP.
Sorry about your mom. I am from Brazil and lost my dad to PSP 2 months ago. We also had problems with his diagnosis at first. Most doctors thought he had Parkinson. Sometimes I wonder if PSP is really as rare as it is claimed, or if it is just because it's difficult to diagnose it. Anyway, thank you very much for calling people's attention to PSP. I have a blog, a page and a group on Facebook in Portuguese to help share the little information I find online (which is usually in English) with other Brazilians who happen to have someone in their families with PSP. I believe it's very important to raise awareness about PSP.
39
Fabiane, thank you so much for making that statement about PSP being rare. I agree with you. There's a strong possibility it is not rare at all, but grossly misdiagnosed. That is my biggest fear. I'm sorry to hear about your dad, and thank you so much for raising awareness as well.
22
This sounds similar to what I experienced with my mom who likely was suffering from corticobasal syndrome (never formally diagnosed). None of the treatments were especially effective. Watching her slowly lose her independence over the years was excruciatingly painful. My heart goes out to all that are affected by these terrible neurological conditions.
11
Two years ago we were old that my mom "probably" had Alzheimers. This made no sense to us as her symptoms were 90% physical and more aligned with Parkinson's. We were frustrated and completely unsatisfied with the care she was received from her Neurologist. She was ultimately diagnosed within 5 minutes by a Resident at Northwestern in Chicago with Corticobasal Degeneration Syndrome. As there is no cure she is on a medication to control her tremors, and a strict regimen of physical therapy. We'll soon be adding on Occupational and Speech therapies.
My dad has become her primary caregiver with support from homecare nurses.
I'm curious to know if your mom was put on any experimental meds.
This disease, like PSP, Parkinson's, and Alzheimer's, has stolen my mom's independence and completely broken my heart and spirit.
My dad has become her primary caregiver with support from homecare nurses.
I'm curious to know if your mom was put on any experimental meds.
This disease, like PSP, Parkinson's, and Alzheimer's, has stolen my mom's independence and completely broken my heart and spirit.
9
I'm sorry for your family's burden, and congratulations to you for meeting it with love and sympathy. That's the best we can do. It's sad though, to read of yet another example of the many frustrated by medicine. Yet another example of going to dozens of doctors, including specialists, who do more harm than good. This is the experience of too many people with too many different diseases, not all of them rare.
I know personally, because for 17 years, I've had a chronic disease borne by millions of Americans, and have had mis-diagnoses and mis-treatments one after the other. (Don't even ask about health insurance!)
Thanks to you for writing, and thanks to the NYT for airing this experience. There are fine associations for various diseases, advocating for change. But it must also help to hear these individual voices. May it do some good.
I know personally, because for 17 years, I've had a chronic disease borne by millions of Americans, and have had mis-diagnoses and mis-treatments one after the other. (Don't even ask about health insurance!)
Thanks to you for writing, and thanks to the NYT for airing this experience. There are fine associations for various diseases, advocating for change. But it must also help to hear these individual voices. May it do some good.
21
These are all excellent comments, but I would add one more based on my father's experience with PSP. Because of the relentless nature of this disease and the way that it robs the person of control over their body and the ability to communicate, it is extremely important to discuss with your loved ones what their wishes are for the end of their lives. For example, treatments like feeding tubes are often suggested when a person cannot swallow food any longer. For some people, that is an acceptable way to extend their life; others do not wish to prolong their life in that fashion. There is no right or wrong -- but it is critical to discuss and understand their choices and the consequences that follow.
106
Very well said.
21
My aunt had PSP. The thing about feeding tubes...people reject the idea when it's far enough in the future to be only theoretical, but when the time approaches that it might be a way to prolong existence, however diminished, even the patient may second-guess the earlier decision. This illness, much like ALS in too many ways, is difficult to face. My sympathies, and empathy, go out to all who are challenged this way.
14
This is probably the most important thing for anyone or any family dealing with PSP. Get the medical directives in order, and be absolutely clear on what you want your end of life care to be like. And have copies of it everywhere, and ready to hand.
