My husband was diagnosed with Lewy body disease with Parkinson's. Any advice?

My husband's neurologist explained and I researched about the affects of sinemet and dementia...the doctor recommended weaning him off it and that helped tremendously. Turns out LBD has Parkinson's-like symptoms, thus the confusion. You need a REALLY good neurologist and neuro-psychologist to get an reliable diagnosis plus a lot of bloodwork, brain scans, etc. Before this neurologist would make a final diagnosis, we went through so many tests, but they were necessary to find out the real problem. The other 2 neurologists we went to did NOTHING like that...thus the original misdiagnosis and mismanaged treatment. I was so thankful to our family doctor who recommended the neurologist that treated my husband until his death. We had a few better months before his final, rapid, heartbreaking decline. God give your strength and courage to keep working to find the right doctor and the right treatment.

My mother was diagnosed with parkinsons some years ago. She has been on sinemet for quite some time now with other medications as well. Dementia is now advanced and we will never know if its caused by the long term mix of her medications or the parkinsons progression. We found out with our own research. Not sure why doctors ask about all your medications and forget to tell you long term effects!
She was halucinating come to find out that can be due to mix of meds or longterm side effect from sinemet. Sadly my mother took meds to help her shakes and now she is a different person needing alot
Of care. Ive read medicinal marijuana can be effective for some but my motheres doctors pushed the paper away as we tried showing him our research. Ive lost all hope for doctors. While my father was at a care givers meeting he learned that a man in his class was diagnosed with dementia and prescribed meds come to find out it was a B 12 deficiency and thedoc had never even did blood work before diagnosing or prescribing. All is well with him now and he is only taking B 12. After all our family has been through... We have done more to help my mother than any doctor. Good luck and God bless you and yours!!

No answer but good luck my mom just had renal failure from the cipro she was given for bladder infection.It is a shame we can spend trillions of dollars on going into space but cant solve these types of problems.

My 87 yo mother was first diagnosed with either Alzheimer's or Parkinson's some 5 years ago. She was hearing and seeing things not there. She voluntarily gave up her DL as she was finding driving confusing especially in major road works near her acreage. She picks at little bits, crumbs, paper. She lost her sense of smell prior to all of this while my father (no dementia but extreme short term memory loss and neuropathy from toes to waist and dreadful balance) lost his sense of smell and taste a long, long time ago.
Mum was diagnosed with PLB about 2 years ago. Dad was running himself ragged looking after her, cooking or heating up MOW, getting up himself 8 times a night due to a massively enlarged prostate in a two bdrm villa we bought to put them in. After 11 months he too was assessed by ACAT and was classed as needing hostel care and I found them a facility 5 mins from me that had adjoining rooms. Five months later the facility moved her up to the high care section.
She has outburst telling people off, mind your own business etc but that is subsiding as she mostly is unable to use words that make sense. In the last few weeks using her walker has been stopped as some days her Lewy Lean makes it dangerous or just her shuffle. She is in a wheel chair now and Dad says some days the staff have to use the lifting frame.
He sits with her all morning then after lunch she gets put in bed and he returns to his room to rest.
Dad says they are very lucky to have been able to stay together.

the LBDA website is a wealth of information, www.lbda.org. Find out everything you can. Also check out the book "Life in the Balance: A Physician's Memoir" by Thomas Graboys. Dr. Graboys passed away last year but he was diagnosed in his 60's while still working as a cardiologist. My father was diagnosed with LBD at 80 and passed away at 87. His decline was slow but steady. He went to a good day care a couple of days a week, and we were able to keep him home with lots of support from home health aides and hospice in the last six months. Medications were helpful: he was on Aricept and Sinemet, vitamin D, Citalopram, low dose aspirin and he took a low dose blood pressure medication. But people with LBD are very sensitive to medications, especially sedatives and medications such as Haldol which can cause a serious downward spiral. Even over the counter cold medications had a negative effect on my dad. Hallucinations were constant for my dad though fortunately his were benign (mainly children and animals). Some medications (eg carb/levo can increase hallucinations, so it is a balancing act to find the right doses. A good neurologist with experience in Alzheimers, LBD and PD will be tremendously helpful, but even a neurologist can't predict how quickly things will progress. I think every individual is different. The only sure thing is that things WILL progress and you have to stay a step or two ahead of it and be ready for what comes next. Plan for the future, for yourself as well, but take time to savor the moments. I loved my father dearly, even more so when he became ill and dependent on us for everything. He never lost that spark that made him who he was and I am grateful to have had these last few years with him. I wish you well.

