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Topic a cause of confusion and some resentment Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2013.06.12 00:11
Living with Parkinson's disease for so long myself at times I read posts and then reread them and find things mentioned that I passed over or over looked. And at times I'd like to give Myself a kick in the pants for it! (see some of you caregivers aren't the only one's thinking I deserve a good swift kick!). I apologize for these oversights.

One that's arisen many times and I neglected is the "off/on" phenomena. Back in the early days before Carba Dopa when L-Dopa was given alone it was more pronounced I think, then when first noticed the medical field's first response to it was "malingering" of the patient. A patient would go from being bed ridden to functioning at times like a light switch was turned from off to on. From immobility to up and walking around! Their statements were of the kind the patient didn't want to do a task so they faked not being able to then could do something they wanted to do or enjoyed! Now days it seems more subtle not quite as extreme. But it still happens and can present as extreme as throwing a light switch. Over time with this disease We patients exhibit this phenomena as the levels of our medication rise and fall during doses. We may need a coffee delivered to us in a "flat" or "down" spot in our medication only to 15 or 20 minutes later be able to get up and go fix another cup for ourselves because the medication has kicked back in. Over time the fluctuation of levels of our medication increase as our disease progresses and our medication and adjustments try to play catchup or keep up with the underlying disease. This can cause care givers confusion and frustration as it did with Doctors when first encountered.

I hope I have explained and given at least a hint of what might be bewildering to our caregivers and my fellow patients as well. It is hard to explain as it is frustrating to patient and caregiver alike and if one hasn't heard of it or know a little about it can cause resentment in each. Again I apologize for not addressing this problem before but I guess as they say better late than never and for those just joining us here on the forum it's a heads up for later encounters of it. Take care, best of luck and hang in there.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By karolinakitty On 2013.06.12 08:27
That's a good subject Al...

On/off times are rarely mentioned amongst caregivers...coming from both sides now I can say i have seen jim in his times and now me....

Often when the frustrated me comes out it has been during an off time as I try and medicate properly(?) ... which may or may not

While at work it is quite noricable and since everyone knows me and knows our PD they'll it close to med time???? It's nice to work with people we have educated about PD...while they won't baby me they will step up and say hey....need some dope...or are you off? you gonna make it???

Sometimes stress, change in routine and amny various things will cause off times...sometimes a pwp had too much protein and pills aren't working right...maybe that's where the mood swings come in too...just having an off moment....

By Imtired2 On 2013.06.12 14:24
Your post may be directed at me because I complain about my brother taking advantage of me. I appreciate you taking the time to explain what he is going through.

Some days, I got so angry at him because he wanted me to wait on him hand-and-foot. I just couldn't understand why he couldn't get up and walk to the kitchen, when he did so only one hour ago. It was frustrating for both of us. Some mornings he would get out of bed without my help, but couldn't do it the next day. Some evenings, we would go to bed by himself, but I had to put him to bed the next day. He is 6'3" and has lost weight down to 193 pounds, so it is difficult for me to dress him, put on his socks, pull up his pants, get him in and out of the shower, etc. He cannot reason well and cannot make decisions for himself.

We tried but could not find a pattern in his behavior. He takes his meds on time, he does not eat protein within one hour before or after the meds. We try to eat fresh veggies and fruits. I encourage him to walk as much as possible, even if it is 20 feet and back, because I don't want the Parkinson's to advance.

My husband would try to soothe me by saying, 'He can't help it.' But it wasn't until I read JCOFF012 posting that I really DID understand. He didn't ask for this to happen to him. He is trying, to the best of his ability, to be his normal self.

I no longer have a rage toward him. I can deal with him in a much calmer attitude. We actually joke a little and smile once in a while now too. I'm feeling more at peace with it all.


By jcoff012 On 2013.06.12 17:42
Dolly, Al (Lohengrin1), rarely directs a post at a particular person...and then, usually in defense of that person (ah, we all remember that one! LOL). Please don't take his comments that way. You have enough to do then to worry about what you post here. We all understand the need to get through the trials of this PD.

I wish there was a definitive book about PD, but that really isn't possible with everyone reacting to meds differently, etc. All we do here is share, comment, and vent...

We went through 22 1/2 years with his Mom's PD, and now we are going through this with my husband...and it is different. While his brothers and sisters tell me, "Mom did it THIS way..." I just listen and accept their advice, then move forward...for, HIS is different...

Al sees PD from a different perspective and has been through a great deal...I value his insights, but even he and I don't always great respect comes the comfort for acceptance of someone's opinions, and I have learned that having Al in my life is extremely helpful.

KK (Karolina Kitty) has also started posting again, with sad news, but again, with a different insight. We all want her to know we are watching out for her as she faces a new twist in PD.

