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Topic Food tastes terrible he says - new information Go to previous topic Go to next topic Go to higher level

By happygranny On 2009.09.18 21:32
It has been about 6 or more months since I posted here. My husband was Dx'd with PD Nov 2008. He went downhill quite fast but seems to have stabilized for the most part since April. He takes 3 Sinemet (Levacarb) 100/25s every three hours during the day from 8:00AM til 8:00PM and then a Levacarb CR 200/50 at bedtime. He also takes 2 domperidone 3 times a day and 2 Losec as will as small amounts of clonazepam for anxiety.

We aren't sure if it is completely the medications causing his trouble with food and drink, but hope someone can shed some light on this.
First it was water, he can very seldom enjoy a glass of water. He says that most of the time it seems to fizz up and he bloats and burps uncomfortabley. He also cannot drink any kind of juice. Once in a while he can have a bit of Ginger Ale. He mostly drinks milk, and 2-3 cups of coffee a day. I try to feed him liquicy food such as soup.

The last three weeks he has really had trouble eating even more than before. He says most food tastes like he has licked a battery. He used to really enjoy food. Even a treat of real butter on a home made bun doesn't appeal.

I joked with him because he can still eat dessert. When there is sugar in something it doesn't taste bad. His Oatmeal in the morning is okay with raisins and brown sugar, his yogurt goes down fine with fruit and sugar, but his favorite of all time Shepherds Pie does not taste good to him anymore.

Any thoughts please?

Jeannie

Is there some kind of chemical reaction going on?

By annwood On 2009.09.18 22:58
I don't recall anyone complaining about an aversion to food based upon taste but if anyone has any insight into this chime in. PD patients often lose their sense of smell and taste is very dependant upon smell. Your husband may be experiencing some swallowing problems which are common with PD. This might explain his preference for liquids. If he exhibits any increased mucous it is probably from the milk, which they advised against when my husband developed swallowing problems.

I wouldn't worry too much about the nutritional value of his diet but rather concentrate on caloric intake. If he like sweets, and it seems many PD pts do, let him have them. The carbohydrates are needed to combat the additional caloric needs imposed by the disease.

As we always sat - check with his physician and see what he/she says. There may be a need for a swallowing test.

By annwood On 2009.09.18 23:00
PS - welcome back. I was wondering what happened to you. Good to hear from you again.

By LOHENGR1N On 2009.09.18 23:54
happygranny, welcome back to posting. While reading your post the first thing I thought of with the taste of food was Our loss of smell! Annwood beat me to the keyboard with that lol. With the loss of smell food tends to lose it's flavor for Us. I don't believe there is any chemical reaction going on, however strange things do occur it seems with this disease. I've heard (read) some people benefit from taking several deep breaths through their nose a few times a day (to remind the old sniffer how it works). Some have reported regaining a bit more of their sense of smell. Maybe Your Husband would try this? The shepherds pie might start tasting better!?! It's worth a try for a few days anyway. Take care, best of luck and hang in there.

By susger8 On 2009.09.19 10:29
After my dad was diagnosed with PD and I found out about the loss of smell, I remembered that he mentioned losing his sense of smell in his early 60s (he was not diagnosed until over 10 years later). Interesting that it's so common, yet it's rarely used as an early warning sign of PD.

My dad now is eating less and losing weight slowly. He seems to be less interested in food and gets filled up easily. But as often reported by our members here, he still is enthusiastic about sweets, especially ice cream!

You could try giving him nutritional drinks such as Boost or Resource, if it's hard getting him to eat enough regular food for good nutrition.

Sue

By happygranny On 2009.09.19 10:51
Thank you all for your informative replies, and thanks Annwood for even remembering me and wondering about us.

I forgot to add in my initial question that he takes 4 Sennekot and 4 Tbsp of Benefibre each day for constipation. For the most part, this works but needs the occasional dose of Milk of Magnesia.

