Lewy Body and weight loss
My sweet hubby was diagnosed with Alzheimers in 2018 at the age of 63. We did not accept this diagnosis for over a year due to the fact that several other highly respected neurologists, a psychiatrist, two internal medicine specialists, and a rheumatologist diagnosed a variety of diseases such as depression, severe depression with anxiety, PTSD (which was accurate as a partial diagnosis), REM sleep disorder (part of LBD diagnosis), sleep apnea (true), etc. Finally, we were recommended to Mayo Clinic, and, for the first time, we heard the awful words - Lewy Body Dementia. This fits all of the categories and all of his symptoms - but we still preferred the other diagnosis of severe depression and it was another 6 more months before we finally acknowledged LBD. Now, 5 years later, it has progressed and we are around stage 6. He still walks very well, dresses with needing assistance sometimes, does not display incontinence, eats independently (not always correctly but can feed himself), can get items from freezer (ice cream, etc.)...however, the list of things he cannot do is getting longer at a fast pace. His hallucinations are very frequent and usually not disturbing to him. Since February 1, (5 months) he has lost 42 pounds and it is obvious. We have had to buy new clothes, etc. He also became very combative a few days ago- but that appears to have stemmed from severe constipation. We have tried "upping" the caloric intake, etc. He may gain a couple of pounds but usually loses that and more quickly. He has gone from 201 to 158 so fast that it is frightening. Has anyone else experienced a rapid weight loss similar to this? It is so sad.....and my heart hopes for a solution other than "disease progression. " Yet, I have hoped before and had to accept truth over desire as reality. Grateful for a place to share with others that understand...
Jan
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My Dad , my brother and my husband have Parkinsons. My Dad passed from complications from
Non Hodgkins Lyphoma. He lost about 75 lbs. He was getting feedings with a gastric tube. He had LBD and sometimes his comments were bizarre and other times he seemed lucid.
He died in 2018.My brother is 67 yo and is in hospice. He also has LBD. He freezes and all you see is his lips quivering. I believe he has absent/ undiagnosed seizures. He looks like a skeleton when I saw him earlier this year
I suggested protein drinks to my sister. My spouse has not gotten as far as my brother.
He was diagnosed in 2018 ( twelve day's after my Dad passed)
I knew he had it ..but I tried to act like it can't be happening to someone else I love. This is sometimes more then I can handle. My heart goes out to all caregivers ! Hugs to you and your family.❤️
Hi Jan, I am in a very similar situation with my sister Cherie who is now 64. In 2020 we noticed her repeating the same conversations we had just had with her. She also was having a hard time at work remembering how to get on her computer and other things. She had all kinda of testing done. Nothing was conclusive so they defaulted to Alzheimer’s. It has been difficult getting a diagnosis but just this year a doctor at Brigham and Women’s Hospital in Boston diagnosed her with LBD with Parkinson’s which fits all her symptoms. So it took 5 years to get her diagnosed correctly! She is also in the late stages and has lost 30lbs in the last couple months bringing her down to 105 lbs. She’s just not hungry and sometimes it makes her feel sick to eat. She has a rollator now to help her walk. We can’t have conversations with her anymore- she just answers questions. Her beautiful face has no expression anymore. She hallucinates but it doesn’t scare her. She sleeps so much and acts out her dreams. I’ve been working on giving her quality of life, bringing her to see her children, going out to lunch or just for a ride. But it seems that strategy is ending. She doesn’t want to do anything. My heart is breaking. I’m sorry that you are going through this also. To see your loved one slip away from you when they are physically still here is devastating. 💔
Hi Deb, I am so sorry. This disease is relentless and is hard to describe to others because every case is different. My sweet hubby has lost down to 142 lbs and is completely incontinent. Because he was always very athletic, he is still walking but not as well. His vision has been affected and he walks into walls, falls on the floor when he thinks he is getting into bed, sits beside the chair and not on it causing a fall, etc.. He eats, but we usually have to feed him. Somedays he sleeps 22 out of 24 hours, somedays he sleeps 2 out of 24 hours. He does not like to be changed, and that is always very challenging, but we get the task accomplished. I am always tired, but I am also more determined than ever to finish strong and be there for him. I pray you will be able to take great care of your sister and find moments for yourself (much harder than it sounds). God bless you for caring enough to take on an impossible disease, and make your sister's journey one with centered with so much love. You are a very special person.
God bless you also. It is a horrible disease and so hard to watch our loved ones who were once so strong struggle. My sister owned her own gym and was always a very strong person. My brother-in-law works but takes care of her at night and we have other wonderful people who help out. I hope you have support also. Take care of yourself too Jan - it’s so physically and emotionally draining. I’ll be keeping you and your family in my prayers. Deb
I have no idea what stage my husband is in with LBD, but it is definitely progressing, and I suspect he had it for several years prior to being diagnosed.
He has bouts of constipation and it’s a cycle. I keep a record so I know if he starts certain behaviors or having complaints I know the cycle is on the upswing. He also has Microscopic Colitis - so it’s like he’s at the extreme ends of symptoms.
He did rapidly lose about 40#, but has slowly gained about 30 back. Now he’s worried about his clothes not fitting! It’s another part of the disease. Peace, Cheryl
I have LBD. It is heartbreaking fo all involved. I go in and out good days and bad. I was not expecting all the bone pain that comes with. I just informed my MD I was no longer going to any specialist, with the exception of my pain MD. Instead of colonoscopies, I refused. I did do a poop test where you send in poop. That test was negative. Thx for listening.
@merridee
Merridee, You are a brave soul, and I pray that you have many more easy, peaceful days and that other people fall in place to help you through this journey.
I am grateful to you for sharing about the bone pain. You have given me an insight into what might be causing my hubby to be more agitated than before. His face looks like he is in pain.....and I have been trying to figure out how to help him, but since he can not communicate - I have been feeling frustrated at my own apparent incompetence. I hope you can feel good that you have given me a path to pursue to make my soul mate's days a bit easier. He was the kindest man and while I wish this wasn't his journey, I can be grateful for gutsy people like you that are helping others along this hard path in life through sharing your pain and your honesty in facing LBD.
Wishing I could shake your hand and hug your neck....you will be in my prayers. May God bless you in many ways.....
@merridee Thanks for sharing. My Mom has Lewy Body and is losing weight. I didn't know this was part of this specific type of dementia. Mom fractured her spine needing surgery two years ago and it used to cause her pain. She had a lot of different bone pain but also has RA. Now, she rarely mentions pain but acts as though she's hurting. If I ask her, she will say yes, but can't quite pinpoint where it is.
I doubt all her pain went away and think maybe it is tougher for her to identify she's in pain. Sorry, I'm a little off-topic.
I just wish I could fly in, scoop up everyone with Lewy Body and make it all better. My heart hurts for you and all of us involved.