Sandy, the website, www.lbda.org is one of the best for any kind of lbd help. Also, Mitch mentioned the name of what is regarded as the top book on LBD for caregivers.

It's my understanding that the rate of progression varies wildly from person to person. My mother was diagnosed with parkinsons over 15 years ago and has had many strokes over the years. I found her doctor to be quite useless, only telling me she'd been suffering from increasing dementia for many years just before she went into a NH, but she refused to go to anyone else.

I cared for her in her home for four years until it became impossible to do it alone 24/7. She's been in the NH for two and a half years now, bed ridden, barely able to speak, hallucinates some, incontinent, eats next to nothing and is skin and bone. She's in no pain, basically just fading away.

She just turned 89 so, for her, progression has been very slow.

Sandy, for sure do not let him drive.I first noticed in 2009 that my wife, 82, was having some difficulties. After family doctor and Neurologist I then went to Univ of Michigan Geriatrics where she was diagnosed with lbd and low level of Parkinsonism and medicated appropriately. I have found that health care professionals , other than U of M, are not apprised of the differences between Alzeihmers and lbd. Although they share some of the same meds, some are very detrimental and irreversible to lbd patients. I was searching for answers and came across a wonderful book titled"A Caregivers Guide to Lewy Body Dementia" by Helen and James Whitworth, Amazon about $15. I have given that book to the appreciative family doctor, family, friends, and caregivers for them to learn more. Also, a concise publication by " National Institute On Aging titled "Lewey Body Dementia" , free, and they will send multiple copies. The Whitworth book has been a God-Send. Also, the lbda website has an excellent forum, www.lbda.org , phone 1 800 539 9767. Do not hesitate to get outside help to not only care for your husband but also to allow you some free time preventing you from burning-out as a caregiver. I learned the hard way. Just know there are many others out there rooting for you. Get that Whitworth book asap. Sincerily, Mitch

Dear Sandy, I am so sorry. My husband has frontal temporal dementia(FTD) and was diagnosed when only 58 ( 1 1/2 yr ago). While FTD is not the same as Lewy body dementia, it has similarities. My husband can no longer work, stopped driving at the neurologist insistence and eventually on SSDI. It is very hard and a lot of good ideas for you here but one thing not listed is going to an Eldercare attorney to get a living will, POA, and Revokable living trust if you don't have one. This needs to be done while he is not really confused or you will have problems getting things legally done. I am at the finances stage trying to make sure I am not broke and having money for his care. Put bills and things in your name. Take each day at a time. Enjoy the good days and times as much as possible. He many not be able to work much longer so be aware that can happen relatively quickly. Maybe he should stop driving now. It is so hard but we were just thrown into all this so quickly. I had to start a companion caregiver while I worked already 6 months after his diagnosis. Read a lot and get informed. Get copies of his tests, scans, & records are so important if going to another Dr for second opinion, being able to talk to the DR to get the right questions asked, etc Also I had to learn how to work the mower, snow blower, other things around the house that I was not familiar with. As my husbands knowledge of these things are gone now, I am glad that I had found out how to do things then. He can no longer fix things, mow, write checks, use the phone, even play a DVD. Take care of yourself that is what I am being told every day. Ask for help when you need it. This site gives me a lot of support and I so appreciate that I have found it. Will keep you in my prayers.

