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Topic Losing Weight, Slowly, but Steadily Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.08.23 17:38
As many of you know, I have been on Weight Watchers since mid February, and have lost 58 pounds as of this morning. That is neither here nor there for PWP, sort of explains why weight is an issue in our home...HIS weight loss is too scary, I think.

My husband went on WWs with me, to support my efforts. He wanted to lose maybe 25 pounds. HOWEVER, as of this morning, he is losing, and losing faster than me, it is unhealthy. We eat well, you do on WWs, but he now seems emaciated to me.

You know me, I have researched, mulled over this, etc. prior to posting...Now, my question is simple...

Carl is only on Requip and a very low dose. He has not started sinemet, etc. but feels that now, after four years, it may be time...So, it isn't the meds. Like I said, he was trying to lose, but has lost over 45 pounds and is at his lowest weight since his Marine days at 19 (he is 65 now). He was a tad over an ideal weight when he started, but now he is WAY too low. Should I encourage him to eat more to gain some of the weight back? Are the tremors that are now on both sides working against him? And, basically, is being so very underweight bad for a PWP? His Mom had ZERO body fat after her dx and five years in, so maybe is his metabolism genetic and kicking in?

In the scheme of so many other realities with PD, this may seem minor, but it truly isn't. In my eyes, he is withering away. As for asking the doctor, well, don't go there...I WILL push him to go to SF now that he wants to go, but until then, any comments?...Thanks for any input. Jane

By ysracer On 2013.08.23 19:21
My wife lost lots of weight with PD. from about 145 to 98.
She gained back a few pounds by eating Milkshakes and lots if sweets.
Now around 102.

By LOHENGR1N On 2013.08.23 19:32
Jane weight loss is common with P.D. if you go to like the A.P.D.A. web site they have booklets or they may even have recipes for snacks high in carbs low in protein for PWP. It's not only the tremor but also the rigidity we have to over come to move that burn up calories. As they say just living with P.D. is like doing moderate exercise all day long. Take care, best of luck and hang in there

By dans316 On 2013.08.23 21:13
June lost about 20 pounds back in 2009 going from 95 down to 75. Doctors did not seem worried and I thought it might have been from the breast cancer/radiation therapy, but she has since put it back on and is around 103. Seems to stay at that weight pretty much but hardly eats anything. About the only thing she will eat a lot of are desserts:D

By jcoff012 On 2013.08.23 23:04
Thanks everyone...I think we have become rather overwhelmed by his constantly dropping weight...I don't panic, but this morning, after weigh in, he was down another two pounds in one week. It is healthy with WWs to lose that much if you need to lose a lot, but he does NOT need to lose anymore...

I will visit the website, Al, thanks for the resource. Dan, you need to get June some hula pie! YUM!

Again, thanks for one is "normal" anymore, are they?! Always something! Hugs, Jane

By dans316 On 2013.08.24 10:59
Do PWP have good appetites? June just does not eat much. Sometimes all she will have is a cup of soup and then only eats about 1/3 of it. She likes Mc D's and always gets a 1/4 lb'er with fries, but only eats about 3-4 bites of the burger and maybe 10 fries. She never was a big eater, but always ate a lot more than now. Of course being confined to a chair all day with little to no exercise might be a contributing factor. She says the food tastes good, but she just isn't hungry???

Hula Pie would definitely work, that she would eat. She does fine with desserts, usually eating everything, but then sometimes we share a sundae and she'll eat more than I do:)

By LOHENGR1N On 2013.08.24 16:07
Dan, I don't know for sure what is going on PWP for the most part seem to have good appetites or at least like before diagnosis unless depressed or something else is wrong. However as the disease progresses you've read me mention our autonomic nervous system is affected. Part of that system has to do with swallowing. When trying to lose weight we're told to chew our food slowly and longer, then we will eat less and feel full. Our esophagus has muscles in the lining that spiral downward, pulling the food in and as it pulls it down toward our stomach the muscles it passes then function to push it down while those below pull the food. (If you ever had a piece of chip or lump of food go down you know it hurts like hell and you can feel it being dragged down your throat.) P.D. can cause these muscles to not work and as food is chewed, our tongue pushes it back to be swallowed but it doesn't it just sits there, being chewed, filling our mouth with taste and flavor and as the diet trick says, it tricks us into thinking we've eaten more than we did, we feel full or not hungery. I suspect this is at least part of what maybe going on.

