Weight Loss Metabolism Changes

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Weight Loss Metabolism Changes

Postby TAXED » Mon Feb 23, 2015 7:35 pm

Hello All, been awhile since I've posted anything but I'm frustrated with my wife's continued weight loss?

A month ago at her every six month appointment with the neurologist she had lost 26 pounds over the previous six months (now at 108 lbs). We've seen a nutritionist and have been closely monitoring her calorie intake for about six weeks. We have also been using a calorie increase product call Benecalorie (has 330 calories in 1.5 fl oz and is tasteless), along with other more obvious things like Ensure, etc.. Although she has diffidently lost her appetite we think she is getting on a bad day 1200 calories, and on good days up to 2,000 calories. Which I would think would stop the weight loss; but, it seems though she continues to loose weight. It's a real struggle.

Questions are:

1) Has anyone experience weight loss in their loved one even though they seem to be getting enough calories (a metabolism change or something)?
2) Any advice on this new phase would be very helpful, and greatly appreciated?


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Re: Weight Loss Matabulism Changes

Postby myownwoman » Tue Feb 24, 2015 7:50 pm

Someone here, I think it was Robin, who thought my husband's unexplained weight loss was probably due to cachexia, aka Wasting Disease. He gets plenty of nourishment but is now nothing but skin and bones. Too too sad. Perhaps this is what your wife has.
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Re: Weight Loss Matabulism Changes

Postby TAXED » Wed Feb 25, 2015 1:40 pm

Wow, thank you myownwomen!

I've spent the last hour researching this and I think this is what is going on. At first glance it seems more associated with Cancer, but if you spend some time looking I've found a few studies where Pick's Disease, FTD, and a few other PSP related diseases have patients with Cachexia.

I see a few drugs that seem to have might have some positive effects (but seem very controversial), then there is marijuana that is also talked about. We live in Oregon and it's now legal so I'm going to research a little more to see if there are fewer side effects then the drugs for appetite increase.
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Re: Weight Loss Matabulism Changes

Postby upnover » Sat Feb 28, 2015 11:53 am

I would say my wife is in the same situation with the weight loss. We are feeding her protein supplements, high calorie foods etc, but continues to lose weight. Won't be doing the marajuana thing though. I think with the PSP it is just a vicious cycle of the body slowly shutting down normal functions.
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Re: Weight Loss Matabulism Changes

Postby myownwoman » Sat Mar 07, 2015 12:44 am

Does anyone know what amount of calories is sufficient when the person is totally bed ridden unable to do anything more than breath?

I finally found a good site that figures the calories in a recipe: http://www.myfitnesspal.com/recipe/calculator, and found that I'm giving Phil somewhere between 1200 and 1600 nutritious calories a day - and have been doing so for the last year. Still he is skin and bones. I don't think I'm starving him. Finding out dietary information is next to impossible.
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Re: Weight Loss Matabulism Changes

Postby Robin » Sat Mar 07, 2015 1:08 pm

Back when my dad was in this state, we were told 1000-1200 calories is enough to sustain a large man getting zero exercise.

Personally, I try to eat 1600 calories a day, so 1K calories seems very high to me but that's what we gave. (I used myfitnesspal about a year ago to calculate the 1600 calories, along with a nutritionist.)
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Re: Weight Loss Matabulism Changes

Postby Ebs18 » Sat Mar 07, 2015 7:26 pm

Interesting - I upped my husband's feeds to 3000 kcal per day - he was really underweight -even with that amount of calories he wasn't gaining weight. He still looks like a shell of himself but just noticed his waist is getting bigger and I plan to cut back to 2000-2500. He moans and groans a lot which may burn calories. How long has your husband been bed ridden? Is he alert? my husband knows what is going on but doesn't react except for a yes/no hand squeeze that's about it...and the aides takes him out and around in a wheelchair (weather permitting) and he listens to his ipod or audible or meets with people who read to him - he is definitely in the later stages of the disease but not ready to spend all day in bed. Or, maybe I'm not ready to let him spend all day in bed... I'm curious about the end stages that you are experiencing.
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Re: Weight Loss Matabulism Changes

Postby myownwoman » Mon Mar 09, 2015 6:17 pm

It would seem that your husband is about where Phil was for quite awhile until this Fall when he had 3 bouts of pneumonia in a 3 month period. That really did him in. At Christmas 2014 he was still being gotten into his wheelchair, but for briefer and briefer periods of time. Our annual clan photo has him front and center in his wheelchair. By the time all gathered for my B'day in January he no longer wanted to get out of bed. He has had a rapid decline since Christmas. As I said in another thread, he seems to be in a Zen-like state and reacts to little.