So sorry to hear about the diagnosis. First find the best neurologist you can...one who knows a lot about this disease. Don't let them mislead you with a diagnosis of LBD and Parkinson's. There are not the same. One or the other will present itself before the other. If he truly has LBD, the Parkinson's meds will make things worse as will some of the Alzheimer's meds. This is what happened to my husband. The misdiagnosis and wrong meds caused so many problems and caused him and me more stress. Parkinson's has it's own type of dementia..similar to LBD but not the same. Meds must be very carefully dispensed and monitored. A good neurologist and a good neuropsychologist are very important to a proper diagnosis and treatment. Be prepared to go back in time...5 - 10 years...and think about things that seemed off....loss of smell, taste, forgetting simple things, not being able to understand finances and a myriad of other things...then there are the personality and behavioral changes. What was his personality 5 or more years ago? How did it change? What about behavior? Routine or haphazard? Tidy or sloppy? Detailed or not? If he truly has LBD and you think back, you will see the changes started taking place long before any real symptoms appeared. My husband was about 78-1/2 when diagnosed. He was gone in 6 months. The decline was rapid and frightening. I do not mean to scare or alarm you, but you need to know the truth. Get online. Read everything you can. You will be surprised at how many medical professionals know little or nothing about LBD. Ask them about Alzheimer's or Parkinson's and most can tell you all about it. Ask them about LBD and they look at you with a blank stare. Guess they missed that class in med school. Seriously, though, you have to be prepared for changes you never could imagine: anger, combativeness, confusion, isolation, depression, hallucinations (visual and auditory), clean-shaven to unshaven, neat to sloppy...the changes go on and on. You cannot reason with these poor souls. You just have to go along with what they say and tell them you'll check into it. Most times they forget. If not, just tell him you're still checking. Reach out to a local support group for LBD. If there isn't one available, go online. Do NOT hesitate to talk to anyone...tell them how you feel...the anger, frustration, sadness, confusion...it hurts. It really hurts. and most importantly, take care of yourself physically, mentally, emotionally, psychologically. As I have said many times before because someone told me the same thing: remember what they tell you on the plane: put on your oxygen mask first. You have to stay strong in every way to help your loved one cope with this. Yes, he has the disease, but you will suffer too. it's OK. You'll be fine. Pray a lot. Reach out. Talk; cry; take some time for yourself even if it means going for lunch alone some where. I wish you and your husband well and hope that you will have some easier times to offset the hard ones. God bless.

I am in the same boat with LBD. She is kind and gentle but believes she is dead 40% of the time and can not breath (delusion). She has fluctuating cognitive ability, fused elbows, slow gait, and stoop posture. She sleeps solid for 11 hours PTL and enjoys the VON Adult Day Care program twice a week. The government provides 1 hour of care a day! She is 63 and her father and his two sisters had dementia/Alzheimer's. Any comments or suggestions would be appreciated. I had committed to her care but have started looking for a skiing, tennis partner and dancing partner. Life goes on with my commitment to her, but I have to keep sane.

Sorry, WebMD is the other website. Mom was not difficult, she decided on her own not to drive. On the sites I suggested, you will read about Parkinson's symptoms as well.

Thank goodness your husband has been diagnosed properly. My mother who fell backward three or four times per week, stared out the window most of the day, had a shuffling gait as well as consistent hallucinations was not diagnosed properly with Lewy Body dementia until three days before she died.
Everyone has given you good advice. I will add the following: Lewy Body is a disease that has been given a "Compassionate Allowance" status by the government. You can apply for Medicare coverage that will be easier to get (three weeks as opposed to several months) than with other disabling diseases such as regular dementia. Google " Lewy Body dementia, Medicare" and the information on how to apply for Compassionate Allowance Coverage should come up.

Get him signed up ASAP if you need this type of assistance. My mother needed it but due to the late diagnosis, she was forced her to take to bed six weeks before she died. My family cared for her by themselves until she passed away. Her doctor was unsure about the Lewy Body diagnosis even though Mom had all the classic symptoms - everyone of them.
You should read on WebMad and the Merck Manuals (for public, not the professional one) about Lewy Body dementia if you want to learn more about symptoms and what to expect. Best of luck and take care of yourself, too.

