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 Seven years in, still no diagnosis. 
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Joined: Sun Nov 11, 2012 11:38 am
Posts: 2
Location: So. Cal High Desert
Post Seven years in, still no diagnosis.
Good morning, my LBD-affected brothers and sisters...

My Mom is doing great this week and I (again) allow myself to believed we've turned a corner and gotten her health back on track at last. But in my deepest heart, I really believe that she has LBD.


MOM'S MEDICAL HISTORY.

Mom was physically healthy and quite energetic and active for most of her life. The only prescription drugs she took regularly were Zoloft (serataline) for chronic depression and, later Darvocet for the pain of degenerative spinal arthritis.

The only significant ailment I ever recall her complaining of was her first shingles attack which occurred when she was 63. The second one at 81 seemed to be less painful. I also know that she was on HRT for several years after menopause, Later in life she developed hay fever type allergies. She had cataracts removed from her eyes when she was in her early seventies. She will be 84 years old this December.

Her father died, possible of peritonitis or pancreatic cancer, at 63. Her mother died of congestive heart failure at 96. It may also be relevant to know that she remembers that her fathers mother had a "palsy" that was so bad she had to have someone to feed her.


YEARS ONE - THREE

Early Memory Loss

Mom, living alone on the othe side of the country, began to have particularly noticeable problems at age 77, talking in a new (for her) hyperactive manner, often repeating the same stories within the space of 5 minutes. I asked that she mention this problem to her long time physician and his dismissive response was that she was fine, and her daughter probably just 'wanted her money.' She switched doctors right away. Yay for Mom!.

Her new doctor sent her to a pain management specialist where she would go for an epidural every six or 8 weeks or so. She was still taking Darvocet as needed for pain.

The new physician did not recognize, and she did not tell him, that she was having mild cognitive impairment (MCI) issues, so I sent him a list of the symptoms I was seeing. In addition to a failing short term memory, she walked with a shuffling gait, complained of pain between the shoulder blades, and kept up a constant clearing of the throat. The physician then administered a memory evaluation test and added Aricept to her prescription list.

The only time she took this was when I was home to nag her about it. I recall that during one of those home visits she had a horrifying nightmare, but I attributed it to an drug-induced side effect and thought no more about it.

This doctor also discovered that she had a tumor on her thyroid gland. She had it and half her throid removed. The tumor was found to be benign and the constant throat clearing, and hyper and repetitive talking ceased. I continued to manage her health care as best as I could from long distance. At this point I thought that perhaps most of her problems might disappear as the newly prescribed Levothyroxine brought her T-3/T-4 thyroid levels back into balance, however Mom continued to grow weaker.


YEARS FOUR AND FIVE

Transcontinental Care and The Last Vestiges of Solitary Independence

Mom's P.A., who spends more time with her than the doctor, tells me that she doesn't think Mom has AD, because it is not progressing quickly enough. She has no other diagnosis to suggest.

Sometime between my home visits, the P.A. adds several more prescriptions, for shingles, constipation, and two, much stronger ones for pain. Mom takes these in addition to the Darvoset. She now develops an slight involuntary stagger and begins to have occasional falls. I request that the new additional prescriptions be dropped..

Mom does tell me that she is taking her Levothyroxine religiously, making it part of her Ensure and banana breakfast regimen.. Unfortunately I did not know, and did not think to ask if this was the right way to take it. As I would learn later, "Levo" is meant to be taken on an empty stomach and never with calcium. However, in spite of this her T-4 tests were still falling within the normal range, albeit at the low end.

Sometimes she complains of 'hurting all over'. and sometimes of a pounding heart which sends her to the emergency room, fearing that she is having a heart attack. She gradually became more reclusive, giving up her church and club work, and only driving to take the short, direct route to the nearest store to do her shopping.

Other than that, she loses almost all sense of local geography. When I take her for a drive, she does not recognize her favorite Bar-B-Que restaurant, the McDonalds that had the soft for ice cream she loved, nor the long time family drugstore. She still watches television every night, but now her short term memory is extremely bad. Reruns of Everybody Loves Raymond that played just the night before are always new to her.