A small funny aside: One of Phil's big loves-in-life was well-prepared food; he never forgot a restaurant; or a meal... anywhere in the world. I was talking to the night caretaker about Lobster. He said that he didn't know where to go to get a really good Lobster meal. I know that he goes to LasVegas now and again, so I told him there was a really good restaurant there that specialized in Lobster. I fumbled over the name, eventually coming to Rose something. I finally thought of the Rosewood Grill. I asked Phil if I had the name right and he almost squeezed my hand-off saying "that's it!" So, if the subject matter is interesting, he apparently can leave the Zen-state to be involved. :wink:
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Re: Weight Loss Matabulism Changes

Postby marebellhorn » Wed Sep 14, 2016 9:07 pm

Hello. My husband, Ted, is in the late stages of PSP and has been in Hospice for 6 months. He was recertified by Hospice several weeks ago - thank goodness. He is home and I have a little help on Tuesday and Thursday afternoons. Hospice has been very helpful in providing equipment, supplies, and baths. Ted has been struggling with this terrible disease for 6-7 years. His health has dramatically declined over the last 8 months in which he has lost about 60-70 lbs. He still has a good appetite consisting of mashed and pureed foods, but like the rest of your loved ones, he continues to lose weight and is skin and bones weighing 115 lbs. I don't think he has any more weight to lose. My question is and I don't know if anyone can answer it is: How much longer can he live like this? Is aspiration and pneumonia the main causes of death? If his body is shutting down, what should I expect to happen? Some days he seems to be fading away, but on other days he seems to be more alert. He cannot walk, talk, is incontinent both ways, extremely rigid, and all the other awful things that go along with this disease. Did your loved ones stay in this stage for a long time? My emotions just go up and down like a roller coaster. I know that each person with this disease is different, but if anyone can shed some light here, I would greatly appreciate it. I'm tired and sad as you all are or have been. It's been a long journey. Thank you, Marilyn
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Re: Weight Loss Matabulism Changes

Postby grandmakcat » Fri Sep 16, 2016 10:42 am

First of all Marilyn a big hug to you. I know exactly what you are going through and how hard this is on both of you.
I am sure that since your husband is in Hospice you have discussed feeding tubes, preferences for end of life, etc.? If not I would take the time to talk with them to get all of that settled as soon as possible so you don't have to think about that when the time comes. The hardest thing I dealt with with this disease taking over my husband was the inability to do anything to STOP it, or to make it better. But having all of the directives in place at least gave me peace of mind of what Denny wanted no matter how hard it was.
That being said, from what we were told the doctors and nurses all through the last few years was that aspiration pneumonia would be the most likely cause of death from PSP and that is what happened with my husband. He also lost a lot of weight (over 100 lbs) his last year because it was so hard for him to eat without choking on everything and he lost his appetite. He could only tolerate very small meals but the nurses said it was ok because he wasn't using calories at this point and he was comfortable.
No matter what I did to avoid aspiration, it happened. He had said in his directives that he would allow antibiotics for a trial or short time to see how things would go but not long term measures. He had a catheter as well and developed UTI's for which he was treated with antibiotics and twice for pneumonia. The third time he aspirated and got pneumonia he said no more, he was ready to 'go HOME'. He wasn't able to eat or have liquids because of the pneumonia but he didn't want anything and wasn't in pain or suffering. Hospice kept him comfortable, which he asked for, and while he was unresponsive towards the end, he could squeeze our hands a bit and heard us all with him. His passing was peaceful and calm for him and he was ready. He aspirated on a Monday and left us after midnight on Saturday a.m.
I say all of this because I know exactly where you are right now. I can't tell you how much I cried those last few months from grief, anxiety, fatigue and fear for both of us. I didn't want to see him this way anymore but I didn't want him to go. I was so tired and felt so guilty because I was tired. When Denny passed away I lost my best friend and I was devastated even though I knew it was coming. But as I have been able to step back from seeing his decline so 'slowly' day to day I saw how much of the man I loved had changed and I am glad he is no longer held by PSP. He fought a hard battle but one that no one with this disease is able to win - yet.
You are doing the best you can right now and doing the right things. Being with your husband, laughing and remembering and showing love are the most important things. Don't be afraid to cry together and talk about what comes next for both of you. I think once my husband knew for sure I was going to be ok he let go and was gone two weeks later. Don't be afraid to let him know you don't want him to leave, but it's ok when he's ready. I know all of this is hard but knowledge is power and knowing what to expect for me at least helped in my head to deal with what I had to do.
I will keep you in my prayers and I am here if you need to talk as I know there are others here as well. No one knows what tomorrow will bring so we just do the best we can one day at a time and remain as positive as we can in a tough situation. Hang in there! (((((((((Marilyn)))))
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: Weight Loss Matabulism Changes

Postby myownwoman » Fri Sep 16, 2016 12:59 pm

Ronnie: You said my feelings perfectly.

Marilyn: As hard as it's been these last days/weeks will be the hardest. I wish you courage, and will pray for you. And, as Ronnie said, please let us know if you need eyes to read and words to help.

May my Heart be Kind
My Mind Fierce
My Spirit Brave
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Re: Weight Loss Metabolism Changes

Postby HelpingDad » Sat Jan 21, 2017 7:50 pm

Dad has had a major decline in appetite over the last 3-4 days. Before he was eating breakfast, lunch, dinner and a bedtime snack. Now he has a small, if any, breakfast, can barely eat half a sandwich and small drink for lunch, then maybe only 40% of what he used to eat at dinner. He really has no trouble eating, other then the movements involved. He coughs very little while eating so I don't think it's a fear of choking issue. On days he skips breakfast I am giving him a breakfat shake, per dietician, least it's a few calories plus vitamins/minerals. Dad is also sleeping alot more and some days just wants to stay in bed.

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