1
My father suffered from PSP long before we figured out exactly what he had. He was originally diagnosed with Frontotemporal Dementia but all the symptoms didn't jive. After googling for hours and hours at a time I finally picked up on PSP and it fit him like a glove. It was only natural - and a fitting tribute - to donate his brain to PSP after he passed. So now I can say proudly that my dad left his brain to science. RIP Rex.
51
Sylvia, my heart goes out to you and everyone who is affected--directly or indirectly--by PSP. It is a terrifying diagnosis indeed.
My mother--like yours--took a few years to get a diagnosis. Then she did something unusual: she refused to let this disease take her. After a lot of reflection and discussion with those who loved her, she ended her life about a year after her diagnosis by refusing food and water. I wrote an essay about the experience (see MORE magazine, "The Good Daughter"). I understood and sympathized with her choice, but still.... It's been seven years now and I still miss her and feel cheated. She was a wise and spirited woman who would have lived many more healthy years if this disease hadn't taken her.
My mother--like yours--took a few years to get a diagnosis. Then she did something unusual: she refused to let this disease take her. After a lot of reflection and discussion with those who loved her, she ended her life about a year after her diagnosis by refusing food and water. I wrote an essay about the experience (see MORE magazine, "The Good Daughter"). I understood and sympathized with her choice, but still.... It's been seven years now and I still miss her and feel cheated. She was a wise and spirited woman who would have lived many more healthy years if this disease hadn't taken her.
37
FYI. The article "The Good Daughter" is no longer available on More magazine's website, not even a cached version when you do a Google search for it. :(
I've often wondered if that isn't the best choice with PSP. It's a brave and clear eyed decision - and frankly, the one that I would take. But my mother who is suffering with PSP now does get moments of joy, even in her diminished state. For her, those are worth living for. Everyone faces this last journey in their own way I suppose.
1
My father was diagnosed with PSP after he could no longer walk and had trouble swallowing. He had just had his 90th birthday. He stayed in skilled nursing until the month before his 91st birthday, when he passed away from complications brought on by PSP (pneumonia from aspirating his food and a urinary tract infection brought on by incontinence). My mother and I sat together with him until he passed, and my mother said she was mostly relieved at first because he was not struggling any more. She just had her 91st birthday and she says she is very lonely and misses her husband a lot, but she knows he was suffering so much at the end that she welcomed that outcome. Luckily in my dad's case he did not lose the ability to speak and he remembered us and told all the staff many stories about his childhood on a farm in central Ohio. But is was not easy for me as the oldest child not to be able to do any more for him than we did. So little is known about PSP that even getting a diagnosis is not easy as not all physicians recognize the symptoms.
43
It is a horrible, horrible disease. It kills excruciatingly slowly, but inexorably, as the person loses physical ability, then self and personality. I watched my mother's persona slowly disappear even as her physical body continued to suffer, for nine years; and I will always wonder if her mind was still agonizingly conscious of what was happening to her after she lost the ability to speak and seemed not to be fully aware of her surroundings. It is a terrifying diagnosis.
30
My mom died of PSP too and everything you write is true. It started with slight confusion, incoordination, and emotional flatness about 8 years before she died and 5 year before the diagnosis. My mom's dementia was spotty. There were islands of cognition that remained until the end, such as being able to laugh at a joke even when she could no longer talk. I agree with another reader that all you can do is try to make the most of the pleasures that can be enjoyed and then focus on comfort at the end.
10
My mother suffered with this terrible disease, which was misdiagnosed as Parkinson's for 17 years. It saddens me to see that all these years later there is still no effective treatment.
23
Thank you for sharing your loving tribute to your mother. Educating others about this disease helps all of us who've had to cope with it.
