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Topic Thoughts about change Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.04.02 17:22
Some recent subjects bring up an interesting point, with all the things to try out there I often wonder? How many times diets, supplements and over the counter medicines have been tried with all the best intentions in the world for helping (I'm not even going to mention the magical "C" word)? How many times does a quirk show up in symptoms sending patients and caregivers to seek advice as to what is now going on?

One thing to keep in mind is yes sadly we are what we eat! We also are how active we are? Meaning in this train of thought our metabolism. Exercise does speed up the body and burn calories but also speeding up the body will change the life of our medicines in our systems. If you think about it, if the blood is pumping faster so is everything being carried in our blood stream moving faster. Also with our diet, we are used to what we were eating and the changes to our intake will have some impact on our absorption of our medication and the length of time our medication stays in our body and does it's job. We all know or will quickly learn about protein and it's effects on some Anti-Parkinson's Drugs.

A Person can live without food for awhile, not long but for awhile. We can live only so long, a few days before our systems having depleted our fat store starts to drain the muscles then organs. I often wonder? At the start many feel great with a new diet then after awhile problems start ...... just wondering .... perhaps our bodies have used up their store of whatever and are now lacking and searching for something to supplement it? I don't know. To Me it makes sense we are what we eat. We go to the Doctors, they adjust medication, they tweek it, they try something else adding or subtracting .... they try to tune it to our systems and try to get the best results, it's a balancing act. Finding the right dose and drug to counteract our disease, to give us the best quality of life at the moment.

When we rush into new changes We upset this balancing act......we've in essence changed the playing field. X amount of medication works because Y is in our system. I'm not in any way advocating unhealthy habits or eating. I'm not advocating a sedentary lifestyle. We should try to maintain healthy eating and exercising, stay as active as one can safely do.

What I am trying to say is to make changes gradually. We've in many cases eaten the same foods for years. Like exercise we wouldn't try to go run a marathon or even a 5K, you have to slowly work up to things. Same with nutritional changes. Our Med's are tuned to who and what we are right now. Eat healthy but don't radically change overnight. Moderation is the key and changes slowly will be more benefit than wholesale change right away. Another way to view it is if you ever smoked and tried to quit. Cold turkey is the puts one through hell. We are just as addicted to our medicines as a smoker to nicotine. Change the nicotine levels in a smokers bloodstream and watch out. Change our medicines levels or effectiveness and we've got troubles.

Life with Parkinson's Disease is hell for both patient and caregiver/partner and that's in the best of times. No sense in looking for trouble and causing undue duress and complications. If you are going to try something and be proactive fine but please do it slowly and in moderation. Please get advise from the Doctor have them recommend a nutritionist to help guide the process and watch for problems, document the process so if it works you can help others if they want to try. I'm all for helping ourselves if we don't who's going to do it for us? I'm just for thinking things through thoroughly, weighing the pro's and con's and not rushing into trouble then wondering how I got there. I do wish every endeavor success however I'm all for heading off trouble before it becomes a reality. Take care, best of luck and hang in there.

By karolinakitty On 2012.04.02 22:41
I was just reading an article on Metabolism from John Hopkins it's interesting how each persons metabolism works especially in conjunction with food and medicines.
We could stand to lose a few pounds, we know, however, his metabolism and mine are totally different...Should he even try with all the meds he takes...I don't want anymore stress on him now...that's silly....
However, me..yuck...My metabolism has changed probably only because my lifestyle changed. We have to take that into consideration too. I was physically working a fast paced job...always on the go until I went to sleep at night. Now it's a different...not as Physical, definitely not fast paced, maybe a little more stressful, but, I don't even think that applies too much....

By parkinit On 2012.04.05 19:28
Recently, my spouse and I have tried two "adjustments" to our diets that are somewhat dramatic, but also can, if you believe everything you read, cause dramatic changes.

1. Drink more water. Especially the people with PD may get focused on something else and simply forget to drink throughout the day. My spouse said, "I have to really FOCUS on it to drink ample water." 64 ounces a day - he wasn't even touching that amount before. We assumed he was drinking lots simply because he takes pills every 2.5 hours. A quick gulp doesn't come close to 64 ounces in a day.

2. Be predominantly vegetarian and very "whole food" oriented, while flirting with vegan meals (not the complete attitude).

Lo, you're right, you can't do it cold turkey, but you can, eat up that junk food you have in the house, the nutrition-void white bread, products with all the additives, corn syrup, etc., and after that don't buy any more. We both have had cravings for sugar, but we are learning to live without desserts and eat whole fruits, nuts, steamed vegetables, beans, and yes, green smoothies. They are delicious if you only try them.

