My wife has been diagnosed by UCSF with PCA...she is 61 and is an incredible woman, Armenian, and an incredible partner and business woman....they have started her on Aricept...we are headed for a two week trip to Russia....just have been to South America, and next year China...we have "moved up life"...we are staying positive. TT
Hi Thompson
I am so sorry to hear that your wife has PCA. Ill health, dementia, many diseases are a wake up call for sure. We suddenly realize life is 'not a rehearsal'. Stepping up life experiences is such a fantastic idea. I know many people who say that their diagnosis has had its positives. You take less for granted and it focuses you on the things that are really important.
It would be great to hear from you both again. Hear about your adventures
Christine
My mother was diagnosed with PCA several years ago. She is now 66 and has been completely bedridden for two years. We believe she has had it for ten years. That is when the vision problems started. She has lost the ability to eat (or desire) and has survived on nutrition shakes for a little over two years. She is on Aricept and Namenda. While we get support through our local Hospice program, no one really understands this disease as they have never heard of it. I watch her slip away every day unable to talk or communicate with us. Thank you for shining a light on this horrible disease.
Hi,
My wife has just been diagnosed with Benson's Syndrome. She is 65. The disease has greatly affected her vision. She can no longer read the newspaper or books. Her vision is OK but she has trouble making out different objects. To her, everything is tilted or moving up and down, like waves or pulsing.
There is very little information available on the web. Her doctors have prescribed Aricept and Namenda as a possible help.
She also suffers from ringing in her ears and extreme dizziness. Her hearing is very good and she has never fallen as a result of the dizziness. An ENT doctor has examined her and determined that the dizziness is not inner ear related. Her condition has progressed and worsened over the last 20 months. She can no longer drive and she is not comfortable when she leaves our house.
I would appreciate any information regarding treatment and/or studies that might be ongoing. We live in South Florida.
Thank you.
Bruce
Hi Bruce
I am so sorry your wife is experiencing the symtoms that result from Benson's syndrome. Treatment is usually with the drugs used in Alzheimer's disease (that she is being prescribed) and visual aids can be helpful. Early treatments for depression, a common experience for people with this type of Alzheimer's, is also advised. Here is a link to some more information that you may find helpful on Benson's syndrome.
I will look for more information for you
Best Wishes
Christine
Hi Bruce
Me again! Here is a link to more information on Google books on Posterior cortical Atrophy that may be of interest to you. Treatment is, to a great degree, about managing her symptoms as they occur. Your wife's symptoms will change as the disease progresses.
I hope people with direct experience will contribute with their comments for you.
Christine
Bruce,
I live in South Florida also and my father was diagnosed with Benson's Syndrome about 4 years ago. He is now 65 and is also taking a combinatoin of namenda and aricept. He is never alone and has become completely dependant on all of us (understandably so). He had been an accountant and owner of his business for about 35 years until he began experiencing symptoms and was forced to stop. He has gotten progressivly worse over the years but we are trying to make the best of our time together. He currently goes to an Easter Seals program (in downtown Miami) twice a week, and he loves it since it gets him out of the house for a bit. If you have any questions, comments or want to share your own insights, let me know. This is a terrible situtation for our loved ones, but just know that there are others close by that know exactly what youre going through.
Stephanie.
Hi there,
My mother is only 55 years old and was diagnosed 5 years ago with PCA when she was only 50 years old. My sister and I are still young I am only 25 and my sister is 30, and we watch are mother slip away a little more each day. It seems like no medication helps slow it down, right now she is on aricept, but that dosnt even seem to help. Does anyone know of diffrent types of treatment to help slow down the process?
Regards,
Melina
Dear Melisa
I am so sorry to hear about your mother. She is very young to have PCA and it must be very upsetting for you and your family.
There is no cure for the disease and little progress has been made in finding drugs that make a real difference in arresting its progress. Aricept has been found to be helpful to some people. Sadly your mother has not found it helpful.
Early treatment for depression is advised. Referral to services for blind people can help her deal in the visual impairments that happen because of the area of the brain affected.
There are some experimental treatments that I know Terry Prattchet has tried. He has not reported any significant improvements. I know of no new treatments.
Sorry I cannot be more positive or offer you any more information
All my best wishes
Christine
Hello,
I was just wondering if any one who has a family member with pca would know if they ever got them tested for heavy metals. I ask this becuase I have consulted a naturalpathic doctor who recently informed me that people who have high contents of heavy metals usually have nurological damage. My mother was tested and she had a high content of heavy metals, and one of the reasons was becuase of her amalgums, which are fillings in her teeth. We are in the process of removing her amalgums as well as all the toxic heavy metals that are in her body. It takes about a year for the toxins of heavy metals to clear out of someones system, but we are hoping that it will slow down and maybe repair some of the damage that has been done.
I have some really interesting articles about heavy metals and the nurological damage it causes if anyone is interested I can e-mail them to you.