24
My grandmother lived with this disease for, if memory serves correctly, over 10 years. It began with a fall and and a hospitalization. I remember when I asked her why or how she fell, she was not sure but just described it as feeling "weak" when it happened. Post recovery one of the most definitive things I noticed about her was that her love of engagement and conversation diminished slowly and later began to pick up speed. She never quite seemed her old engaged and cheerful self. My grandmother was eventually diagnosed correctly with this disease which began to affect her ability to swallow food, often times causing her to choke. Eventually a feeding tube was surgically placed to avoid having her choke to death. I remember clearly when I would often visit her that she had a particular facial expression or stare which was uncharacteristic of her normal jovial self. Eventually she succumbed to the disease after a long period of suffering under its clutches. I can only hope that her family brought her some measure of happiness while she suffered from it. I hope that medical advances are in the pipeline to prevent or reduce the suffering from this cruel disease.
24
I am so glad to see this story here. We lost my father nearly four months ago to PSP, though it was a Parkinsons diagnosis for many years prior. I wish we'd known sooner, as he died a month after the correct diagnosis. I would give anything to back six years and better understand the symptoms. I would give anything to curl up in bed with him and comfort him, understanding that was all so much worse than we suspected. To have had the correct diagnosis and to have better understood PSP and what was to come would have dramatically changed all of our lives and his suffering.
26
I'm fairly sure my friend's mother died of this disease. Hers was a long slow decline. Thanks for writing about your mother and your family's experience. I hope your article helps others families with loved ones dealing with PSP.
25
Dear Ms. Rupani-Smith,
Thanks for this article, and I completely sympathize, as I'm in a similar situation. My dad has frontotemporal dementia, similar to P.S.P. in that it's a degenerative brain disease with no treatment and no cure. Also it gets misdiagnosed a lot.
It's tough seeing my dad degenerate over the years from this. He was a supreme court judge, now he barely says more than four words in a row, and never initiates conversations.
There aren't really any silver linings to these incurable degenerative diseases, except that the loved ones are still around for awhile, it's not a sudden and unexpected death. But there's really no hope to be held out for the victims and their families, no miracle cures will arrive soon, they can't fight the deterioration.
So I guess my only advice is, spend what time you can with your mom, while you can. Try to make her comfortable, try to get her to smile. And brace yourself for what's coming.
OK I thought of one silver lining to this kind of thing. When the victim finally passes away from the incurable disease, we will be able to look at it as a reprieve for them from the prison of their symptoms. Better than the death of a loved one being a stunning surprise and cutting their lifespan way too short.
Thanks for this article, and I completely sympathize, as I'm in a similar situation. My dad has frontotemporal dementia, similar to P.S.P. in that it's a degenerative brain disease with no treatment and no cure. Also it gets misdiagnosed a lot.
It's tough seeing my dad degenerate over the years from this. He was a supreme court judge, now he barely says more than four words in a row, and never initiates conversations.
There aren't really any silver linings to these incurable degenerative diseases, except that the loved ones are still around for awhile, it's not a sudden and unexpected death. But there's really no hope to be held out for the victims and their families, no miracle cures will arrive soon, they can't fight the deterioration.
So I guess my only advice is, spend what time you can with your mom, while you can. Try to make her comfortable, try to get her to smile. And brace yourself for what's coming.
OK I thought of one silver lining to this kind of thing. When the victim finally passes away from the incurable disease, we will be able to look at it as a reprieve for them from the prison of their symptoms. Better than the death of a loved one being a stunning surprise and cutting their lifespan way too short.
41
I think, too, that eventually one is able to again remember them as they were before the disease struck them, rather than only remembering them as something other than their true selves.
15
Thank you StevenZ, I hope so.
My husband, was misdiagnosed by a number of neurologists who were considered experts in the field of motor disorders. One even went so far as irmplanting a DBS device on the presumption of Parkinson's. Once the PSP diagnosis was made and I read the NINDS description, it was hard to believe that Board Certified neurologists who had examined and tested my husband many times over a number of years could have missed the correct diagnosis for
so long.
so long.