She also enjoys reading and the company of her two cats, but seems to be living on Blue Bonnet ice cream. Though the intense craving for sweets worries me, her Fasting Lab tests do not indicate any metabolic problems. However, she is now beginning a period of serious physical decline and though she is extremely weak and shaky, the doctor offers no diagnosis beyond, "when the brain gets weak, the body gets weak."

My husband makes it clear that while he will move across country, he will only do so under great duress. I begin to research gerontological care options and learn about such professions as 'License care management." Mom and I start to have the conversation about the next stage of life.. It is time for her to make a change, but she resists all of my suggestions. However, we do have her will, PoA, and pre-need guardianship papers drawn up.

One year and two emergency hospitalizations later, Mom at last agrees to move into a local Independent Living Retirement Community where she has many acquaintances and where I can have her medication and eating schedules supervised.


YEAR SIX
Transition

The Community is located in a square six story buiilding with units surrounding a center atrium There are elevators at two diagonal corners and Mom's fourth floor apartment is directly across from one of them. It seems simple and obvious to me, but it takes her quite a while to grasp the geometry and logic of the layout of the building. She often turns and heads the wrong way when she gets out of the elevator on her floor.

She has now acquired some hearing loss. Enough so that she has a pair of hearing aids that she doesn't like and won't use, but not enough that she can't hear me when I speak in my normal voice.

At my request, Dr. X started her on the Exelon patch regime and this seemed to help a bit with her short term memory problems. I asked her physician to send her to a neurologist and he does, but with instructions only to look for nerve damage in a shoulder injured in an in-home accident over the previous holidays.

Mom begins to wake up with enormous black patches in the thin skin on her calves. The doctor says that she must be thrashing about in her sleep, but she insists that she sleeps well. To my knowledge and limited observation, I think that most nights she is a peaceful sleeper. although I am personally aware of one instance in the past year when she had a nightmare that she did not remember the next day.

I buy her arnica cream for the bruises and gotu kola in drop form, which is supposed help both memory and connective tissue problems. Motivated by vanity (she is beautiful and proud, and an elegant dresser, still) she uses the cream religiously, the drops, not so much.

Though she grew 50 percent stronger and fussed when I 'accidentally' took her car keys home with me for 8 weeks, by the end of this year she had given up driving entirely, She also lost interest in watching television, but on the positive note, she made a couple of friends and enjoyed the community social activities. After six months however, she began to fall again. A hospital stay resulted in no diagnoses beyond extreme low blood pressure caused by dehydration and perhaps, maybe, a heart problem, for which another prescription was offered.

Mom began to complain of vision problems and we got her new prescription eyeglasses. By the end of the year she reached her tolerance limit with the ever doubled Excelon and can no longer take it. Her memory loss now begins to include chunks of her personal history from years ago. She now has an additional prescription for another antidepressant, in addition to the Zoloft.

YEAR SEVEN
May-November: Moving forward while slipping backwards.

Mom was astute enough to take out Long Term Care insurance policy several years ago, but the the policy will pay only for her residence in a licensed care facility, which hers is not. This provides me with is the leverage I need. After another emergency hospital stay, I convince her that it is time to move across country to a Continuing-Care Assisted Living Facility near me. (A continuing care facility is one which allows residents to live independently as long as they are able, providing progressively more care as it is needed.) Mom will have her own apartment, but I chose a facility that allows residents of the memory care wing to bring their pets with them if and when they move in.

Though the facility floor plan is again, quite simple. even after 5 months she still does not have a full grasp of the layout, however she has learned how to get to the hairdresser, mailboxes, library, activity room, dining room and social hour. She is lonely and somewhat bored. She would love to make new friends, but feels that everyone is much older than she is and complains of meal partners who talk all the time, and of meal partners who are morose. Her ideal dining partner would share her interest in people watching.

She still cares for herself and her cats. She reads her paper (slowly) in the morning, sometimes writes letters to friends, reads light novels at night. She goes down to the first floor for meals Bingo, an entertainment events, but she can no longer interpret a bank statement and balance her checkbook.

