After a year+ of appointments and assorted tests, I am taking my 75 year old mom to meet with a neurologist tomorrow. (Tues, Dec 14)

Based on comments and info provided during some of the appointments referenced above, I am led to believe that she will be formally diagnosed with some version of Lewy Body Dementia and/or PSP. (Progressive supranuclear palsy).

- She falls often
- Her eyes often seem glassy and when asked to ‘follow the finger’, seems to struggle most with looking down.
- Has some memory issues, but not glaring
- We’ve done swallow tests and found that it is mostly liquids that cause her to get into nearly uncontrollable coughing fits

My question is this:

These are the 3 that naturally come to mind…
- How much time?
- What should we expect from here?
- Any treatments, meds or therapy available?

Assuming that we do end up with the Lewy Body or PSP diagnosis, what other questions should I be asking the neurologist?

Thanks all.

This message has been edited. Last edited by: Ronin1069,

When I was a shared paralegal one of the “of counsel” attorneys I worked for was very clearly (to me)developing serious memory problems I believed to be dementia. It was not necessarily readily apparent in casual conversation to other people. I tried discretely to talk to a couple of other attorneys in the office about it because I was really alarmed that he was going to do something to get in trouble in court or with the State Bar but for a long time I don’t think I was really believed until another attorney agreed to assist him on a case. He was billing clients over and over for hours to “review file” fo some little file that anyone would know backwards and forwards in fifteen minutes. When he died several years later (and after he retired) the obituary stated he had Lewy Body Dementia. He had other serious medical issues, but he was not having issues with falling orswallowing or eating

Ronin1069,
I have a high school classmate that has Parkinson’s and Lewy Body. First symptom was falling, followed by difficulty assembling complete sentences. It was difficult to diagnose. His disability has been 5 years in the making, with falling starting just over two years ago. He is in a nursing home now.
My classmate is 68.
I hope the best for your Mom.
Billy

My mother-in-law had Lewy body and my wife took care of her the last seven years of her life. She had it for about 7-8 years. I'd like to offer you some hope but it is a horrible disease. She was unable to take care of herself for the most part about a year after diagnosis. She began having hallucinations the last three years and by then hardly knew anyone she had known for most of her life. Oddly, she never forgot who I was. Swallowing does become a serious issue as does a gradual loss of interest in eating. My wife put it best when she said her mom died two years before her death certificate indicates. She was a fine lady and a great MIL. I'm sorry if this is too stark. I will pray for you and your mom.

Donothing

I appreciate the frank and honest comments.

Ronin, first of all I send prayers and wish you luck with what your Mom is going through and what you may be dealing with long-term on her behalf.

If it turns out to be Lewy Body dementia, I suggest you do an internet search for articles on the late Stan Mikita, the legendary Chicago Blackhawks player. His story has been well-chronicled by Chicago-area media, and you may find helpful information to give some insight on how to both help your Mom and avoid your own emotional burnout.

One of the hardest parts of hearing a neurological degenerative diagnosis is that there is no traditional ‘next’ step.  There is no ‘starting chemo’ next week or a meeting with the surgeon to plan for.  There is just waiting for the next symptom to manifest and doing our best to counter it … every day is about working to maintain and protect individual independence and quality of life.  There is no getting better.
 
The conversation netted this, mom has a neurological disease that falls under the category of Parkinson’s Plus.  Parkinson’s Plus is not traditional Parkinson’s Disease, it presents with many of the same symptoms but does not include the tremors and shakes that Parkinson’s is most known for.  (Think Michael J. Fox).
 
Falling under that Parkinson’s Plus category are both Lewy Body and PSP,
 
Unfortunately there is not one single blood test or brain scan that can be done do make diagnosis’s like this; it is a process of elimination and looking at what is left.  As a point of reference:
 
Unique symptoms of Lewy Body include:
difficulty processing information
difficulty following instructions
decreased awareness of surroundings
hallucinations
delusions
sleep disturbances
mood changes

Unique symptoms of PSP include:
falling backward
blurred vision and difficulty reading
difficulty moving the eyes up and down
slurred speech
difficulty swallowing
depression or other mood issues
behavioral changes 
laughing or crying at inappropriate times
 
The recent brain MRI’s did not show any glaring issues and the brainwave tests she took proved that she was not having seizures.   We watched Dr. Erickson take mom through a number of strength and agility tests, some she seemed to do very well with and others she really to struggled at.
 
This category of disease has to do with the amount of serotonin getting into her brain; we asked a question, “have we not invented an artificial serotonin?”, The doctortold us that such a potion does exist, but it is designed to treat the tremor symptom more than anything else; as I mentioned above, tremors are not an issue here.
 
There are no current treatments, cures or pills for these types of diseases.  A Mediterranean type diet, exercise, regular routines, and mind games like reading a book or crosswords go a LONG way towards holding off the future dementia symptoms.
 
Avoiding falls and being able to navigate personal bathroom issues are what will dictate how long she can live in her home.  

Anyone familiar with a DaTscan?

We were told that doing one would better give us an idea as to if we are dealing with LBD or PSP. The neurologist’s point being, knowing would give us the option of better prepping for what is to come.

At this time, mom does not want to know.