38
I keep reading here about missed or wrong diagnosis - I'm not a medical professional, and yet a Google Search where I put in the problem with vertical eye movement symptom, and motor neuron disease (this much the various doctors who examined her and also didn't diagnose PSP, knew), up popped Progressive Supranuclear Palsy - that symptom is one of the unique characteristics of this particular MND - I just knew that's what she most likely had, and much later the Doctors diagnosed PSP. What I found, was the rapid race to keep up with the pile-up of loss after loss, and trying to find methods or machinery to help. I even read about Anticipatory Grief, as it is a specific type of grief.
1
Sylvia, thanks so much for sharing your story. We lost my Dad to PSP a couple of years ago. We went through many doctors, and mistaken diagnosis's over the years, but sadly found there is no real treatment for this devastating disease, which only added to the family's sadness. Yes, love, care and finding a bit of happiness where possible is the best way to help loved ones with the awfully cruel illness.
19
It is indeed difficult for everyone, when a caring and loving mom, then endures such hardships, and I understand the writer's anguish! My mom fortunately waited till she was just past ninety eight to develop a significant health problem!
Before that she was an incredibly independent and vital woman! When she did become really ill at ninety nine, it was me, her last born son, who willingly, essentially cared for her...But is it me, or have I noticed that all these stories of heartbreak in the Times, are written by females, as if it is the women who are always their for their mom's (or for that matter, dad's!)? That's hogwash.
Before that she was an incredibly independent and vital woman! When she did become really ill at ninety nine, it was me, her last born son, who willingly, essentially cared for her...But is it me, or have I noticed that all these stories of heartbreak in the Times, are written by females, as if it is the women who are always their for their mom's (or for that matter, dad's!)? That's hogwash.
11
Yes, your observation is correct. Women are hands down statistically more likely to be caregivers.
25
You are indeed fortunate, to have a healthy and vibrant Mom up to 99. Same with my m-i-law, up to age 100. At 100 & 6 mos., the wheels came off pretty quickly --and mostly mercifully -- over a course of 3 weeks. The prior 4 mos. or so had a few extra challenges, but it was really darn smooth until that last 3 weeks. She, and we, her family were so lucky and blessed on this count. 100 solid years vs. 3 lousy weeks. I think that is what we would all choose, but we could.
Good luck to you and your Mom! Being the 'good son,' tho not unheard of, is indeed a rarer situation. You will be glad you did this for -- and with -- her.
Good luck to you and your Mom! Being the 'good son,' tho not unheard of, is indeed a rarer situation. You will be glad you did this for -- and with -- her.
15
In 1994 my mother received a definitive diagnosis of progressive supranuclear palsy. She had seen numerous MDs in three cities over 18 months to get to the diagnosis. From the time of her first clear symptoms (judgment, gait, neuromotor in her throat), she lived ten years. She greeted new grandchildren, kept her great dry wit, could remember anything. In the last year of ehr life, I would put my head down on her bed and place her hand on my cheek. That was good for both of us.
We were told clearly that the disease runs in families, which was no surprise as, in the 1960s, our maternal grandmother had the exact same trajectory of the exact same symptoms, just without a name to fit the diagnosis.
We were also told that the condition falls under Parkinsonism, but is much less treatable than other conditions under that umbrella.
As a note, our mother's symptoms were improved somewhat with medication. Her combativeness and impaired judgment improved markedly.
Important to remember that even when speech and expression fail, your loved one has much to communicate, and understands everything.
We were told clearly that the disease runs in families, which was no surprise as, in the 1960s, our maternal grandmother had the exact same trajectory of the exact same symptoms, just without a name to fit the diagnosis.
We were also told that the condition falls under Parkinsonism, but is much less treatable than other conditions under that umbrella.
As a note, our mother's symptoms were improved somewhat with medication. Her combativeness and impaired judgment improved markedly.
Important to remember that even when speech and expression fail, your loved one has much to communicate, and understands everything.
49
Your last sentence is so important, Grey Lady.
I think readers would be interested to know which medications helped your mother (and which symptoms were alleviated), if you're willing to share...
I think readers would be interested to know which medications helped your mother (and which symptoms were alleviated), if you're willing to share...