Her current physician has her on Zoloft, Nature-Thoid, DHEA, Vitamin D and Namenda (this last, again, at my specific request). I supervise her medications by putting the daily doses into morning and night pill dispensers and leaving her big notes about what and when and how. She no longer receives epidural injections, but takes only Allieve as needed for pain.

Whether or not she is able to manage her own meds consistently remains to be seen. She went into a tailspin of depression and missed an entire week and the emotional and physical difference was quite noticeable. The stagger returned and the falling started again. Both of these symptoms stopped once she resumed her meds.

Less than six months from her last vision test, she complains that her eyesight has again grown significantly and suddenly worse. I note that she is now having difficulty with depth perception. She is diagnosed with age-related macular degeneration (AMD). We add eye vitamins to her pill box. I worry because the are the size of horse pills and mom has to place them way back in her throat to get them down.

Though she does not have a UTI, sometimes she has frequent, urgent urination urges and has had her first/last instance of urinary incontinence a few weeks ago. Within the past two weeks, she has had two occasions of fecal incontinence. But this stage seems to have passed, for now. She has been stronger and more clear, with better mental function for several days now.

According to one web assessment tool, while Mom is rated, mentally, at the "early stage of severe" on an Alzheimer's' test. I have investigated the various Alzheimer trials that are available for her, but even though she has not had hallucinations or delusions, I believe she has been showing symptoms of an LB-PD related disease from the very beginning.For one thing, the one consistency has been the inconsistency of progress from health to debilitation, and the cognitive flips from bright and aware to dim and confused.

Unfortunately while LBD is the second most common cause of dementia after Alzheimer's, it is the poor step child when it comes to being understood, or researched The randomness of its demands must baffle even the best experts!

What has been frustrating in Mom's case is that the symptoms have been masked behind several different possible causes...hyperthyroid, hypothryoid, depression, dehydration, Low blood pressure, Darvoset's side effects, other prescription drug interactions. (Her case history could be a great educational tool...."how many LBD symptoms are hidden in this picture?") It has been a diagnostic quagmire and Mom's PA once asked why, given my mother's age, I was pressing so hard for a diagnosis. After all, she implied, what difference would it make in the end?

My answer was a two-pronged one. In the first place, once Mom knew what she might be facing, she would be better equipped to make decisions about her future care and her lifestyle choices. And in the second place, without a proper diagnosis, how would I, diligent researcher that I am, be able to recognize advancements in treatments should they occur? (I didn't know then that said advancements were going to be few and far between.)

Right now, I would say the Namenda is helping tremendously. As long as it does, then we may be able to find relief for the other problems as they crop up. I have also had some hands on healing work done for her on two occasions and will again. She falls asleep and wakes up feeling refreshed and a little stronger and we both like to think that it helps in other ways.

And that's just about every thing I can think of to tell you about how this "Designer Disease" has affected my Loved One. I am sorry if I have been long-winded or overly detailed, but I remember how desperately I searched the stories shared by those of you who have walked this way ahead of us, looking for any scrap of comfort or knowledge. Just knowing what to expect, even as unexpected as it was going to be, has been comforting to me.

It has also been good have you reaffirm that it is up to us, the caregivers and care managers to become the experts in this disease and its treatments, because no one else knows as well as we, what stages and symptoms we are seeing. And our LOs have often crossed beyond the point where they can report and advocate for themselves.

Although I do not know what comes next, beyond trying to find a neurologist who knows something about LBD, I will try to come back and post updates here as we go through the next stages.

Jan


Sun Nov 11, 2012 5:18 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Seven years in, still no diagnosis.
Jan, you gave a very interesting account. Yes, it is very frustrating when there is no diagnosis and yet we are faced with dealing with the effects of the disease. You are so right in your comment: "Unfortunately while LBD is the second most common cause of dementia after Alzheimer's, it is the poor step child when it comes to being understood, or researched The randomness of its demands must baffle even the best experts!" I would add that LBD isn't funded like AD is, either. We who are LBDA volunteers do what we can to educate the medical professionals in our communities and, for the most part, they are very grateful for the information. But it's an upward climb to get the kind of national attention we need for our LOs.