So what to do? As with everything else it seems in this disease you could try getting that 1/4 pounder with fries at the time Her med's are functioning at their best and see if She eats more. If She does you can change meal times or run it by Her Doctor to see if increasing Her med's are in order. As I said I can't tell for sure but that's my guess. (Plus it won't hurt to treat Her to an extra 1/4 pounder with fries to see and don't forget the soda to wash it down with!) Hope this helps. Take care, best of luck and hang in there

By Mary556 On 2013.08.24 22:04
My dear PWP has lost weight also. She takes carbidopa/levodop (generic Sinemet?) and her fact sheet from the pharmacy lists "loss of appetite" as a possible side effect. When my Mom's dose was reduced in recent months, her appetite returned. Now that her dopa has been increased again, she is not eating as much any more. So maybe this is another piece of the puzzle for some PWP's?

My mother also has difficulty swallowing as Lohengr1n described. I have a feeling sometimes she is still hungry but just stops eating because chewing and swallowing certain foods are too much of a challenge any more. She does not want to be a burden and does not ever complain or ask for special accommodation. I've started to pulse some of her chewier foods in the blender or food processor to give them a finer texture and that seems to be helping a bit.
Thanks again for all your ideas and guidance here.
Off to research hula pie :)

By jcoff012 On 2013.08.24 23:09
Mary, when I was the Activity Director in an assisted living, I would help with some of the residents by bringing them down to dinner, etc...We had one woman who had PD and had to have all of her food put in a blender because of swallowing issues. She had stopped eating, too, and doing that helped build her up and when I last saw her she looked MUCH better.

My husband has some troubles chewing and swallowing...tonight he had applesauce and cereal for dinner...said he just isn't hungry. Why I posted the question...he is becoming WAY too thin...

To answer about hula pie--it is a treat from Hawaii...look up Duke's is a gigantically huge piece of ice cream pie that usually two people share: Pictures online do not show you how huge it is, but you will get the idea!

By Mary556 On 2013.08.25 22:17
Thank you, Jane. Hearing about the lady whose weight improved makes me feel more hopeful. Best wishes for your husband, too.

My Mom did better today and finished all her meals. My Dad wants to get her some "Ensure" liquid nutrition drinks as a supplement. We will keep trying to boost her weight and encourage her to do her PT exercises more often. She has been losing muscle strength, along with everything else.

Your hula pie looks awesome! mmm-mmm wonderful!
Happy Dreams.

By jcoff012 On 2013.08.25 23:07
Mary, give me til the morning and I will see if Carl's PWP exercises are online...he has printouts from PT, but I don't remember if they can be found happy to share if they are...Sweet Dreams to you and yours, Jane

By Mary556 On 2013.08.26 08:54
Thank you, dear. Please don't go to trouble just for us. (Hope i caught you in time!)... My Mom did go to PT earlier this year and has diagrams of exercises she was supposed to do at home (knee bends, leg lifts, etc.) She did not keep with them and I am guilty of not prodding her more. Mom's neuro doc recently encouraged her to start again. We've been doing the exercises together the last week or two. I found some videos of them at "EHow"

When there is time in the next day or two, I could start a new thread with links to video of those basic exercises... then others could add to it? (I am curious now to see if there are other exercises good for PWP that my mother might not have yet.) A few days ago I did find some of the same diagrams online but they are taken from a published PT handbook and have a copyright.

Thank you for your kindness!

By jcoff012 On 2013.08.26 10:13
Not a problem...but, I fell asleep early last night, and we are going up to get some chaise lounges on clearance at Home Depot this morning, and I have to walk my morning, it may be a minute...Hey, what can I say, a dog with a bone, am I! lol


By jcoff012 On 2013.08.26 17:55
The exercises he has are copyrighted, sorry...they are basically ones done with bands and 1-3 pound weights, but mostly the bands. Sorry.

By Mary556 On 2013.08.26 18:10
Thanks for looking, Jane. It's OK. I have a feeling your husband's exercises may turn out to be similar diagrams that my Mom was given at her own PT sessions.

speaking of dogs with bones, i've been sipping hot chocolate and listening to IZ sing "over the rainbow/wonderful world"... not quite hula pie, but contentment!

