Serotonin, 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 under-active in people with Parkinson’s disease. 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-control” department, the first mentioned in the above paragraph. The second is – sometimes we can wear what is referred to as a ‘masked face’. This is not an optional ‘mask’ they wear, as if going to a masquerade ball, nor is it necessarily due to the possibility of depression being present. No, having a masked face is just 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. How that assumption saddens and depresses me, because that assumption is not true.
We all have another part of our brain called the frontal lobe. It is a very important place in the brain that helps to control moods. The problem here is that for PD patients, it is known to be under-active, which accounts for 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 actually was wrong. Maybe there was something I’m supposed to be sad or depressed over and I just haven’t found out about it 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. Especially if it happens repeatedly.
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? Maybe I should cry. How long should I cry? Alas, after a thorough examination of my brain, I concluded that yes, I was fine and I wasn’t going to cry. 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 and there isn’t a lighter side for them.
Dr. Anthony Santiago, the world’s greatest Movement Disorder Specialist (at least in Minnesota), once told me that in some PD cases, depression is the patient’s first symptom (surprise!) of having 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. An additional reason as to why a PD patient may experience depression is that the patient is day in day out staring an ugly, chronic illness in the face. That in itself is enough to cause depression for many.
So, what to do?
Make sure you are being optimally treated for PD. If you’re not receiving the correct medications regarding sleepless nights, if you’re struggling with constipation, experiencing fatigue, freezing episodes and more, these can contribute to depression and need to be addressed. That is why you need to discuss anything (that you think may be irrelevant to you or not) with your physician to get the best care. What we think is not 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 begin to or increase my exercise, I tend to make better choices when it comes to food. I look at it like – I just walked a while and I’m not eating that yummy cold Chocolate Chip Mint ice cream and cancel out what I just accomplished. (I’ll save it and eat it the next day. Hopefully by then, someone else will have found it and I won’t half to be tempted, but hopefully not.)
It’s a proven fact that if we get up and get going we’ll feel better mentally. 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 often focuses 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. It is an emotional battlefield.
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. The doctor finally told his depressed 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. By taking his eyes off himself and putting them on another and getting involved helping other, the once depressed patient realized there were others worse off than himself.
There are many cases of depression that don’t fit neatly or easily into that theory of treatment, some due to chemical imbalances or injuries that are difficult to treat, even with the medications that are available. 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 (or singing).
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 amount that you are willing to confide in him with what you are experiencing.
You cannot find your keys. It could happen to anyone. Happens to me often. It happens to someone else I know all the time (but I’m not naming names).
You forget where you parked your car. Happens to me if I’m along for the ride. Or the driver.
Life is stressful, harried, and most of the time we have a lot on our minds and just aren’t paying attention. A common occurrence. No big deal.
It’s January and you are sitting at the kitchen table and staring out the window as the snow falls gently on the ground and try as hard as you might, you cannot remember what season it is. ‘Spring?’ you think. ‘Does it snow in the spring? For heaven’s sake girl, it doesn’t snow in the spring. Fall then – it must be fall. It’s cold in the fall. That’s it.’
That’s a sign to take seriously that you or a loved one may be experiencing the early onset of Alzheimers. The inability to recognize or track dates or seasons is one of the first symptoms of early onset Alzheimer’s disease, which occurs in 5 to 10% of people under the age of 65. It is not uncommon to see people in their 50’s with signs of early onset Alzheimer’s (EOA), but like Parkinson’s disease – not impossible.
A lack of motivation or sticking to a task can be mistaken at work as laziness when, in fact, EOA could very well be the culprit. Instead of being properly diagnosed as an EOA patient, the individual suffering with symptoms in which they have no control over may result in being dismissed from a good job, associated with mental problems, or other consequences and/or misjudgments. Relationships (especially the loss of intimacy) may also begin to deteriorate when one or both parties do not understand the connection to something greater at fault.