My father was diagnosed with Parkinson's and Lewy Body Dementia. He died last fall at age 70. In that order, although looking back, the Dementia most likely came first and was deifnitely the most debilitating. The awful truth of the matter is that medications given for Parkinson's make Dementia worse and medications given for the Dementia make the Parkinson's worse. Be careful with "standard" meds for hallucinations/mental issues: they do NOT work the same way in someone with Lewy-Body Dementia, and indeed, can make things much worse! You will need lots of help--the situation will demand more than you will be able to handle on your own. My father's decline was quite rapid over the last few years and it was very difficult to witness. I felt so bad for him as I knew he knew something awful was going on, but communication became nearly impossible, rigidity, tendency to suddenly fall backwards and the lack of sleep no matter what was tried was awful. He had REM-sleep disorder, which is quite common in those with Lewy-Body Dementia. My stepmother tried her best to take care of him but in the end it was extremely overwhelming. Facilties are not typically set up to handle someone with Parkinsons AND Lewy-Body; they are more generically set up maybe for the more well-known Alzheimer's--which is NOT the same! This is an awful diagnosis and I wish you all the best, I am so sorry. There is no cure and it is a disease that only gets worse. Diet, exercise, etc. perhaps delay a bit, but really don't do anything to alter the course of the disease. Beware of quacks out there who make promises. Get support for yourself as well as your husband. Sending you lots of love. My heart goes out to you both.

These two diagnosis seem to go hand in hand, exercise, exercise and exercise along with streaching and no babying even a simple task like brushing his teeth even if it gets two the point where he can only do half a task let him do it, and assist him in finishing the task. Lewy body demintia can be slowed to a crawl with daily exercise and a routine that doesnt really change, I took care of a man for seven years and kept him in stage two for almost up to his death at 92 years old. Dont stop talking and keep him active and social, and no babying him even if he struggles to complete a task let him. You can slow the progression of both with daily exercise.

The things that come to my mind reading the wonderful comments is "but how can we help them feel any happiness?". My mother has always been making me feel it is my job to make her happy. She will never really be happy, because for her the glass has always been half empty. ( or empty). She won't follow my suggestions to join in and socialize at the retirement home. It's not her nature to not be involved with helping others. Now she has given up. Her LIFE is about her dog and complaining that they are in PRISON. I tell her she is the only one who can make it better. One person complained a year ago about the dog being in the coffee room and so she claims they will ask her to take her out.
I explained that she can, according to the rules, take her anywhere but the dining room. She wants to be pitiful!! So I just let her vent about her life. She has all her personal things around her, clothes, jewelry, furniture, and her dog. I saw from my grandmother that in time they don't even recognize their own things.
I think one of the most common requests is "I want to go home". She will never feel at home anywhere again, I realize, until she doesn't know where she is at all. If she could go back to the house she raised me in, it would be isolated and 2 hours away from me, doctors, places to go, like the groomer for her dog.
If she is lonely now, it would be worse back in the woods. Someone else owns it, but doesn't live there. He is a good friend, but not able to take care of her.
And it's not his job! Thankfully, he visits her frequently.
Who knew what we would have to live through, and that goes for the patient and the caregiver?

Hi, Sandy. My husband also has LBD. We got a paper from the DMV so he could take a driving test but his doctor wouldn't sign it. Since I don't drive either, we are having a hard time with that. We are older than you (late 70's). He has 3/4 days when he seems perfectly normal, then nearly a week when he takes to his bed, won't eat, shakes more. He has vivid dreams but not bad ones. His short term memory is getting worse. He mumbles and gets upset when people ask him to repeat what he said. LBDA.org has a booklet that is excellent to help you understand what is happening. It can be downloaded or you can request a hard copy. (I got the hardcopy to share with our children.)

My sister was diagnosed with Lewy body disease and she was put n a nursing home and we were told that she would never come home again. I had noticed that her driving had become very dangerous and requested her doctor take her license away from her. One day she passed out sitting in the car in a parking lot. I called ER and we admitted her to the hospital and that is when she was diagnosed. After she was transferred to the nursing home they found out that it wasn't lewy Body after all and she is now home and driving again. But under medical supervision and doing quite well.We notice a difference in her attitude also. She is 67 and raising grandchildren. This diagnosis scared us to death. So be sure that is exactly what they say it is. I was told there is no cure ever.