By dans316 On 2013.08.27 11:06
What Jane didn't mention is she is going to Maui in October and will be staying within a stone's throw of Dukes:) Looks like Hula Pie will be on the bucket list:)
My wife June does like ice cream and always eats all of the serving I give her. I'd love to try to recreate a Hula Pie for her, but haven't been able to locate Macadamia Nut Ice Cream. Maybe ice cream is easier to swallow, so she eats more of it. She did have a swallow test last year and passed it.

By jcoff012 On 2013.08.27 17:59

Not sure how to feel about this, but here goes...Carl saw the regular doctor here in town because I told you, his neuro is a moron and never, and I mean NEVER, calls back or sees him...Here is what she did...

He is to take vicodin twice a day for his back pain. She upped his requip to DOUBLE the amount and three times a day. She says the vicodin and requip combo will make him constipated, so now he has to take stool softeners daily and keep exercising.

BEST part...he got the referral to the SF neuro! The one my doctor recommended and the one we met at the UCSF Conference in March!

By LOHENGR1N On 2013.08.28 12:04
Dan, I'm glad she has a healthy appetite for ice cream :) While she passed the swallow test last year we have to remind ourselves that this is a progressive disease and things might have changed and also that at the time of the test medication levels may have been at optimum so even a beginning problem would have been masked. I hope you get it sorted out.

Jane, a quick look for requip and vicodin said short term memory problems are a common side-effect.

By jcoff012 On 2013.08.28 13:21
Here's a question for PWP and caregivers who have already faced this...

The vicodin is making him extremely sick at his stomach, which we much so that *I* did the driving to get our grandson. When we got home, I fed Nigel while Carl slept...

My question, since this abrupt change in meds is new to us...when meds are changed or added and there is a reaction, is it ok to leave the PWP alone to rest? I took Nigel on my walk and to the park next door for about an hour and made sure his phone was charged and next to him...But, after a bit, I thought maybe I shouldnt have left him alone.
Any comments, since I KNOW his new neuro will adjust his meds and hopefully start him on sinemet or something similarr? Jane

By LOHENGR1N On 2013.08.28 13:45
Jane I can't answer that one for you, as you know I live alone. They way I've handled changes, upping the med's or introducing new ones is, and I'm glad and very fortunate I have the Neurologist I have is that when increasing or introducing He always takes my call and if he has to call me back it is never more than a 20 minute wait. (I've never gone a half hour waiting for a call back which is amazing considering I've been going to him for 27years). Also when increasing I always start lower dosage, say the increase is one pill I start at half a pill. I told my Neurologist early on "I live alone, if I start to see and talk to things and people who aren't really there I'm in big trouble!" So I do the best I can to watch and judge reactions or changes, then discuss them with my Neuro and We decide wether to keep going or not or try something different.

So not having been in the position you're asking about I defer to the many qualified caregivers here who have dealt with the question you asked Take care, best of luck and hang in there

By Mary556 On 2013.08.28 14:36
Jane, best wishes for your husband on his new regimen. Sorry to hear about his upset stomach. I hope that side effect will not be ongoing.

For the other side effect: in addition to stool softener, we have found that pumpkin soup is a good remedy. Limiting BRAT foods (bananas, rice, applesauce, toast) has been helpful. Oatmeal is good for roughage; you could grind rolled oats to powder in a coffee mill so that it cooks much faster and has a smoother consistency. We were cutting up prunes to mix into my Mom's oatmeal, but she has not been able to swallow them lately.

Dan, I found a recipe online for a homemade version of hula pie... as a substitute, you could use vanilla bean ice cream and mix in some crushed macademia nuts. (the ratio given was 6 ounces macademias to one gallon of ice cream.)

By carman96 On 2013.08.29 22:52
My husband doesn't have that much of an appetite some days. He hasn't lost weight yet though. He still likes his sweets.
I went to Duke's in Kauai for my 60th birthday in 2011. Four of us shared a hula pie! So good!!
I Love Iz too. Makes me want to go back to Hawaii!!

By dans316 On 2013.08.30 10:02
thanks folks for the recipes, I'll have to give it a try. Great thing about ice cream, even the mistakes can be good:) Of course maybe Hula Pie even made properly still won't be quite as good as it would at a Duke's in Hawaii. June's meager appetite is every day but she hasn't lost any weight. I'm sure her almost complete inactivity may have something to do with that

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