[pegleg]

I never thought I would be complaining about weight loss. Over a 6-month period, I have lost over 40 lb. (somebody will have to convert that to Kg). I have had PD for 14+ years (diagnosed 14 years, but had symptoms about 5 years before that).

Here are the possile reasons:

1) I had not one but two different surguries for cervical fusion (hernias in the neck). Since this last time I have had trouble swallowing - especially things like meat and bread. And when I am off (such as early mornings) it's quite a task to get my pills down.

2) Difficulty swallowing is a sign of advancing Parkinson's, but I still contend this was brought on by my second surgery.

I did request and had barium swallow testing, where you eat different foods laced with barium while a radiologist, nurse and doctor "watch" via x-ray imaging. And I went to extended release medications on everything I could and cut out 8-10 pills a day! Of course it's more expensive, but well worth it (and I have a good supplemental insurance plan).

The swallow test indicated some difficulty swallowing certain foods, but they just advised me to always have liquids to drink with food and to take small bites and chew, chew, chew.

Back to the weight loss - I have also had a decrease in appetite (and this really concerns me.) I lived to eat and didn't eat to live! I even LOST 2 lbs. on a recent cruise (where half of the time you eat - eat - eat; and at all hours of the day.

I haven't painted a pretty picture, but this is something we should know. Weight loss is a symptom of advancing PD, but the radiologist said the time for concern is when liquids seep into your lungs - common in end-stage PD and resulting in pneumonia.

If you do get choked on liquids, there are "thickeners" that will help prevent this seepage when swalllowing.

I am curious to talk with others about weight loss, and what do you do with all that loose skin when the fat is gone? Can we make stem cells out of it? lol

Peg

[SherylJ]

Originally Posted by pegleg

I never thought I would be complaining about weight loss. Over a 6-month period, I have lost over 40 lb.

I have also had a decrease in appetite (and this really concerns me.) I lived to eat and didn't eat to live! I even LOST 2 lbs. on a recent cruise (where half of the time you eat - eat - eat; and at all hours of the day.

I am curious to talk with others about weight loss, and what do you do with all that loose skin when the fat is gone? Can we make stem cells out of it? lol

Peg

Your post is a testament to the adage, "Be careful what you wish for." Every medicine we take warns of excessive weight gain or loss... I am never on the latter end, though I always wish I were.

Having to deal with "hanging flesh" when the fat is gone is just one more indignity we suffer with PD. I think we should start a contest asking people for ideas on how best to use this excess skin should we be blocked from harvesting stem cells from it. I'll start:

1. Use it as a blanket and wrap it around ourselves while watching tv.

2.

Humor usually works for me, and I'm answering this way in the hope that it helps you as well. I'm not a doctor, but I know what cures me... get yourself a double chocolate malted made with extra malt!

sheryl

[lurkingforacure]

I read recently that one way to help keep from choking is to tip your chin slightly DOWN each time you swallow (food or liquids) because that closes the pipe you don't want the food going down. Most people's natural tendency is to lift up, so this is akward, but apparently it is very helpful.

[pegleg]

Thank you for your responses. I guess weight loss isn't as big a problem with PD as I thought. Sheryl - I agree that "Saggy skin" is just as unsightly as the cellulite or obesity. I am still chuckling at your idea to use it as a blanket. I believe in donating to science, so do you think I could donate mine - like to use for skin grafts in burn victims or something? Or for those third world countries where cannibalism is practiced, how about using it to make fried pork rinds? (barf! )

Seriously, and lurkingforacure, you were, I need to work on taking smaller bites and chewing thoroughly. I developed bad habits when I worked as an elementary teacher. Although we were by law to be provided with a 30-minute duty-free lunchbreak, I guffawed every time I heard that mentioned. We had to make sure the little ones got what they ordered in the lunch line, and the single lunchroom monitor couldn't open those 90-100 packs of ketchup or millk cartons alone, then we had to remember that Susie and Johnny cannot sit near each other for disciplinary reasons; so the 30- minute "break" was more like 10-15 minutes (because you had to have youor class cleared out for the incoming one to find a seat!) Therefore, the habit of nearly swallowing your food whole was not an exaggeraton.

And yes, "chin tucks" do make the food go down the right pipe much better. Maybe taking a drink first might be of benefit, also. But the best thing for EVERYONE to know is how to spot a choking victim, and how to do the Heimlich maneuver. Hre's a simple explanation and graphic depiction:
http://www.ehow.com/how_14949_heimlich-maneuver.html

And I read somewhere that if you are choking and alone that you can throw your upper body over the back of a chair and do abdominal thrusts on yourself.

It's quite coincidental that my son just last week had a harrowing experience with a choking episode. He was eating sushi (that perfectly-shaped sticky rice filled with various chopped foods that usually matches the esophyogeal opening to a tea). He got tickled and sucked the sushi down his windpipe. Because everyone else was laughing, it took a while for others to realize he was really choking! His safety net was that he passed out and fell, requiring 32 stitches to close an eye injury. I guess that's a pretty fair exchange over death, but I wonder if he could hve dislodged the food by doing abdominal thrusts over the back of a chair? Guess we'll never know.