Have him visit Dementia Mentors dot com or Lewy Body Dementia Beyond Diagnosis Facebook page. Have friends that are going through the same thing is invaluable.

Just when you think you had seen it all in your loved one you read something new on here. Referring to washing the paper plates in the dishwasher. I found food in my moms cabinet that a friend brought her, molded. I take her food frequently and try to remind her to eat it. Have to heat it and put it in her hands to get to see her eat it. Her weight is going up and down several pounds. I know she isn't eating what the retirement home provides. She will not eat fish, and can't remember to ask for a menu. Then doesn't check it before going downstairs. She's supposed to call and hour before to get an alternate. Bull@@@, she can barely remember to go down. ANY distraction, like my being there causes her to not want to go. She won't hardly go anywhere because she doesn't want to leave her dog!! I take it along when possible. Can't take her to the dining room either, of course. It's a battle!

I am 73 and provided care giving for LB Parkinson Dementia. She was in her 80's and was very astute cognitively speaking. The family put her in a home in the past , but she fell, so they brought her home. They were in a position to provide in home care 24 hours per day. Her daughter did all of the overseeing of her food, medical, etc. needs. Her husband lived with her, but for some reason did not want to help her.... suspect he just was in denial about her true condition. The only thing I can possibly share that might be helpful was that her physical therapist came one time a week and put her through very important exercises which she never wanted to do when the therapist was not there. But for anyone who is going to care for a person with these disabilities, getting training on how to help them get out of bed, to walk, to sit in a chair, and many other forms of best practices ... I would highly recommend because the therapist trained me as to know how to help her get a bath, to get around, etc. and most of all to know what to expect.... It helps so much to just know a few things to do right. She would have some hallucinations, but not often. She was from Switzerland, so I would ask her a lot about her life when she was younger, but, she was in a stage that she told me what to do, how to do it, and i was grateful for that. The comments offered to you on this site are so wonderful with good common sense. One thing that seems so common is the fact that it takes so long to diagnose this and get earlier treatment. Please do not be afraid of their lack of remembering you or even who they are... Try to focus on who they were. After my older sister had a serious mental breakdown, she was never quite the same. She did not have memories that we once shared etc.... it was like having a ghost of my sister. It devastated me deeply. I guess that is why I pursued the career of a Licensed Professional Counselor in order to help and restore a happier life for people who suffer. One thing to do that I know that you will need is to take care of yourself. You will need help. You will need respite care. You will need faith to realize that you are not responsible for things that are far beyond your control and understanding. I will pray for you to be spared the suffering of watching someone you love to deteriorate before your eyes along with the grief of feeling helpless. Read these wonderful comments because they are written for you to become a Medical Warrior to face this horrific challenges as they have. Blessings.

My husband was dx'ed with Parkinson's, LBD and finally Alzheimer's disease. Perhaps reading about my journey will hep you. The book is called Put That Knife Away because his personality changed. You will feel supported by reading the book. I also lead an lzheimer's Association Caregiver Support group Many people in our situation find support groups for the care giver and the care recever very helpful.

Don't let them give your family members Remoron it's horrible!

