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Topic Dad in worse stage of PD yet Go to previous topic Go to next topic Go to higher level

By addiktd2kickz On 2010.06.07 17:57
Hello,
I was wondering as to what kind of remedies there are for my dad to do to maintain?It seems as if he is battling it out 10 hours out of each day, he can only eat at certain times, loss of sleep, etc. I try my best to do as much as i can when he is battling the symptoms. Please give me ANY advice to make my dad feel comfortable.

By LOHENGR1N On 2010.06.07 23:51
addiktd2kickz, Hi and welcome to the forum. I'm sure some of these wonderful caregivers/partners here will give you some great tips. You don't give much information as to what is happening so I'll give My slant on some of the things from a patient's view. We patients try to minimize the effects of this disease. But in the end they are symptoms of this Disease and really that's how we were diagnosed with Parkinson's Disease. So fighting them constantly is a no win situation. I'm not saying to just give up, NEVER! But we have to pick our battles, We can't stop these symptoms. We're going to have whichever symptoms the disease manifests in our case.

Many, many years ago upon diagnosis I thought ok, I'm the host, you're the disease. You picked me, so, you're going to have to live with me. Now many, many years later I'm more of the thinking, ok, I'm the host, you're the disease, we have to live together. Concessions have been made. We can't maintain, We can try, we can only grudgingly give ground to this or that but it is progressive.

I don't know how long your Father has had Parkinson's, but that's not the point here. You ask what can you do to make you Dad feel comfortable? You try to do as much as you can while He's battling the symptoms. First, He can't completely stop the symptoms nor can you or both of you together for that matter. So if I were to advise, back off a little, is He fighting the symptoms because he senses you or others around are uncomfortable with them? This disease is constant adjustments, we have to try to adjust to symptoms being presented. Our medicine has to be adjusted to changes in our brain. Depending on those changes new medicines may be used or others withdrawn if ineffective. Caregivers have to be aware of how they even look at us. We catch you're worried glance or pained concern and might think oh brother I'm really bad today or right now. This can cause us to stress about actions like tremor or dyskinesia and that only makes them worse. Causing more worry. I would say try to relax more if possible. If it takes Him more time to do something try to remember at least he can still do it. Don't mourn too much over things lost, cherish things still possible. If his voice is still good to fair talk with him, if he has problems with the volume of his speech turn down or off the TV or radio and take the time to sit for a few and listen. We can get discouraged if in conversation one goes about their tasks from room to room while talking. To you it isn't a problem lifting your voice to be heard to us it takes energy to increase volume and tires us out trying to talk loud. These little things are important, more so than one might think. If we have to decrease or increase our vocal range because of distance while trying to talk we will tend to think they don't care how hard it is for us to talk and we withdraw from conversations more and more.

As I said the caregivers here will be giving you good tips and hints to help. I'm just giving a peek into the disease and how we patients might view things just a bit differently. Again welcome to the forum. Take care, best of luck and hang in there.

By karolinakitty On 2010.06.08 01:01
Hi and Welcome to the forum .... as LO said you didn't give a lot of info but the eating and loss of sleep i can help you some slant on

Loss of sleep .... we started to take melatonin, in some PWP the melatonin that makes you go to sleep gets messed up. You can get it in Wally World or any pharmacy. Of course, first and foremost discuss it with the doc, but it has done wonders for us.

Appetite .... i never know from one day to the next what time to have dinner. I have made a regiment of lunch is at noon, come hell or high water, but dinner goes according to whatever he feels, most times we eat seperately, because i have gained way too much weight over the last year eating after 7pm. If i am having a special meal, like our steak Sunday, then we'll eat together but most times he eats whenever he's hungry. His problem is that he never ate a whole lot for dinner and now just doesn't seem to be hungry. Not too long ago we dealt with severe nausea due to meds, but after getting that resolved, now it seems that hunger either doesn't play into his mind or he just isn't hungry. He hasn't lost much weight because he has his snacks he eats at around 3am..... this seems to be common with quite a few on the board here..... As long as he isn't losing considerable weight or gaining lots of weight .. then i would resolve myself to just letting him go and adding something like Ensure to maintain.....

If we knew what meds he was on there maybe be issues with those. There are all sorts of bad side effects involving loss of sleep and eating with most PD meds... If you go to our search at the top of the page, you can enter whatever words and you will find something that's been posted to help you help your dad ......

