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Topic Symptom of PD or reaction to meds?? Go to previous topic Go to next topic Go to higher level

By Mkwbroom On 2013.04.05 16:35
My dad was diagnosed with PD over a year ago. We've struggled to find the correct combination of meds (PD meds, BP meds, and depression meds) to get him feeling good and active again. Recently, I've had concerns about him with my 2 year old. I've decided that I cannot risk leaving my dad in charge of my toddler due to his poor judgement and defiance. If I tell him, "don't feed Luke a ribeye steak in case he chokes", he will try to feed him steak in defiance of my orders. Once, I told my dad "No, you may not ride Luke on your tractor". He then physically forced Luke out of my arms and took him for a ride on his tractor, while I followed behind in tears. Just a couple years ago, I would not have worried about a tractor ride, but my dad has gotten clumsy and less steady recently. He's always been a strong man who built homes for 50 years. I think he struggles dealing with his recent physical limitations. I've always adored my dad and been very close to him. His recent behavior with my child surprises me and hurts. Is this Parkinson's or medication? Or is his poor judgement totally unrelated to his disease? Has anyone experienced similar-typed situations?

By LOHENGR1N On 2013.04.05 16:50
Mkwbroom, Welcome to the forum. It's hard to say if it is med related because you don't say what he's on. Many Caregivers here will tell you of horrors from requip and meripex and such. My question is why is He on medication so soon after diagnosis? Many Doctors hold off medicine at the begining. So it could be He's getting too much from the start. Also was it His Neurologist who prescribed the med's? Sorry I can't help much with this but just a bit more info would be helpful if you feel comfortable providing it? Again welcome to the forum you've found a great place for help filled with caring people. Take care, best of luck and hang in there.

By McCall On 2013.04.05 17:45
It could be the meds but also likely the illness itself. and I think it is irresponsible to question why your dad is on meds. Most top Movement disorder specialists DO in fact put patients on Meds at or soon after diagnosis. My husband was put on immediately and good thing too.
Even if he were younger I suspect he should be on meds, but you say he has been building houses for 50 years that makes him plenty old enough to be on meds, unless he started building them at 2 or something. All that said it would be helpful to know exactly what he is taking and how much.

I would say that you should not leave your child with your father unattended. Better to ere on the side of caution, then not do so and have something happen.

By parkinit On 2013.04.05 19:04
I always told those who are close to us that when my PWP feels the best physically, he makes the worst mental decisions. He makes poor choices for himself and has made choices that endanger others as well. I have had to warn caregivers to NOT ride in the car with him, because, somehow, he has convinced a few to ride in the car with him even though he has not had a driver's license for 4 years now. It appears the only time he tries this (mostly) is when I'm gone and when he tries to take advantage of a caregiver not knowing that he doesn't have his driver's license.

So, I would say, YES, be wary, and it could be meds. If he is taking any dopamine agonists, these are the worst - even in small doses - for us.

By Mkwbroom On 2013.04.05 19:35
Thanks to all for the responses. My dad is 69. He's had a tremor in his hand for several years. He has gone to doctors several times to be checked or diagnosed and for some reason, doctors were reluctant to confirm PD until recently. For a while, we were told it was an essential tremor. But now we have a confirmed diagnosis of PD, finally. And he's possibly had it a very long time although its been recently diagnosed. He sees 2 neurologists, one was recommended by the other, but he sees them both. I don't know dosages, but he's on sinemet and propanol. We had a bad reaction to mirapex. He got VERY confused, seeing imaginary bunnies and talking out of his head. My mother is a wonderful caregiver, keeping up with all his meds and dosages. This is why I'm not aware of exactly how much he takes of what meds. It breaks my heart to tell him he cannot be left in charge of my child. He ADORES his grandson, but I must make my child's safety the priority. I guess I just needed to know that this is either the disease or the meds and NOT my sweet daddy.

By Mkwbroom On 2013.04.05 19:37
Also, just to clarify that I'm not overreacting... I gave only 2 examples of why I'm concerned, but I have a dozen other situations that I could have listed. It seems each day, he gives me a new reason for concern.