7
I'm surprised reading here "We were told clearly that the disease runs in families", as I was given different info. My Mother died from PSP in 2007. Her Partner who she assigned to be in charge PRIOR to her death, refused to cooperate with my wishes to donate her brain for well needed research (wouldn't have altered her outer appearance). I had to speak to a Lawyer who advised that it would be a dramatic act to put into place in the hospice to rush after she died, with a window of opportunity to secure the brain. PSP Lab explained that it could be difficult to make the pick-up and transport possible, but they told me to not be too worried about it being inherited in the family, as research has shown that at her age of onset - she died after about 5 years at age 74, at her age is not related to it being in the family. When I traveled from the CA to visit her in her advanced disease process, where she no longer could create art (she was an award winning artist), could no longer type on the computer, or read, had long lost the ability to talk, and had a feeding tube, her Doctor communicated that she wanted to die. I had the desire to take her to Switzerland - my family and I were living in CA and ironically not in OR yet - and had I known OR permits Assisted Dying, I would have tried to get her to OR. She needed a release, she wanted a release. She wasn't able to have Assisted Dying, which was wrong, she had a miserable and angry death. Every state should make it possible.
4
As a physical therapist, I've worked with several clients afflicted with this cruel disease. It robs them of their physical self, excruciatingly slowly. It is difficult to diagnose because it is so rare (most people think it is parkinsons).
Thank you for bringing PSP to the attention of the masses. And as Enid said, the support your family provides is wonderful.
Thank you for bringing PSP to the attention of the masses. And as Enid said, the support your family provides is wonderful.
40
My mother also had PSP. Unfortunately she was not diagnosed until very late by a doc who had not seen it in many years. The give away was the eye movements and the weird stare. PSP can also cause personality changes and hers were severe during the last couple of years. Her memory and intellect were intact but she became almost impossible to deal with. Not until we got the diagnosis and Googled it did we find out these changes are part of the constellation of symptoms. It would have been helpful to know it was part of a disease process, treatment or no. My sister and I are both RNs who have work with many psych and neurologically impaired people. Neither of us had ever heard of PSP, as was apparently the case with the slew of doctors who saw her over the years and kept blaming pain meds, anti-depressants, even too much Tylenol. MD education is definitely needed!
68
A friend first lost her voice. We all thought it was laryngitis. Then she couldn't swallow. She was diagnosed with PSP. It went downhill very quickly after that. I volunteered a shift. Her husband was having an affair and she knew it. It was very upsetting and sad.
34
My heart goes out to you, your mother, and your family. PSP is hard on the whole family, but I'm so glad to see your family has come together to optimize your mother's quality of life. My mother became symptomatic in 2003 at the age of 66, was finally correctly diagnosed in 2005, and passed away in 2012. Though the deterioration is unrelenting, I'm so very grateful to have had that time with my mother. In the end, she decided to donate her brain to the CurePSP brain bank, which confirmed the diagnosis post-mortem. And we hope her contribution helps everyone dealing with this disease.
78
Heartbreaking. Thanks for sharing your experience and best wishes to you and your family. Is there any information on the causes of this illness? Genetic? Infectious? Mechanical?
31
thank you for reading. Sadly there is no known cause for PSP, and it is not known to be genetic or infectious. The CurePSP web site details all it knows about the disease and its commonalities with other brain conditions, here: http://www.psp.org/i-want-to-learn/faq/. Many studies have been conducted, but it is very hard to do testing as it is so hard to detect in its earlier stages, and when it is detected, it is often too late to do any studies.
48
Thank you for sharing your story and the valuable resources to learn more.
My father was diagnosed in June 2014 and as he progresses hearing stories like yours and the readers commenting are helpful and appreciated!
My father was diagnosed in June 2014 and as he progresses hearing stories like yours and the readers commenting are helpful and appreciated!
6
Unfortunately, cause is unknown.
2
thank you for calling attention to this disease, Sylvia. your mother, despite this difficult diagnoses, is fortunate to have the support of such a devoted and capable family.
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