God bless you for being on top of your mother's situation and getting involved in her care. And welcome to the forum!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 11, 2012 6:47 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Seven years in, still no diagnosis.
Dear Jan,
WElcome to the LBDA forums and sorry for your need, I know of many people who have waitrd for years for a firm DX. I know in my husband's case it was several yrs before we knew what it was.
I hope you find the comfort and support with us here and I wish you good luck, not an easy road to travel!

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Irene Selak


Sun Nov 25, 2012 4:43 pm
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Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: Seven years in, still no diagnosis.
I feel very fortunate. My husband is 69. He had memory problems which began a year ago. He was referred to a neurologist by his young MD. After examining him in her office a month ago, she determined that he had parkinsonism also and that most likely, he had LBD. I have googled the symptoms on this forum and other sites and am 99% sure that is an accurate diagnosis. So with one look, she suspected LBD. He is already incontinent and his symptoms fluctuate greatly. He has had 3 hallucinations that I know about, personality changes, wrecked his truck so he doesn't drive now, slurred and slow speech at times, has lost interest in the things he likes to do. I am sorry that you have experienced such a long period with no diagnosis. Your mom is very fortunate to have a daughter like you who stays on top of her condition. My husband and I have determined not to let it get us down. On his good days, we get in the car and go out for lunch and do things. On the bad days, he just naps and watches TV although he is very confused on those days. Best wishes to you and your mom.


Mon Dec 03, 2012 10:27 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Seven years in, still no diagnosis.
I can't tell you how much "all of the above" apply to my husband. I too feel its important to distinquish between Alzeimers and Lewy Body Dementia. As a retired RN, I knew my husband had something other than Alzeimers. On the first visit with Neurologist No. 1, we were told he had Alzeimers. Second visit with Neurologist No. 1, we were told, no its not Alzeimers and we were referred to a geriatic neurologist. First visit with neurologist No 2, we were told probable LBD with parkinson's. By that time, I had found this web site and was almost positive that we had gotten the correct diagnosis.

My LO is now year in four and losing ground. More anxiety, more confusion. In many ways, it appears we are starting all over again. My LO is one of those that symptons appeared to come on suddenly and then get better with medications. (Aricept, Namenda and Seroquel) The Seroquel was discontinued about two years ago, because it seemed to have a paradoxical effect as well as swelling in the feet. I don't dare leave him alone for any length of time because I am afraid he will forget where I'm at and try to look for me. I believe he may get lost because he gets lost in our home. Numerous times a day, I have to point him in the direction of the bedroom or bathroom.

Most of the time he is so sweet and agreeable, however, I realize my disposition is critical to his behavior. I need to stay calm at all times to keep him calm. It's hard but our life isn't all bad. We still have good times together. The times are different but not bad.

He likes to keep busy. I keep him as busy as I can, folding clothes, shredding old documents, reading the newspaper, unloading the dishwasher taking walks. I admit that I work harder at keeping him busy, than if I would do things myself.

I guess this is my two cents worth. We are getting ready to once again, fly to Florida for the winter. Each year I wonder if this will be our last year. We are able to get a direct flight to Orlando from Wis and a neighbor picks us up and brings us directly to our apartment. So far he remembers every thing and doesn't mind the trip. I think the trip is more for me than him because I don't like the cold and we can get out in the sunshine every day.

Hope every one has a great Holiday.
Mary


Sat Dec 08, 2012 12:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Seven years in, still no diagnosis.
You are very lucky that your LO is as well off as he is and can do so many things. I hope it stays that way for quite a while and hope everything goes well on your trip and stay in FL. Enjoy the sun for we northerners who aren't traveling south much this year! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Dec 08, 2012 1:55 pm
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Joined: Sun Nov 11, 2012 11:38 am
Posts: 2
Location: So. Cal High Desert
Post Re: Eight Years...
Thank you so much, for sharing your stories. I am in awe of those of you who are the sole caregivers. The toll on you is enormous.

prodgers, your husband declined very quiekly. I'm sure you must still be reeling from the changes. It's emotionally wracking, isn't it?

pmhodel, I hope your trip was a good one, and your husband has regained some lost ground.