While losing your keys once in a while or forgetting where you parked your car can be absolutely normal, misplacing things consistently and not being able to retrace your steps to find them could be a sign of EOA. Making a bad decision from time to time, missing a payment once a year on utilities, and forgetting a word to describe what you are trying to say – all normal. However, continually having poor decision making abilities, having a hard time holding or having a conversation, or the inability to manage your budget – these are big players in early onset Alzheimer’s and need to not only be taken seriously, but action should be taken for a diagnosis as to why these symptoms are occurring. Alzheimer’s does not happen overnight, regardless of age. It takes different degrees of progression, depending on each individual. A person of any age will experience a few to several symptoms. Common symptoms are:
forgetting information learned recently
asking to repeat information over and over again
inability to remember without help (notes, family members intervention, etc)
trouble following familiar recipes
lack of or difficulty in concentration
difficulty doing familiar tasks (heating in a microwave, TV controls, etc)
taking a walk and losing your way
visual images are confusing (difficulty in reading and judging distance)
difficulty speaking or being part of a conversation due to forgetfulness when trying to form words
misplacing items and inability to retrace steps (not uncommon to accuse others of stealing)
judgment decreases in regards to handling money
personal hygiene may suffer
removal of one’s self from normal activities; becomes more introverted
mood and personality changes may occur (suspicious, depressed, etc)
It is important to remember that a person may be experiencing some of these symptoms and not have any connection to having EOA. A proper diagnosis needs to be made by a knowledgeable physician. It is also important to remember that if diagnosed with early onset Alzheimer’s disease, a person may only experience a few of the symptoms listed above while another, several. Just like Parkinson’s disease and most every other disease, each person is unique and the disease is unique to each person, although similar in many ways. The best advice when determining whether you or someone you love may be experiencing EOA is to see a physician.
A neurological movement disorder that deals with sustained muscle contractions, causing twisting and repetitive movements or abnormal postures and can be a part of having Parkinson’s disease.
Symptoms of dystonia can include disturbed sleep patterns, tiredness, depression, poor concentration, change in vision, and more. Normal activities can be more difficult to carry out. Dystonia mimics other diseases as well, making it extremely important to not self-diagnose. Neurologists and Movement Disorder Specialists are physicians specializing in various areas such as dystonia and Parkinson’s Disease, with the ability to clearly differentiate (although sometimes difficult in doing so, depending on how the disease manifests its symptoms) the similarities of diseases with commonalities such as these.
As well as the experiencing the symptoms listed above, dystonia tends to lend itself to continuous pain, cramping and muscle spasms. Because of the areas that can be affected, penmanship may become altered, dropping items becomes common, turning pages becomes a struggle. The list can go on.
Focal dystonias are the most common types of dystonia are known as focal dystonias. Another – Cervical dystonia – affects the neck muscles, whereas blepharospasm dystonia is known to affect the muscles around the eyes. When the jaw and tongue muscles are affected, it is known as oromandibular dystonia. The voice can be affected, causing a ‘crackling’ sound and is known as spasmodic dysphonia. When a patient suffers from both blepharospasmodic contractions and oromandibular dystonia, it is referred to as cranial dystonia, also known as Meige’s syndrome.
While some cases can worsen over time, some can almost be mild in their degree of symptoms and their affects on the body. Many drug treatments have been successful in managing symptoms, but recent treatments using botox have proven extremely successful for 3-6 months when injected into the affected areas. Many PD treatments, including deep brain stimulation, are used for treating dystonia and are quite promising in helping the patient to cope with the disease.
What may seem like an odd treatment may actually be one of the best received and most helpful… a big hug. It has been proven that when encased in a tight ‘bear hug’ the tension and tightening of the contracted muscles are often released when squeezed tightly.
There aren’t many diseases (if any, that I am aware of!) that respond to such a simple, welcomed treatment. So – the next time you’re struggling with stiffness, spasms, and pain associated with having Parkinson’s disease and/or dystonia, ask a loved one to give you a tight bear hug and hold you for a few minutes. You’ll not only feel better physically but in every other way as well and so will they. There is healing in a hug – for everyone involved.
Awhile a back, the song “God Is Good” filled the airwaves of Christian radio stations across the country.
God is good, all the time. Through the darkest night His light will shine.
If you’re walking through the valley and there are shadows all around, Do not fear, for He will guide you – He will keep you safe and sound.
He has promised to never leave you, Nor forsake you, and His Word is true.
The song was popular and became a regular Sunday morning praise song in church gathering nationwide. Why? It restored hope to those hopeless from being overshadowed by the past week’s of no income, no job, a wayward child, a divorce, unwanted news of a disease.
