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

I know it is hard but you might need to take his car from him. I had a very very close friend who died with Lewy body disease and Parkinson's. As time goes by you will have to watch him closer. My husband has alzheimers. Last week he put something in the microwave that caused a fire, He also washed a load of paper plates.Both Lewy body and Parkinson's slowly deteriate the person. As the situaliron got worst they found a day care to put him in during the day 3 days a week and he didn't want to go but them got to where he loved it. At this time I am still keeping my husband at home. It is frightening to face. I told my husband his diagnose because it was driving him crazy not knowing why he couldn't remember anything. Hang in there and start pretaring for the future. Do you have any family you can call on to help out,

Hi Sandy, my dad has Parkinson's and DLB. He was diagnosed a long time ago and we did not have the education/advice or knowledge on how to deal with it or what to expect.
If we can go back in time, we would encourage a much healthier diet and constant brain and physical exercise. Also check out B vitamins and consider using B Plus you can also read the articles about it online. Lots of walnuts and green veg. Avoid stressful situation and if they arise deal with them calmly this will be good for you and him. This disease can be slowed down. I know others may disagree and perhaps medical opinions would too, but we have started the above late (when my dad hit 80) and even then it has had a positive impact on the progression of the disease. Enjoy your time together and try not to worry too much, and deal with every step at a time. My prayers and best wishes

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,

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.

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.

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 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.

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.

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.

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.