We have been waiting since February (can you believe it?) to see the GI doctor who specializes in PD related problems. My husband has seen another GI doctor and had a colonoscopy and ..? what is it called when your eshophagus and stomach are examined from above? Found a Hiatus hernia. He has not had the test of Intestinal motility disorders, but we know he has something going on.

He definitely doesn't have much of a sense of smell, and yes, hadn't for many years before his Dx. However, what he describes seems more than that. As I said sometimes he can enjoy the taste of things, but for the most part when he puts it in his mouth it is a really bad, chemically/metallic taste.

Getting him to take deep breaths through his nose sounds like a good idea, I will get him doing that for sure.

I will not give him a rough time about eating what is hard to eat, and will make 'desserts' that are as nutritious as possible. He was drinking Ensure, but eventually that became distasteful to him too.

Oh, I feel so bad for him. He is so brave about it all. Stress always makes his symptoms worse ( typical) and we are in the middle of a move from three provinces away to be closer to grown helpful children. I think the stress of it all is adding to his symptoms.

It sounds like food tasting bad is not a common PD problem doesn't it? Maybe someone out there will have heard of this.

Thanks again,

Jeannie

By bandido1 On 2009.09.19 16:04
happygranny: wow! That guy upstairs has me really working today. As mentioned, Parkies(as we call ourselves) usually lose their sense of smell. Recently someone who contributes on another forum mentioned coconut oil as a solution. As I recall, i posted some information on its experimental use and determined that for some people it was successful. You might want to buy some at your local Health Food store.Virgin hydrogenated coconut oil in capsule form. It worked for me and hopefully will for you also. Bob C

By happygranny On 2009.09.21 22:00
Yesterday I found what I think is the answer to my husband's eating problems.

It is likely the eye drops he uses for Glaucoma. After a lot of thinking and trying to figure it out, I thought to look up his eye drops (Xalatan) and found that it does cause bad tastes in the mouth and even throat.

We kept thinking it had to do with his PD and the side effects of his PD meds and didn't look further. We will be seeing his Opthamologist soon and in the meantime he has stopped the drops and hopefully see improvement soon.

By annwood On 2009.09.21 22:44
Great detective work on your part. We often become so focused on PD that we fail to remember that other non related things can be going on with the pt. Hope this is your answer.

By SandwichMe On 2009.09.23 06:54
My FIL had the same problems with taste (and didn't have eye drops or any other meds that interfered with it). Water especially tasted bad, and we had to buy a certain brand of spring water that he thought tasted tolerable.

He lost interest in food when everything started to taste bad. Yes, it was linked to his loss of smell.

That lasted for nearly 3 years before he died. Nothing tasted good...only ice cream and fruit tasted like they should!

By Trish Sanchez On 2009.10.12 23:17
Yes, I hear this daily from my Mother, diagnosed with PD 7 yrs ago. She enjoys cookies (when she is able to swallow) milkshakes, ice cream. But complains that nothing tastes good anymore. The weight loss in the past 2 months is horrible. (about 30 lbs) I went by this morning to drop in and take some medication, she was sick at her stomach and vomiting.... Happens several times a week now.

She is angry and scolds me (for lack of a better term) regularly. Is this a normal reaction from PD patients?

This is my first post.... I don't want this to be about me, but I now find myself lying awake worrying and miss my Mom....

By annwood On 2009.10.12 23:27
Hi, Glad you are posting. You can say anything here - we are not judgemental and this caregiving is a hard job.

The symptoms you describe about your mother are common in PD. The loss of taste, the desire for sweets, the weight loss and the anger seem to go along with this awful disease. If you have the time to go through some of the past posts you will be able to see that many of us have or are going through the same thing.

This is about you, too. As the person taking care of her you will be going through a range of emotions - fear, anger, guilt, denial, etc. Don't underestimate the effect your mother's disease is having upon you.

Hope you stay with us.

By Trish Sanchez On 2009.10.12 23:34
Thank you I truly appreciate your reply.... that is correct, I fell every emotion you listed.

I will read through past posts. It helps to know others understand and have been where I am....


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