PD Stole My Smile

imageSerotonin, norepinephrine and dopamine are all chemicals that are involved in regulating mood, energy, motivation, appetite and sleep. In addition, the frontal lobe of the brain, which is important in controlling mood, is known to be underactive in people with Parkinson’s. It’s no wonder that Parkinson’s patients may look sad. We have every right –our brain is messed up. But looking sad and feeling sad are two different things.

PD recipients have three strikes against them in the mood-controlling department, the first mentioned above. The second is that we can sometimes wear what is referred to as a ‘masked face’. This is not an optional ‘mask’ they wear — the possibility of depression being present. No, it is one of the gifts that Little Monster (aka PD) gives to us. Because of the disease, the PD patient has no control over the facial muscles that have decided to give in and not hold our smiles anymore. So naturally, because the majority of the public hasn’t a clue what’s going on behind our faces (and some PD’ers I’ve met), our lack of expression can often be (and believe me, it is) misconstrued as a sign that we are sad or depressed. This is not necessarily true.

We have this other part of our brain called the frontal lobe, an important place in the brain that helps to control moods. The problem here is that for PD patients, it is known to be underactive, which gives us the third strike against control over our moods.

I have been asked several times, “Why are you so sad?” or, “Are you depressed?” or, “What’s wrong?” I’m not sad. I’m not depressed. In addition, nothing was wrong until I was asked all those questions and then began wondering that maybe something was wrong. Maybe there is something I’m supposed to be sad or depressed over and I just haven’t figured it out yet. A surefire way to get someone feeling low (at least, for me) is to tell him or her how ‘low’ he or she looks. Works every time. It’s called the power of suggestion.

I was sitting with a friend the other day, listening to her tell me about things in her life. As far as I knew, nothing had changed in my appearance. She then asked, unexpectedly and interrupting herself, “Are you okay? You look like you’re going to cry.”

I was fine. However, then I questioned myself. Was I fine? Why do I look so sad to her? Do I feel sad? Am I going to cry? Should I cry? Is there something to cry about that I missed? Alas, after a thorough examination of my brain, I concluded that yes, I was fine. I didn’t feel sad, but for reasons beyond my control, I looked sad. I chalked that up to Little Monster stealing my smile.

We can try and look on the lighter side of this issue, but for some PD’ers (and others), depression is not only very real but it is a real battle. Dr. Anthony Santiago once stated that in some PD cases, depression is the first symptom of this disease. Through the course of living with PD, it can continue to be a symptom for the reasons stated above, in regards to the chemical make up of our brain. In addition, the patient is daily staring a chronic illness in the face. That in itself is enough to cause depression.

So, what to do? Make sure you are being optimally treated for PD. If you’re not receiving the correct medications for you for poor sleep, constipation, fatigue, freezing episodes and more, these can contribute to depression. That is why you need to discuss anything that may be relevant or not with your physician to get the best care. What we think may not be associated with PD, may very likely be.

It goes without saying that regular exercise is an important part of being at your best, not only physically, but emotionally and mentally as well. I find that if I’m striving for better health and increase my exercise, I tend to make better choices when it comes to food. I look at it like – I just walked a mile and I’m not eating that Butterfinger and cancel out what I just accomplished.

It’s a proven fact that if we get up and get going we’ll feel better mentally, as well. Depression means just ‘how it sounds’. It depresses the individual within whom it dwells. It saddens them, makes them feel discouraged and disheartened. While this is happening, the individual is focused on wanting to feel better, to feel something. More often than not, the individual struggling with depression focuses on himself and how bad he may feel.

Chip Ingram, former Walk Thru the Bible president, once told a story of a doctor he knew who was treating a patient for depression and that nothing he seemed to be doing was working. He finally told this patient to go to a certain room in the local hospital and read to the cancer patient in there each afternoon. Within a week, his depressed patient’s spirit, emotional well being and mental outlook had improved dramatically. The once depressed patient realized there were others worse off, by taking his eyes off himself and put them on another.

There are, however, many cases of depression that don’t fit into that theory of treatment, some due to chemical imbalances or injuries that are difficult to treat, even with medication. These need the regular and constant attention of a qualified physician and/or psychologist. Sometimes there are just no easy answers for treating depression and since each case is individual and unique, so are the treatments.