Again, don't read too much into any one here has any problem calling out someone! So, unless it says, "By the way, Dolly..." Take the advice/comment, or leave it...LOL...just don't take offense! Hugs and glad to see you are taking new turns, too...Jane ;)

By carman96 On 2013.06.12 18:55
Thanks Al for the explanation.
What bugs me is when a friend or relative see him for a short period of time and say "he isn't as bad as I thought he'd be."
They only see him at the best of times. He is usually more "up" when he gets visits because they are usually in the middle of the day and I think he has a little spurt of energy then. They don't see him when he crashes afterward and has to sleep most of the next day.They don't see him struggling to get up in the morning or go to bed at night, that he can't dress himself or put on his shoes by himself. They say I am doing a great job taking care of him and say thank you for taking care of their brother/father/friend. They have no idea and I hope they never have to go through it themselves.
Sorry I went on a rant about this but it wears on me.

By LOHENGR1N On 2013.06.12 19:20
Dolly, As Jane said I don't direct my posts at any one individual, (on the rare instances I do then it is clear and I use their names) the subject and confusion over this subject has arisen many times here. It's to be expected in the past many times I've tried to give voice to other patients who for whatever reason couldn't explain or themselves didn't know what or how something was going on. As I said I hadn't addressed what could be the cause of the problems and frustration to caregiver and patient so I explained it. Not aimed at anyone my friend. Just tossed it out into the tempest of Parkinson's problems. Take care, best of luck and hang in there.

By jcoff012 On 2013.06.13 00:36
Al, KK, Carman we have all posted about this is one form or another. I remember asking the same questions about on/off times. It is the one area of PD that I find most disturbing...the caregiver vs. on/off times...and the perception of the "true" state of the disease. Sometimes, I feel our oldest daughter thinks I am exaggerating about her Dad. We haven't seen her for over a year now and when she does see him soon, maybe then she will actually see how it really is now. Until then, I simply do not mention how he is doing. She wouldn't accept it, anyway. Sad. At the time he needs her the most, too...

I think the best way to get through this is to do as the recovering addict must day at a time. No promises. No expectations. Not reading into changes as "stages" and "signs" of advanced disease. Just live the best we can, as we can.

That said, I wish for us all the compassion we must muster and the strength to keep going until the dx of PD is a thing of the past...and for that, I have great hope. You see, one thing that ISN'T discussed a great deal really preys on my mind in the darkness of a bad night...our children and grandchildren...We need a cure for this as much, if not more, for them. Since we are facing the reality of two immediate family members with PD, the prospect of the genetic link cannot be least not by our family. I pray for all of us, and our little ones as well.

KK, your insights will be amazingly helpful to many. I hope you do not weary from all the demands on your life. Take care of yourself. If the odds are so great that this happened to you, then perhaps the odds are also so great that you will be able to live well a long time and give service to others along the way. I wish you well, as I am sure everyone here does. Hugs and love, Jane

By parkinit On 2013.06.13 10:08
This is a great topic; I agree! One of my nighttime caregivers for my husband just asked this morning about helping him roll over on his side at night. He said, "Then he rolls on his back and is able to roll over himself a few minutes later!" I know the caregiver was presuming that my husband was just trying to get him out of his chair and give him something to do! LOL

Anyway, it was a great discussion as I explained that it could be several things and also pointed out that my husband is independent to a fault normally and would not ask unless he really needed help. So it could be:

1. He was very stiff and the one roll over helped loosen him up.

2. He forgot how to roll over and by doing it once, you helped remind him how to do this.

I explained that more and more my spouse is forgetting how to do simple things and he has acknowledged a few. Here are some of his comments:

1. Sometimes I forget how to sit on the pot to go to the bathroom.

2. Sometimes I forget how to walk.

So knowing this, I walk him through (verbally) how to do these things.

Techniques I've learned:

1. Walking. I always walk facing him (walking backwards) and holding his hands. I begin by rocking back and forth from side to side in place until he matches my rock and then after a few rocks he is able to lift his feet. I do many verbal cues along the way like "put your foot over that tile line," or "try to touch my toe with your toe."

2. Potty time. Sometimes he would make a complete circle (like a dog settling in his bed for the night) before sitting on the pot. He would do this because he couldn't remember the best way to seat himself on the pot. Cueing, I now say, "Grab that bar with your right hand, let me hold your other arm, let's ease down really slow . . . "

The more we realize they need help, the more we can help fill their gaps.

KK - I believe I understand through your post that you have PD now, too? I'm so sorry if this is true.

By Imtired2 On 2013.06.13 15:25
Jane and Lohengr1n,
Please don't think I was upset over the explanation of on/off given by Lohengr1n. I guess I sounded offended, when I used the words, "directed at me", but that was not the case. I appreciate all the advice and expertise I find on this forum. I'm muddling through this and just want to be one of the gang.

By LOHENGR1N On 2013.06.13 15:49
Dolly, no problem. Plus You're one of the gang here anyway wether you want to be or not, lol, once PD puts you here You're stuck with Us ;) a member of our family (gang) :) --Al&Tess

By jcoff012 On 2013.06.13 16:21
Lol, Al, good response...I concur!

By Imtired2 On 2013.06.13 22:29
OK, good. Thanks for your hospitality. LOL

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