You caregivers out there should take note!
Peg

[Ronhutton]

Hi Peg,
I am normally 130 pounds, and have been for about 50 years!
However, now I have reached the 18 years mark, I am also having diffficulty in swallowing. For the first time I have dropped in weight to 123 pounds, and as you know I can't afford to lose any weight!!
I have real problems with large capsules, and have to cough them back up several times before I get them down the right way.
I have been also recommended to tip my chin down when I swallow, but it does not help for me.
The only tip I could give is if you find difficulty swallowing a certain large pill or capsule, try taking it with a hot drink that is not too hot so you can gulp it down with the pill. It seems to open the throat, and you can swallow quite a large pill I also find a hot drink seems to make a pill work faster.
Sorry about your son, and hope he has made as full recovery.
Best Wishes
Ron

[AnnT2]

I went to the emergency room of a hospital last summer because a pill became stuck for a couple of hours, and I was afraid of aspirating it. The doctor could not see the pill, but she gave me a glass of water and told me to gargle and then swallow. I did twice, and the second time the pill went down! Just like that! I felt foolish and elated at the same time.

I have learned to swallow water first so that my throat is moist. Then I put the pill in my mouth, fill my mouth with water, making sure the pill is sort of suspended in the water held in my mouth, and then I swallow. That does the trick 99% of the time. The other 1%, I do the gargle routine.

I have been tested and the results show no swallowing problems (!?). As far as the tilt-the-head-down routine, that definitely does not work for me.

Ann

[paula_w]

I needed to buy a new scale and wanted to before I posted. I'm at 116 today and have posted about this a few times. My normal weight varied between 128 -133 or so.

I passed the swallow test a couple of months ago, was scoped to see if my esophagus needed to be stretched [and for other things], was tested for pernicious anemia - everything normal. On paper I look pretty healthy other than the PD.

In person, that's a different story. Ann that would have frightened me too. Howard, where are you? I see that you asked about this in another thread.

with empathy,
paula

[jcitron]

Since I've started my PD journey, my weight has fluctuated from around 155 lbs. which is normal for me to as low as 130 lbs. I noticed that part of it is I couldn't give a rat fart about food like I used to. I used to enjoy eating, but now that there's little taste to it, I could care less. For a while I was eating big Italian sub sandwiches with all the stuff we're not suppsosed to eat. My weight went back up to 145 lbs and my doctors were excited. Anyway you all know what happened to me. The good stuff made sure the medication didn't work and the nausea set in. So now it's trail mix and other Yuppie healthy crap for lunch. The stuff is good for bathroom business, but not much else. I'm not necessarily hungry all the time, but since I don't eat much else during the day, I tend to get ravonous by the time I go home only to lose my appetite when it comes to meal time because of the lack of flavor.

So my conclusion is that eating and weight problems have two issues. 1) Lack of taste will contribute some. If food tastes like sawdust or paper, then it's not worth eating.

2) The swallowing issue, which is a non-issue for me right now, but I'm sure it will be at some point.

Ann,

I discovered along time ago about drinking water first before taking a pill. The reason is sometimes our mouths are dry so when we drink the water with the pill, they tend to float on top of the water instead of being pushed down the throat. This would cause the stupid thing to stick to my throat, tongue or gullet and make me feel pretty aweful until it dissolved on its own.

John

[SherylJ]

Originally Posted by pegleg

Sheryl - I agree that "Saggy skin" is just as unsightly as the cellulite or obesity. I am still chuckling at your idea to use it as a blanket. I believe in donating to science, so do you think I could donate mine - like to use for skin grafts in burn victims or something? Or for those third world countries where cannibalism is practiced, how about using it to make fried pork rinds? (barf! )
Peg

I love the way you're thinking, Peg. We have to be able to laugh at our situation sometimes or life is just too hard. Now you've got me thinking about launching a campaign to heal ourselves. How about a Wizard of Oz theme that has us all -- young and old; black, white, and tan; Christians, Jews, and Muslims -- making our way -- using walkers, wheelchairs, recumbent trikes, and canes -- to see the Wizard and asking for replacement brains, or stem cells headed for the garbage. No money will exchange hands... the governors of my state my not learn from the past, but I do.

Ok it's 3 a.m. and in rereading this I'm thinking its the sleep deprivation talking for me. Still scary.

Good night all,
sheryl

[Howardh]

has never been a problem. Pre Parkinson's (pre 1996) and doing extensive multi sport training (swimming cycling running) my weight was around 86kg (185plus ibs) From 1999 until most of 2008 my weight was a steady 76kg. (170lb) ideal for a 6ft individual. 2008 I dropped to 63kg over a four month period. Not one for weighing myself on a regular basis it was others around me that noticed the lean mean fighting machine look (not)

finish tomorrow