Regards,
Melina
Hi Melina,
I know you feel desperate, and for good reason. I've followed these issues myself, as I've always been very open to alternative medicine combined with more traditional methods.
There is a lot of anecdotal information on heavy metals, but I'm not aware of any hard evidence in a case like your mom's.
Feel free to let us know if you see improvement with your mom.
Blessings,
Carol
"it's at least the best form to have. With PCA, the person is left both fluent and coherent, yet memory and visual acuity is gradually lost"
I very much have to disagree. My father was diagnosed a couple of years ago but he has had this diease for awhile without even knowing. Another difference between Alzheimers disease and PCA is that a patient with Alzheimers most likely doesnt even understand whats going on but with PCA the patient is aware of whats happening but they have no control to stop. They feel powerless and frustrated. My father says he would of preferred to have Alzheimers. Also like to point out a lot of times my father is very far from being corherent. Yes they get brief lucid moments but most of the time he is confused and rambles about nonsense. Even his speech is off sometimes, he stutters and says the wrong words and sometimes he cant even talk at all without messing up words in one sentence and hes not even BAD yet. I live with him everyday, i see this everyday.
Hi Desi
Thank you so much for your observations about how your father is experiencing his symptoms of PCA. Terry Pratchett said he believed that PCA, a rare form of Alzheimer's disease, was ‘the best type of Alzheimer's to have’. Your father’s disease, like all types of Alzheimer's, means his motor and cognitive skills are deteriorating over time. It is the realization that things will not, overall, improve that makes it even more heart breaking. It is so distressing for both of you.
Do you think that your father is depressed or do you feel his present stage of the disease accounts for his symptoms? I know other people with PCA do get prescribed medication. It might be worth getting him checked out by his doctor to see what he/she thinks.
I found some comments on PCA, lucidity and the difficulties of being aware of the degeneration that you might like to read. The person also writes about behavioral reactions, anger issues, that their relative experinces. It may help you. It’s on a UK Alzheimer’s Society PCA forum
Please keep in touch. I know it does help others deal with caregiving issues.
All my best wishes to you and your father
Christine
Hi Desi,
I'm so sorry about what you and your father are going through. I've witnessed a smililar situation, and it's heartbreaking.
You are right that when people comprehend his or her cognitive decline its got to be worse than when they are unaware of their condition. Christine mentioned the UK Alzheimer's site for support, which should be helpful. Also, if you go to Alzheimer's Foundation of America, you can ask about support for people with PCA and those who care for them.
It's hard enough to struggle with a cognitive disorder that is widely publicized and at least somewhat understood. You are bound to feel more alone (as I did with my dad) when your loved one has a form of dementia that few people have witnessed.
My heart goes out to you both. Please hang in and get whatever support works for you.
Blessings,
Carol
My wife was diagnosed with pca she is 68 years old.I read all these post and here that it should afect her memory and eye site but no place can I find that say's why she can't walk I have to help her when she dose try and walk if we go anyplace she needs to be in a wheel chair I was just woundering if any one else is haveing walking problems
My Wife was diagnosed with Bensons two years.Everything I read it say's that it affects your vision and speech.My wife has showin some signs of that but the main problem is she has a very hard time walking and haveing a hard time controling her blatter now where can I find anything that says this is supposed to be happening and the doctors have no answers for me I was just woundering if anyone else is haveing the same problem with one of their loved ones.Its breaking my heart to watch her going threw this.I am pretty much on my own dealing with this terrible thing
Hi Ron
I am pleased to hear from you and am sorry to hear that your wife is now experiencing problems with walking. In the early stages of PCA it is visual difficulties and problems with recognition of people and objects that help to contribute to it's diagnosis. These tasks are controlled by the back part of the brain, where the initial damage in PCA occurs. As the disease progresses the brain damage spreads and people develop the typical symptoms of Alzheimer's disease, such as memory loss and confusion.
As in Alzheimer's, the areas of brain affected become more wide spread and balance and walking problems become more evident. Loss of mobility, as you are finding out, cause more problems and the caregiving burden becomes more acute. You need to get some help.
Look into day care that will give you some time off. Do you have any close family members who could help you out?
Ron, contact your local Alzheimer's Association to see what help and support they can offer you. Do you live in the US? I can give you the link to their website that has a link to local chapters.
Christine
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My very good friend I met 63 years ago has been diagnosed with PCA. Never heard of it before, and have read up all I can understand. Can anyone tell me what I can do to help? He lives with his wife about 100 miles away with a very capable but no longer young wife, no children. What practical help can I give? We had a wonderful childhood together, I feel so sorry, I really want to help somehow.
Hi There
Your support in any way will be very helpful to his wife. Contact by visits, over the internet or by phone are great because caregivers can often feel so isolated and alone.
I am sure anything you can do will be appreciated
Christine