By LOHENGR1N On 2013.04.05 20:37
Mkwbroom, Okay thanks for the info. Sometimes a regular Dr. will prescribe a medicine like Mirapex and not be aware of some of the side-effects. You have me stumped right now. The propanol can cause mood swinings in some people (I'm guessing he was prescribed this for essential tremor? I know I was by my regular doctor before seeing a Neurologist who kept me on it as it helps with tremor.) I really don't know what's going on maybe He's having a hard time with the diagnosis? Depressed? Being told P.D. instead of essential tremor he might be rebelling and not even be aware of this? I hope others on here can come up with some other ideas of what's going on for you. Meanwhile I'll keep running it through my mind to see if I can find something that makes sense of it. Take care, best of luck and hang in there

Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By Reflection On 2013.04.06 07:28
Your description of "defiance" resonated.
Especially your description of the tractor ride.

When my husband was overmedicated, he'd drive too fast - with me and the kids in the car. If we asked him to slow down - he's speed up, to show us that we couldn't boss him around. It was horrible. That's only one example of the "defiance" - it extended to many areas of life. So, if I said dinner would be at 7, so the kids could do their homework, he'd get home anywhere between 8-10, wouldn't call, wouldn't answer his cell - and be nasty if we gave up on him and ate without him. (In retrospect, I should have just served dinner at 7 every night and avoided the drama-hindsight!)

Now, off the dopamine agonists (requip, mirapex) and on a better dose of dopamine, he no longer does this.

I believe this "defiant" mode can be medication-induced - that they get to thinking that loved ones have to obey them and keep them happy, or they will hurt their loved ones to keep them in line" - but it is scary, draining, and dangerous.

Good luck. It's scary, and hard. But from my experience, there's no way a 2 year old should be left with someone in this mode. Their judgement is badly impaired.

By Mkwbroom On 2013.04.06 23:06
Thanks to each one who has responded. I've never taken part in a forum until now. I'm very appreciative of your taking time to respond. I still feel very new to all this, but as I learn more on this journey with my dad, i hope to be able to help and encourage others as you have done for me. Hearing similar stories and input has given me some validation for my concerns and has confirmed what I had hoped: that my sweet daddy is not to blame, but It's his dreadful disease along with some tough meds. Prayers to all of you on similar journeys.

By Pearly4 On 2013.04.07 07:19
Disease or medication,it really doesn't matter. My mother never would have hurt a child deliberately but even an accident has to be avoided where a child is concerned. When she was at the point where falls were frequent, she would insist she was perfectly capable of carrying the babies (her great-grandchildren) and try to do so. Even with her physicians chiming in to tell her she couldn't do it, she'd try until we physically removed the children from her arms and told her she couldn't have them back until she sat and stayed seated.

Bottom line for me then (she has since died) -- whenever there's a change in the PWP or problem discuss it with physicians in charge (you can inform doctors by letter even if he won't let you attend appointments) to rule out disease or medication involvement. You can't always protect him from himself, but you MUST protect your child.

By Rempt2 On 2013.04.07 10:52
my husband had an increase in sinemet this week from 5 per day to 10 per day (2 every 3 hours) plus an extended rlease at night. The reason was he wasn't sleeping well and he was having violent shaking during the day. The last few days his mental stable periods have become less. He gets very defiant the rest of the time and still has tremors (less violent) and very ridgid limbs. Now I can't predict when he will have this mental state. I prefer his state of mind previously. Less meds may be better.

By lurkingforacure On 2013.04.07 12:04
Do not forget that as you ramp up meds, you are also ramping up side effects....

You may personally not see a side effect of a given drug until you take a certain amount of it or combine it with some other drug. Increasing the amount of a single drug, alone, can have huge side effects....my own mom started having major heart issues when her dr. upped her diaretic...no other changes besides that. It was very scary, and he was rather clueless about the whole thing. When I talked to him about it, he actually asked me if I had a medical background (ha, not even close)...so you have to do the research and be an active advocate. This is not a time to trust in the medical profession, sadly.

By Rempt2 On 2013.04.07 15:40
Sad yes, but his neurologist seems sincere in helping. He has been very responsive so hopefully he will listen when I tell him these side effects. Relationships with drs should be a partnership with families. Some drs won't listen. In such a case move on and find somebody you can work with. today we had 2 hours of quality time where I could actually converse with him. He's in bed now with shakes. Waiting for these to subside and he can have supper. the last 2 weekends we've been able to get outside briefly. This weekend it wouldn't work with his behavior.


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