It took my PWP, who loves his sugar, a period of time to move over to this diet, but he knows it is helping him. He is more active, he is losing weight, and he feels better. Does he splurge or deviate every now and then? Yes, but it is the exception, not the norm.

Diet changes to HELP the PWP is something that is not for everyone, but the payoff is evident to us.

By parkinit On 2012.04.06 22:37
Okay, I should clarify I am learning to live without sweets. Apparently the craving is too string in PWP. We went to the grocery store together today (which I normally try to avoid), and my spouse was like a druggie on a mission when he said, "I'm going to get me some food!" He came out of the store with cup cakes, pies, candy bars, and hot dogs. Everything I hadn't been buying. He said he would eat them slowly, but I'm guessing this won't happen.

I tried. I even tried a bit of a guilt trip, saying, "you know, you have worked so hard to get that weight off and now you are going to gain it back (he's lost a few pounds). The volume to his hearing aid must have been turned off, because he didn't heed my advice (said tongue in cheek). SIGH.

By karolinakitty On 2012.04.07 10:43
Just a little more insight...

We have to remember that thirst and hunger are part of the autonomic system.

Even before my guy was diagnosed, after he had the TBI years ago....his knowing he was hungry or knowing he was thirsty...did not work....Even then he had to be reminded to eat...reminded to drink...

If PD affects the entire autonomic system...then I would assume that it would affect the reactors that trigger that need.....I don't think necessarily that it triggers a "sweet tooth" but the sugars can give you a "rush" of feeling "good"..

Chocolate can give you that same "rush"...and come on now's been proven that chocolate affects estrogen and gives at least women that "rush".....

By giving us that makes us feel good...thus wants us craving more...not so much an addiction or ocd venture but just a plain ol' feel good....

we also know that proteins can upset balance with the meds and cause naseau....for the longest time until we figured that guy was losing weight and losing weight...all he could eat were sweets just to get some caloric intake....yes he gained the weight back he lost, but, diet has to come with the flow of PD in my opinion.....

If you can handle a radical change without the added stress...go for it

In our case we adjust things slowly....

By LOHENGR1N On 2012.04.07 12:23
As I said at the start of this thread I am NOT saying don't eat healthy. What I said is if you're changing up your diet make the changes slowly. Our (Parkinson's Patients) balance of medication in our bodies is tuned to our present bodily functions as they are right now at this instant. Changes can and probably will have an effect on how we absorb those medications and the amount of medications that will be needed to balance out our systems after those changes are made.

As another way of seeing what I'm saying; Take our medicines, some people can take one and not be able to tolerate another one. Some can only take so much of one medicine and no larger dose. These medicines as I have always said are mind altering drugs. Just reading the warnings and side-effects of them will reiterate my statement.

So thinking of this a different way of seeing them: We've all or most of us have been Parents or cared for Children in our lives along the way. Remember looking at the medicines and seeing the dosage differences based upon age and/or weight on the packages? Our drugs even have different absorption rates based upon not only what we eat but also upon the time we eat prior to or after we eat.

Finally, I am saying eat healthy and exercise (as long as you can do it safely). By all means if you want to change diet to more healthy foods change your diet ...but do it slowly and do watch for changes in performance and the disease symptoms being exhibited. Keep in touch with the doctor as med's will be in need of adjustment along with those changes. I hope this clears up any misconceptions of what I wrote at the start of this thread. Which was to watch for changes because Our medication is tuned to how we are right now and any changes that will affect us will also effect our medications and the levels of that medication in our system. Or be on guard when making changes and be open to the thought that those changes can have effects on your loved one that many don't see coming or would even expect. Take care, best of luck and hang in there.

By parkinit On 2012.04.13 11:06
Wholeheartedly agree, Lo. Slow, gradual changes.

Sometimes it is hard to determine what is causing good/bad effects as it seems my spouse wants to constantly change something, and sometimes many things at once. It takes me and a nurse saying this is probably not good as we won't know what is causing adverse or positive effects on him.

Of course, his answer when I mentioned how helpful the alarms on my iPhone were to me was "Why would I want an iPhone telling me what to do . . . I have you!" lol

By buddy On 2012.04.21 10:31
One of the lessons my siblings and I have learned with our father with PD is that a. we are not going to cure him and b. we need to let him adjust to changes in his own way. He is 80 years old, and although we would love to see him eat better, rest more and be less independent, he is still an adult. He only wants to eat grilled cheese, macaroni and cheese, soup and (lots of) sweets. He still drives, still goes to his appointments alone, and does not want our help or advice in any way. My mother has always understood this to some degree, but as daughters, its hard... it would be nice if we could talk him into using the walker for every day. His last fall cracked ribs.

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