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Topic downplaying symptoms Go to previous topic Go to next topic Go to higher level

By lis808 On 2015.07.06 21:01
Wondering if anyone has advice about how to delicately approach my father's situation. He is eternally optimistic (which is wonderful!) but perhaps too much, even with his own doctors. He is fiercely independent, and seems to often downplay his symptoms - he will not disclose symptoms to his caregivers until he absolutely needs help. How do I communicate that trying not to worry us is not in his best interest without putting him on the defense? I don't know how to broach this without him thinking I am "meddling" in his business.

By Debs On 2015.07.07 02:56
Hi lis808, I have the same issues with my dad and my husband. Dad doesn't have PD but has diabetes and is 81, very independant and an optimist. Always saying how great he feels while neglecting his diet and ignoring what doctors say. Even says he looks better than his doctor! I've come to the conclusion that his optimism and drive is what keeps him going. And he is happy. He lives in another state so it's very difficult.
Not sure if it's possible for you to go with your dad on doctor visits or maybe talk to his carers on his behalf.
My husband has PD. He's an optimist too and ignores his symptoms. I have found going with him on doctor visits is the only way to get him the help he needs. Otherwise he plays down how he feels.
Don't know if this is of any help. But I certainly know what it feels like :)

By SparkysGal On 2015.07.07 08:24
I too go with my husband to his appointments with his neurologist and primary care giver as well when possible. The extra pair of ears is helpful and I bring up topics he would otherwise brush over. I know it isn't always possible but I highly recommend it if you can.

By lis808 On 2015.07.09 19:20
Thanks, all! Luckily going to occasional doctor visits is an option - we are slowly trying to get him to agree to a power of attorney for medical, which will allow greater access to communication with his doctors. I agree - its his optimism that keeps him going!

By LOHENGR1N On 2015.07.12 12:22
lis, It's hard to answer your question without knowing a little background. Is he on med's, how long has Your Father had P.D. what symptoms you're concerned about. You state he won't ask for help unless he really needs it. Being a patient myself that's good from my/our point of view. We have to do things ourselves to keep our feeling of self worth. Many caregivers err at the start by taking over too much because they don't want to see Us (loved ones) struggle doing things or because it can take us longer to do things. While those are noble reasons this is a long, long duration illness and what you take over doing you will be doing for a long time so caregivers have to kind of step back and fight the urge to take over everything. When tasks become harder we can sometimes surprise you with inventing other ways to get things done and this problem solving helps our mental status also. Generally if we down play symptoms it is because regardless of how it looks to observers it's no big deal to us patients. One major fact is we are never going to be "normal" or pre-Parkinson's functioning again. Most of our medication has side-effects that can in many instances cause other problems while easing the problem we're trying to aid. Remember the fact your Dad will ask for help when he needs it, many of us patients don't. So you're ahead of the game there. It is a long walk (struggle) with this disease and those that take care of us are caught in a neither land where the patient seems to down play symptoms and want the doctor to know about them. I can't speak for other Doctor, patient relations but for me, if I'm discussing a problem or symptom with my Neurologist and I dismiss it or down play it my Neurologist defers to my view which is "but I can live with it" or if it is not major or bothersome enough to me to address it then we'll just keep an eye on it for now then. The Neurologists have a limited arsenal of treatment and drugs to use to help us and as I said they all have side-effects which we have to balance against the symptom. As I said it is a hard question to answer for you so I hope this broad view is of some help. Welcome to the forum, please post if you have anymore questions there are many great people here who are glad to help when they can. Take care, best of luck and hang in there

By jcoff012 On 2015.07.13 11:56
Hi, just a short response for now...My husband is a very positive person, too. It is often hard to stand by and watch as he struggles to appear "normal". He says it males HIM feel better to do as much as he can. Right now, though, he has become obcessed with exercising. (See another post).

As for downplaying with the doctor, he does this, too...in fact, if I hadn't been IN the examinations office, he would not have mentioned his sleep disturbances...but, because *I* disagreed with his "no problems" comments, the Neuro prescribed a med to help him relax at night...and I sleep better!

Since day one, I have gone with Carl, my husband, into the exam room. His neuro insists that I participate in the decisions!

Good luck!


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