Lewy Body and weight loss

Hello @teacher502 Jan, It must be so difficult to deal with LBD and now weight loss. Has anything changed with his eating habits? Does he like Ensure or Boost? You could freeze then and make ice cream. If he likes ice cream!! Lots of calories! Let’s ask other members @mrjohnwebb @ruthannw @IndianaScott @caregiverwife1 to join this discussion. I know you’ve met them in other discussions and I’m sure they’ll have good advice for you. Have you discussed the weight loss with his doctor?

Teacher502:

Have you already talked to his doctor about his weight loss? That does seem rapid. It may not be related to LBD at all, so best to quickly seek professional help if you haven’t already.

My husband has LBD as well and has also lost weight - though not as much nor as rapidly.

My dad died last year of stomach cancer and the Mayo Clinic was clear with me that calories, of any kind, matter. Think about how you can add calories to anything he eats. Add fats - think butter in his coffee, higher fat meats, smoothies with avocado added, even chia, flax, hemp seeds, etc. I have been one to think of food/nutrition as medicine. However, with that much weight loss, a high calorie/fat diet is important. A croissant or high calorie muffin with butter and jam might be a great enticement to get him to eat more calories.

I have such compassion for you on your journey. Wishing you days of joy amongst the suffering. Don’t let fear and anxiety take away all the joy you can create in the present.

This makes so much sense...he once had Graves disease and was treated for it and it went away.....but since his thyroid was not removed - we were warned that it might return in the form of a thyroid storm. I just looked it up and he has all the symptoms to include Afib. I am calling in the AM and taking first available appt as well as going through the patient portal. Thank you, thank you, thank you and God bless. Even if it is not this- I am very grateful for your caring enough to write.

Becky, We saw the doctor Friday for a hospice referral and he seemed to think this was normal disease progression....but after some of these posts I am hoping it is something else and going back to MD tomorrow. If he won't do the lab work, we will go somewhere to check it out hyperthyroidism- which he had a few years ago and lost 40 pounds very fast. See my "mrjohnwebb" comment. Thanks Becky for being the one to get others involved! I will keep everyone posted.
Jan

My husband was diagnosed with LBD in March. He had symptoms unknowingly to us of no taste ( before covid) and a clear dripping nose. And lost 88 lbs. he seems to like being able to say I am not hungry and does not eat correctly for having diabetes 2. He is also on diabetes drugs metoprolo and ozempic which can contribute also to weight loss. We dont know what stage he is in. Some days he is ok and some confused. We finally got him to sign a poa and make his will.
He is very stubborn on he will be in charge of his finances as he is “fine”. We have had some oops on bills and I try to keep a close eye on them. Everyday is a road traveled. My thoughts are with you.

I am so sorry that you are facing this. It is a very unpredictable illness and makes caregiving such a challenge - especially when the loved one lives by the mantra of "I am fine", and to them - they are fine. Watching over their every move, especially in the area of finances, is hard but extremely necessary...and one that my hubby has sort of relinquished to me as time moves forward (we have a specific person at the bank that will take the time to answer his same questions over and over and then tell him that he is soooo lucky to have me "help" him.) I have found that having people lined up with the knowledge of what to say to reassure him has helped immensely amd that gives me a moment to breathe and just say a little prayer.

Last nite I get the line from my husband. “I am so tired now. I now its from the little green pill. I explain to him that is his sertaline (zoloft). You have been on that for a month. It helps balance your serotonin. He had been crying everyday. He was put on donapezil and esitlopram back in March when he was diagnosed. He was taken off those two when he had low blood pressures in may. He has been doing well with sertaline. But he goes down this road every so often. It is so frustrating. It is so hard when he cried everyday. Had depression everyday.
I am reaching out to his pcp for help. Thanks for listening here.

@teacher502 , Jan, My husband has LBD and was diagnosed in early February 2020. He had lost 60 lb over a 3-year period through walking and exercise. His neurologist at the University of Utah warned us that he should not lose any more weight. One of the numerous symptoms of LBD is severe weight loss. Like all symptoms of LBD, who knows when they may occur. Definitely make your doctor aware of your husband's weight loss.
Jan KW, Another Lewy Warrior

I did want to add that we have always exercised and been very active. However, he did this at a healthy 200 - 207 lbs. Now to go from 201 to 158 in 5 months has been a hard truth to face. His ribs stick out, his shoulders are just bones, his legs look like sticks, his clothes all fall off,....We have been to several doctors over the course of the months and they are all saying he can't lose any more....we have tried the ensure, ice cream anything at night, eating high calorie meals later and more often, going out for milkshakes and ice cream, etc. He was on Wellbutrin - stopped that as well as many other meds. We have been referred to Hospice by the doctors at Mayo Clinicand our doctors here, but because he is walking, active, and not incontinent THEY TURNED US DOWN!!! The doctor did retest his thyroid, and it is normal. Two abdominal CT scans were also normal. All blood work is normal. It must be the Lewy Body......I will always wonder why this amazing man has to face this devastation....and just pray for a treatment, cure, something.

I started this post and just wanted to update. Quick review- my hubby lost 40 lbs in just a few months. He seems to have leveled out now and will even put on a couple of pounds and then lose them again. He has not gone below the 40 pounds in a few weeks. We saw our gastroenterologist, and he wants to do an endoscopy and a colonoscopy at the same time. He wants to use propofol as the anesthetic. I am concerned about the after effects....also concerned about the prep for the colonoscopy- he gets very hard to manage when he is hungry. Has anyone dealt with this scenario or the use of propofol? I feel very uneasy. I did ask the doctor at Mayo and he said I was right to be concerned, but this might lead to an important finding. I sort of wonder why even bother?? He is around stage 6 of the LBD stages.