Bringing Awareness to Something You’d Just as Soon Forget

Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above.

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri

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.