Sandy, so sorry to hear about your husbands diagnosis.
My father died from LBD, he was 93. He was not diagnosed until December, then he started on Risperadone. He seemed to be in good health, and very strong physically back in November, and I never thought he showed any symptome of dementia at all. He did have olfactory halucinations way back in July (he thought he was "leaking" urine all of the time).
Since he was so strong for his age I thought that his feeling of wetting himself was real, so we went to the urologist many times, many tests, and many incontenent devices....he was a proud man and it really bothered him that (in his mind) he was incontinent. He would swear that his pants were wet and that he could smell urine. I finally started spending the night with my parents and realized that he was never wet...or leaking. He was imagining it, even the smell. None of the 7 different specialists could put together all of the symptoms to be LBD! Finally a psychiatrist diagnosed him. The risperadone helped with the halucinations, and he didn't mention the urine again wich to me, seem to make his quality of life better but had even worse side effects after two weeks. His body became very rigid from the medication and fell several times. The risperadone seemed to accelerate the disease. He died after taking the risperadone for one month.
It can be very painful to watch...helplessly.
My advice would be to pay attention to every little detail, like if he sees bugs or things that are not really there. Or if he hears a song or voices, or if he starts kind of obsessing about something. If he is on medication, note when it was started and watch closely for any side affects/changes.
Going to a Pshchiatrist and watching my father go through the 15 minute written test really help me understand just how bad things really were...it was an eyeopener and I wish I had done it sooner.
Prepare for the worst, hope for the best, and enjoy the quality time you have with him. If I had known it would take him so quickly, I would have quit my job to spend more time with him.
You can get alot of advice from this organisation: www.LBDA.org, they will send you information and provide you with information.

I'm sending prayers your way!

My mom was also on a lose dose of ritalin. This really helped her during the day.

Sandy my mom also had the same diagnosis. The parkinsons did not come into play until after she fell and broke her wrist, needed surgery and then the symptoms became much more evident. My mom was on aricept and namenda and seroquel to help her sleep at night because she would always see people in the room. Looking back now, I think she had symptoms for a good many years before we were aware. Little things like not cooking, vacuuming we noticed but she would make sure the beds were made everyday. Once I noticed my mom was not bathing then realized she couldn't remember what to do or was afraid of bathing. At first my dad took care of my mom during the days and my sister and I took turns staying with her at night do dad could sleep. Then we had someone come in for a few hours during the day to help out. We were blessed with the help of family that we were able to keep my mom at home. Slowly her motor skills gave out and she wasn't too verbal, but she ate like a horse. My mom died from an old aneurism that we were aware of many years before when pre op testing was done for breast cancer. The others who stated above to keep active and eat right know what they are talking about. Just take one day at a time. What worked today may not work tomorrow. Spend as much time with your husband now while he is mobile and verbal.

Sandy, my father-in-law had the same Dx, though no one mentioned the Parkinson's until later. We didn't realize that a lot of the things he was doing were Parkinson tics: picking at dust or lint, e.g. on his clothing and furniture. My m-i-l signed him up for adult day care so she could have a break. The DLB caused visual hallucinations. Fortunately for us he stopped driving on his own. He eventually had to go to a skilled nursing facility. They lived in a house with a woodstove and he started a fire on the living room floor. It just got to be too much for her, especially when he started losing mobility.

I know it's hard, but I recommend you start looking around for places. Many have waiting lists and you don't want to wait until the last minute on this. DLB is a frightening Dx and receives much less attention than Alz.

Hi Sandy. My husband is also in his early 60s and was dx'd with Parkinsons in 1998. Because of his cognitive decline and high anxiety/panic levels I have suspected that he also has Lewy Body Disease. I would be interested in knowing what symptoms your husband has or how does Parkinson's with Lewy Body Disease present itself? Thank you.

My heart goes out to you. My boss, a surgeon, has it also.
I saw him forgetting things, but thought it was stress.
Then I retired and next thing I know the practice was closed.
He stayed home four about three years but eventually had to go to a ALF...
There are support groups out there and I hope you have one in your area. Take care

My Mom has LB. She is 90 years old and diagnosed a year ago. She doesn't shake from the parkinsons yet, just an occasional tremor. Meds have helped to slow it down, I know one of them is namenda. Before that she had audio hallucinations and she cried all the time. I couldn't each her at all. Her mind cannot seem to retain any information, she will repeat the same question the whole time I am visiting. You have to have patience, lots of it. I keep reminding her of her past, and bring it up, places she went and things she used to do. She remembers, mostly. I want her to remember. Seems like she has long term but no short term memory. The family put her in a home, that is how bad she had gotten. That broke my heat, but we had no choice for her own safety. She was up all night screaming and roaming the halls and falling. I am sorry about your husband, but there is help out there. Take care of him, he can't take take care of himself anymore,