By lurkingforacure On 2010.06.08 09:54
We are very proactive but I am sadly realizing that I can do very little to help with sleep or food. My husband has crazy sleep and will be up at all hours of the night, we tried melatonin, sleeping pills, nothing worked. Sometimes he will sleep four hours straight, this is huge for him, but wake up and feel like he didn't. Or he can take a ten minute nap and wake up feeling like he's been asleep for hours. It's the damndest thing and I have not been able to figure it out, the docs just tell us it's part of the PD package. I have read sleep disorders are one of the very earliest signs of PD and are very very common.

Food: another very tricky area. You probably already know protein with meds is a big no-no (although I know some PWP who eat eggs with their meds for breakfast and no problem). You can google PD and protein intake if you need more info, there's lots out there about putting most of the protein at the end of the day.

As for us, my husband splits his meds up into two hours increments during the day and has to eat around that schedule. It's pretty impossible. If he eats at all during the day, he has these tiny snacks but of course is ravenous later. I can make a lovely dinner, the whole shebang, and we'll sit down as a family to eat....only to have him in the kitchen literally in thirty minutes looking for something else to eat. It's hard on the kids because I don't let them snack after dinner but then they see their dad and are thinking...but HE'S eating like a horse why is that OK? He will graze this way for hours, and even gets up at 1am, 2am, 3am for a snack. I have come into the kitchen in the morning to discover that during the night he has made oatmeal, guacamole, soup, tuna salad, it goes on and on. I wish he would make the kids' lunches for the next day while he's in there!! He of course has gained a lot of weight which make him very unhappy but what can you do? He is starving after not eating all day and I can't blame him.

I have also noticed this: my husband never ate sweets, never liked them. Now, four years into PD, he actually asks me to get ice cream, it is so weird. I have read a few places that some docs believe PD and/or Alzheimer's are a third/fourth type of diabetes, and I wonder if they just might be right in some regard. Or maybe it's that ice cream is a comfort food, and my husband is so miserable he is looking for any comfort of any kind wherever he can find it. But I still find it odd, since he never got comfort from ice cream before, at least not before PD.

I'm sorry if that's not much help but that's our experience. PD affects every aspect of life and it is very difficult to constantly be adapting. Plus, I have found that what might help one day does not help another.

Oh, one thing that can help: exercise. Of any kind. It's very hard to get them to do it, my husband has huge pain and motivation issues, but everywhere you read you will see that it does help in some way. I would definitely try to get my dad moving. Good luck.

By karolinakitty On 2010.06.08 13:25
Hey Lurking .... Maybe we can get our guys at 3am to make your kids lunches, prep dinner for the next day .... and ...well i could make a list!!!!!!

I wonder too sometimes about this 1am-3am feeding frenzy.... now i know both our guys are on different meds, so what brings on this appetite at 3am? Is it just the transmitters are so broke that it causes this frenzy .... It's funny when i go to the Dollar General each week and buy about 10 packages of cookies, the girl asked me if i have a lot of grandchildren or run a day care, i said No, my guy has PD and is hooked on sweets. Number one thay are cheaper there, and while he is in his feeding frenzy, the dogs have to have a treat too.... they get vanilla wafers.... i always bake something at least every other day, there is ice cream in the freezer and i make my own choc. syrup or hot fudge, When i do a stock up at Costco i get candy bars, ,sweets, sweets, and sweets,then i end up eating some of it.... however not at 3 in the morning...

Prior to PD, his transmitter was broke from the brain injury .. he really didn't know when he was thirsty nor when he was hungry .... but now .. yikes ... he's either ravenous or won't eat .....

By parkinit On 2010.06.18 13:17
Amazing how I find things that are thought were unique to my spouse are symptoms of the disease. My hubby is a sweet-a-holic, too! Sometimes he will sit down and eat sweets for a meal. He used to snack a lot at night - I cringed every morning going to the kitchen, because I wouldn't know what would be left out (milk, juice, leftovers) or what would be on the floor. The counters would be smeared with what appeared an attempt to wipe it down, but it just smeared jelly or whatever was spilled onto more counter space. My spouse was up until 3 a.m. this morning - said he couldn't sleep. He slept until 9 a.m. and most afternoons he now takes a 2 hour nap - whether he gets sleep at night or not.


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