I would like some insight from some who have cared for persons(men) with this disease.
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My husband is suspected of maybe having this but dr’s are still not sure. He has some symptoms but not others…and he doesn’t fall either or have hallucinations. please let me know what your loved one’s symptoms are. I would like to compare
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. My person hallucinates,see’s things that aren’t there, Cannot walk without help,
thinks VERY OFTEN that our house ,car and people are two, not just one.He is incontinent at night . I wash bedclothes every day. He is at a stage where I am responsible for ALL HIS NEEDS, including bathing, dressing ,paying attention all the time about where he is ,and if he is using cane or walker. Really EVERYTHING every day. I choose at this time to carry on as long as I can , but it really can wear you out. . I wish you the best and hope you will not have a situation like this.
PS.My husband was athletic, Gen Mgr. of a company, but has had ,over the years several head injuries that we think contributed to this Lewy Bodie? It is NOT Parkinsons.
Hi Mizmish All of the above that you have mentioned about your husband goes with the Lewy body dementia. It is definetely time for you know to get some help for you. Maybe you can arrange carers as I am to come into your home and assist re showering, dressing helping you around the house. Support within your local area may help if you have family try and get them assistance. It is so easy and I see in each and everyday as I work High care in demetia as a Carer that the family member will start to burn out. You don’t want this to happpen although as you know is unavoidable in so many ways, Momentum has also place a post up on dementia. Please read he posts succh wonderful posts that help us all daily Take care Please let me know how things are going I knowhow hard this is you you. Piglit
Kathryn, does your husband have cognition problems along with Parkinson’s symptoms such as shuffling when walking or rigidity in his legs or arms? Does he have sleep issues? What exactly is he showing as symptoms (name all if you can).
the reason we started going to the dr’s in the first place was breathing issues, personality changes, lack of empathy and extreme fatigue. Then I began noticing small details with his memory, rigitity in his torso and neck and shuffling gait. He doens’t fall and hasnt and has no tremors. Just a totally different person that what he was and now he hums or make noises all the time ( even at sleep) and he isn’t aware of it . HIs memory is really bad; long term is fine, short term is awful plus now he has developed obsession w/ lottery tickets too. Here is a guy who never spent money and now I have to hide money and credit cards cause it is like he lost his filter in making good decisilons. He is on levadopa which has helped the rigidity in his torso and is on exelon and namenda but there isn’t any difference at all. His sleep patterns are bad too- even though he is on serequel to help him sleep he is up a few times a night and is usually up at 500 to start his day. It is just really frustrating cause he doesnt fit into any one category and doens’t have a lot of the main symptoms that he should have ( like hallunications for the DLB) but no dr can agree so I am looking to help . Plus his breathing still sucks and no one can figure out why… his pulmpnary work outs came out clean….So here I am still searching for answers…
My husband dones’t have the hallunications or fallsl he too was very athletic and did play college football and had concussions. Like I said he does have ” some” of the symptons but not the more common ones so I think that is why the Dr’s don’t really know what is going on but for some reason one likes to label it as the DLB with “parkonsonisms” … so I am stil in seach of answers. He can still dress himself and walk ( although his gait is off ) but he is totally a different person that he was 2 years ago. Plus he has the masked looked or blank look in his face all the time…One day at a time is my motto for now… Good luck and God bless!
Kathryn, contrary to what some people think, people with LBD do not often have hand tremors. They also all don’t fall. I have never heard of the breathing problem (and I have had discussions with many caregivers of people with LBD). I have a few questions: Why is he on Seroquel if he doesn’t have hallucinations (and how many milligrams? He is on a lot of meds. Is he on anything else other than Seroquel, Namenda, Exelon & Levadopa? How many times a day does he take Levadopa and did you see a cognitive decline after starting it?
My husband is 83. He cannot walk without help. He is extremely obsessive and demands to see our legal family papers or whatever he conjures up, over and over again. He is not on anything except EXCELON patch and moderate ZOLOFT at night. Also takes 1 oxybutninER, for incontinence at night. His voice is very soft and his muscles have wasted a lot. I was advised against Seroquel and some other drugs that are very powerful. I agree w/ that. My husbands legs and feet seem to be paralyzed sometimes, that they won’t move. No breathing problem though at a earlier time was treated for apnea. His dementia has increased greatly lately. Very sad.
I really can relate to your situation. I moved in with my parents because my mother had dementia then shortly after my Daddy was diagnoised with the same illness.I got sitters during the day and took care of them from late afternoon til sitters came in the next morn and also took care of them all week-end.I had a full time job also,but in time my health started to decline(I was very healthy) and almost got to the point where I was not taking care of myself because all of my time went to taking care of them. I contacted Hospice and they were life-savers.They can take so much off of youand if you have not contacted them please do so. I also had to get sitters at night because of getting up so often I was not getting much sleep.I really learned that patience and loving them,and prayer took me through this.I lost both of them less than 9 mos. apart and never have regreted the time I spent with them. My Dad always thought he was in someone else house and wanted to go home.Let me know how things are going and if you have any questions I will be glad to talk with you.
Thank you so much for your story. I need to do something pretty soon, because I’m 77 and in fair health, but the strain is hard sometimes. Will get back to you when I have a little more time. I’m glad you made it and I’ll never be sorry I could help him.
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