Mom's year has been spent adjusting to a whole new lifestyle, harder and lonelier for her, but much more hands on for me, as far as being involved in her care. Everything keeps breaking...eyes, ears, teeth,heart, rashes, falls,etc, and we attend to them as we can.

I am so very thankful that she lives very near ALL of her doctors. I don't know how those who have to commute distances, do it.

After 6 months of tests and visits, the neurologist says his best guess is moderate Alzheimers, However, he has only now noticed her Parkingson's shuffle that has been obvious to me for several years. During our first visit, Dr. L. tested her reflexes, visual accuity and gave her a memory test and said definitely that she does not have LBD. I now wonder if he is reconsidering that quick answer. He prescribes Sinemet for her current low dose Namenda, to which he added Aricept at the first visit I believe they are helping, but any increase beyond the 5 mg level causes fecal incontinenece, and I fear the time when this level is not helpful.

Over the past year, I have been able to get Mom to a state of still not great, but a somewhat stronger physical condition She still able to take responsiblity for her physical care and does an excellent job of laundry, grooming and neatening but she seems to be reading less, though she still reads the paper.

Shas been extremely depressed, and as had difficulty adjusting...all of which is entirely understandable. Her internist changed her antidepressant from Zoloft to Celexa and increased it once, is reluctant to go higher. She did, however, approved adding St. John's Wort, which does seem to help, if I can just find the most effective intake medium for her.

One thing I have learned is that I have to work very closely with both her internest and the med staff at the assisted living facility, to make sure thee are no conflicting prescriptions in the works.

And that's what our eight year has been like. Better than the seventh, in many ways, but prayers are always welcome.


Tue Jul 02, 2013 11:16 am
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Post Re: Seven years in, still no diagnosis.
Welcome back to the forum Jan! I know how difficult it is to look for a diagnosis and never find one that fits the symptoms you're seeing. It took a long, long time for my mother to finally be diagnosed and it did make it easier to deal with when we knew other people are experiencing similar things. It sure sounds like you're on top of the care your mother's getting and I think that is the most anyone can do - and I remember how exhausting it was. Now that my mom has passed, what I remember most are those good times! So, hang in there and enjoy those good times!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sun Jul 07, 2013 1:07 am
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Joined: Thu Jun 26, 2008 10:28 am
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Location: County Durham. England
Post Re: Seven years in, still no diagnosis.
This illness can cause a lot of upset, as I have found since I was disgnosed, in 2004.

I lost my first consultant who retired 2 years after giving me the diagnosis, and then we got a locum, who threw a spanner in the works, by saying that she did not agree with the diagnosis, even though it had been confirmed by a high level consultant.

This lady was admant that I was just depressed, and went out of her way to rubbish my diagnosis and the consultant.

Then she simply disappeared to be replaced with a new consultant, who after looking slowly and carefully over my notes during a year long process, said that she agreed with the first diagnosis, of Lewy Body Dementia.

She also said that if I had been in any way depressed, I would not have been alive today.

The reason she said that was because 18 months ago, we were badly flooded at home, and that to me was very terrifiying at the time, as we were moved out of our home for 6 months to allow its rebuilding.

However through my memory problems I don't remember much about that time.

But you are not the only one who has problems with diagnosis, because many doctors simply don't understand Lewy Body Dementia, so either ignore the symptoms or blame it all on something else, without looking for the cause.

The sad thing about this illness is that you get depressed when things start to go horribly wrong, but like many other people, I am terrified of even saying that it happens to me now, simply because of the damage one doctor caused, by refusing to look at the cause ( loss of memory and forgetting how to do the many things I had done for years at work as an engineer)

Its very hard to cope with at times, but I am sure that in time you will get the diagnosis made official.

Please remember that you are not alone with this.

Kind Regards

Ken

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Take each day as it comes and enjoy it while you can.


Mon Nov 18, 2013 11:15 am
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