Are you always honest about how you’re feeling?

[Robert Harris]

No. If I were always honest when someone asks, “How are you today?” or “How are  you feeling?” much of the time I would have to day, “Wretched, exhausted, tired, having some more balance issues.” Other times I would have to say, “I’m sleepy because my myoclonous kicked in a 3:30 this morning and kept me awake. I couldn’t move around it because I tossed and turned so much that my blankets were all out of order.” Or I might have to say, “Well, my sciatica and my spinal arthritis ganged up on me and it took awhile for the meds to kick in.”

During the day, if I miscalculated (or ignored) my medicine timing and  I took my pills too close to eating a hamburger, chicken tenders, or other  slug of protein, I will be thrust into an off-time as the protein destroys the dopamine. New meds or an extra boost to counter this usually takes an hour or more to kick in.

But let’s be optimistic. Say I ate fruit for breakfast, modest protein for lunch, well timed to be at least two hours before or after eating any protein, took all my meds on time–am I good to go? Well, let’s think of that literally. If I haven’t been “good to go” and “gone” for more than 24 hours, I get an uncomfortable, apathetic, thought hindering feeling, almost as bad as an off period. And I know that it’s because of constipation, but remedying it is the problem.

Bottom line, then is like this:

Friend: “Hi, Bob. Great to see you. How are you doing?”

Bob: “Oh, I’m  maintaining. How are you?”

etc.

As opposed to:

Friend: “Hi, Bob. Long time. How are you doing?”

Bob: “Well, my back hurts, my arthritis is shooting nerve pain down my leg, I didn’t sleep but three hours last night because my myoclonus kept jerking my arms and legs around, I just got over an unusually weak off-period that made me feel so exhausted I could barely make myself get out of bed, blah blah blah. So how are you doing? Hello? Hello?”

Okay, I am exaggerating, but only a tiny bit. And I’m leaving out some of the things that happen. The point is, people ask how you are feeling as a bid to begin a conversation or to be polite. Most of them don’t really want an answer. Consider:

Uncle Joe: “Hey, Bob,  how’s it going?”

Bob: “Well, my spinal arthritis is getting so bad I can stand up for only a minute or so before the pain makes me sit down.”

Uncle Joe: “Good, good. Say, have you eaten at that new Chinese place on 14th Street?”

A number of therapists say that we have a duty to be (that is, act) happy and tell others that we are fine and well. They say that it goes against t he rules of social etiquette to burden strangers  or mile acquaintances with our griefs and pains. Of course, it’s a different story when talking to you doctor.

But what about talking to your spouse or adult child?  Suppose, every time your loved one asks how you are feeling, you say, “Weak, tired, my leg hurts, and I’m totally depressed.”  It won’t take long for compassion fatigue to set in. You will be burdening your spouse or child with sorrowful information they can do nothing about.

So we see our doctor for some medicinal help with depression, or if not, whenever our loved one asks how we are doing, we say, “I’m feeling a little better than earlier (today, yesterday, last week).” If  the inquirer is someone monitoring you, tell the truth–do you feel a little better, a little worse, suicidal, completely happy?

Remember that the symptoms of Parkinson’s and the side effects of the medicines can be the same, so in he  case of depression, it could be just a part of your disease, or it could be caused by one or more of the meds you are on. If it or a  part of it is caused by your meds, work with your neurologist to locate the source and change your med cocktail.

[Toni Shapiro]

I often don’t tell the truth.  People must be sick of hearing  me say “I’m struggling these days” as opposed to my big smile and upbeat conversation with them just a number of months ago… so I lie. Sometimes I just leave it as “well, today could be better” rather than going into detail, as some days my list is incredibly long ,and then go straight into asking them how they are to get off topic. I don’t want people to avoid me.

I can relate to much of what Robert said.  I am lucky that I have a PD counsellor who I speak to every two weeks and I can tell her anything.  I feel very fortunate to be able to vent with limited guilt.

[Mary Beth Skylis]

Robert- As difficult as a topic as this is, you managed to make me laugh with your response. Yes, I think you’re right. Many people don’t really want an answer. But I love that you seem to have found a happy medium where you’re not being dishonest. But maybe you’re not going into all the details either. Do you feel that you can be honest with particular people in your life? Or do you keep the process to yourself?

 

Toni- I love hearing your thoughts. Thank you for sharing. Sometimes I wish my Dad (diagnosed in 2013) would share a little more with me. I can tell that he struggles on some days more than others. And I wonder if sharing the burden might ease it? I think I just want him to know that he isn’t alone — even if I don’t quite understand the depth of what he’s going through.

[Rev. Charles D. Good]

Robert Harris.  I absolutely love your response to the question.  While I may not be as far along in the progression as you are,  there are many things you have shared that are absolutely true for me.  Thank You for being honest and sharing.

[Sharon Fisher]

<p style=”text-align: left;”>I am not always honest. In fact hardly ever. I don’t really have anyone I can be that honest with and it feels like most don’t want to hear it.</p>
I feel like I’m being whiney and I don’t want to turn people off.

Most people approach me with the you look wonderful statement. They just are uninformed. I can’t give seminars about how it really is. Lol!!!

[Mary Beth Skylis]

Sharon – I’m sorry to hear that it’s hard to be honest. I find that my Dad is rather quiet about his day-to-day struggles too. But I think he benefits from having a community of friends who have Parkinsons too. Sometimes he doesn’t have to express himself because they understand.