If you feel you tend to get depressed at times, or are feeling sad, think about joining a support group, if you haven’t already done so. Start a hobby. Get involved in a recreational or social activity. Dance is becoming more popular and well known for its benefits to PD patients, in terms of exercise and is a great way to meet new people. I’ve never met a depressed person who was dancing.

Many effective and safe medications have been used to treat depression in people with PD. If you haven’t already, discuss your concerns with your doctor and ask if another treatment might suit you better.

Remember, as a PD patient, caregiver, or friend, progress is being made every day towards finding a cure. Until then, get the best treatment you can, tailored to you. Your doctor can only treat you as well as you are willing to confide in him with what you are experiencing.
Living with PD, offering support and encouragement while pointing you to great resources are what we’re about at Parkinson’s Disease and Deppression. Please feel free to visit us at: http://www.parkinsonsjourney.com

When You Feel You’re Slipping Away

Yellow Aster Photo by Sherri Woodbridge
Yellow Aster
Photo by Sherri Woodbridge

This past year I could feel myself slipping away. Tormented daily with the thoughts of how ‘it’s’ going to happen, when is ‘it’ going to happen, and what’s ‘it’ going to look like when it happens (‘it’ is in regards to my having Young Onset Parkinson’s disease). It can feel all-consuming.

Add the natural element of depression that you get for free when you have PD and you’ve got yourself the beginnings of a devouring darkness that vies for your joy, your hope, your soul – your very being.

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you find easy to believe. Lies that others have spoken to or about you. Lies you tell yourself. You believe these lies from what you know is Truth because they tend to be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to those around you as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.

I am drawn back to not being sure if I can hear or see or even know the truth in the midst of the darkness I seem to, at times, have been enslaved in this past year.

My greatest struggle seemed to be with my disease. I had a rough beginning to my year when I had to accept the fact that the my neurologist, who was not just my primary doctor with this disease but a friend, would not be able to continue as my doctor as he had for the previous ten years.

I didn’t want to start over. He knew me. He diagnosed me correctly. He told me I didn’t have Lupus. He told me that I had Young Onset Parkinson’s disease and that he would be with me until the very end. Now,  I was having to accept our ‘ends’ looking different than I had expected.

A year ago I walked into his office – still independent. But it was a year ago plus – that I began to think this thing -this disease – was becoming a burden on those around me. The medical bills that came in the mail, the distance to get to my doctor. The whole – “you’ve got Parkinson’s disease” thing. Me.

I was sinking further into darkness.

Why was it so hard to let go? I constantly asked myself that question. Was it because he wasn’t the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become not just my movement disorder specialist but a friend? Was it because when he said he’d be there through my 7 hour brian surgery, even though he didn’t have to, he was? Was it because when they’d wake me during that surgery to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s ‘it’ going to happen, when’s ‘it’ going to happen and what’s ‘it’ going to look like – you know – until the end, like he said?

While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way. I made an appointment with a highly recommended neurologist/Movement Disorder Specialist three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions asked. But it was a reminder of what was now gone. My doctor.

It was nearing the end of the appointment when the new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow broke. Surely they don’t have to open my brain again and can just put a little tape around it? Some super glue?

No luck. That fix-it surgery i ended up going back in for was harder on me than the first two surgeries. However, it affirmed and reassured me of the fact that God is in control and knows what’s best and that – I am stubborn.

I tend to hold on for far too long to that which God is trying to pry loose from the clutches of my fingers. I sometimes feel like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, and what’s it going to look like?

I heard it again…

I will.

I sat in the doctor’s office and waited for confirmation that the DBS unit in right, working order. She made adjustments that day, the following week, the week after that and two days after that, she adjusted it yet again.

I now have a competent neurologist just ten minutes away and next week I will be there for my next appointment. Not because the regular ‘check ups’ are actually doable, but because I have learned this year – again – that God is in control and has His best for me in mind, despite my stubbornness. And, it is when I let go that He is free to work.

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair, but I do know who’s going to be there with me through it all.

He will.

Taking Care of You

imageI attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.

One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.

A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.

If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.

How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you seek out a doctor’s care? A support group? Because you matter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.

Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another. If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice. If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit. Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk. Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Talk to someone. Let them remind you of the truth – you  matter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”

Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you. And don’t forget to take your meds.

“If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”
Chad Sugg, Monsters Under Your Head