It restored focus to those who walked into church confused and lost, reminding them they don’t walk this path alone. It restored hope to those who felt they wouldn’t make it another day – physically, mentally, spiritually, and/or emotionally, by reassuring them they are in the care of the Almighty.
Sometimes we are the ones walking in the valleys of darkness. We seem to stumble and fall with every unstable step. We feel lost, alone, frightened, desperate. (Where’s that Lexapro?…) That is said in jest, but you know the feeling. We fear the unknown. We feel the shadows will consume us or – they are consuming us.
God is good.
All the time.
This isn’t His fault – this mess of a world we live in. His desire was to provide goodness. We blew it when that red, juicy apple was dangled in front of our face and we looked to the left and then we looked to the right and then we convinced ourselves God wasn’t watching and He wouldn’t know if we just took one little nibble. We took that bite and the whole world, as God intended it to be, took a 180 degree turn.
It wasn’t His fault that a refugee camp in South Sudan was bombed by the very ones these refugees are desperately trying to flee…
“A few days ago I visited a refugee camp in South Sudan, where Samaritan’s Purse is helping care for some 23,000 refugees who have fled the atrocities of the government of Sudan. The camp has been a safe haven for these suffering people. But Thursday, the violence followed them when the camp was bombed by the very government they have been fleeing.
“Four bombs were dropped. Praise God, we have confirmed that all of our staff are safe and accounted for, and as of now there are no reports of people injured on the ground.
“These people are in need of immediate prayer. Please pray for safety for the refugees, and for our staff. Pray for peace to come to this troubled region. Most of all, please pray that the people we are helping will find lasting hope in Jesus Christ.” ~Franklin Gharam, President of Samaritam’s Purse.
It wasn’t His fault that a wife will no longer be able to tell her husband goodnight…
“…The night before the burial of her husband, 2nd Lt. James Cathey of the United States Marine Corps, killed in Iraq, Katherine Cathey refused to leave the casket, asking to sleep next to his body for the last time. The Marines made a bed for her, tucking in the sheets below the flag. Before she fell asleep, she opened her laptop computer and played songs that reminded her of “Cat”, andoneof the Marinesaskedifshe wanted themtocontinuestandingwatchassheslept.
“I think it would be kind of nice if you kept doing it” she said. “I think that’s what he would have wanted”.
Dipesh Gohil, who shared this story says, “Not sure what is more honorable: being married to this faithful wife to the end or the Marine standing next to the casket watching over them both.”
It is not God’s fault that I have Parkinson’s disease.
The world was a pretty nice place until that red, juicy apple looked better than the world we lived in at the very onset of time. And at that point – the point at which we inserted our white teeth into the juicy, raw flesh of sin – we became people with our own agenda. People with a free will that demonstrated – if we wanted things our way, we were going to have things our way. And God let it be so. And we called it ‘free will’. But we didn’t realize the price tag of that free will.
God is not mean. It is not His character that we should squirm or suffer. He just says, “I will not force you to love Me. It is a choice. However, you ate of that nice red, juicy apple (sin) that I told you must leave on the tree and there are consequences to disobedience.”
Unfortunately, while we may not be the one doing the disobeying, we can become a part of other people’s circles of poor life choices, ultimately being affected by their consequences.
Like James and Katherine Cathey. Like the bombings in the refugee camps in South Sudan. Like having a chronic illness. God did not will it.
“But,” you say, “He allowed it.”
Yes. I believe – for two reasons.
First, there was that nice, big, red, juicy apple. It was enticing. Alluring. An exciting possibility to become as knowledgeable as God. It was attractive, irresistable – tempting. And we took the bait. From that moment on, life as it was created to be, forever changed. With the presence of sin, now death entered into the story. Where there was once purity, there was now shame. Where once there was freedom, we now felt bondage. Where there was once light, there was now darkness. Where there was once fullness, now there was hunger. Where there was once good health, sickness now entered into the picture.
But God remained. And He remained aithful and true. He never changed. He now waited to see what we would choose. Him or this world. We would not be forced to love Him. We had a choice – free will.
Second, He may not cause certain things to happen but yes, He has the power to stop it or He allows it to be. But, ask yourself – If God stopped every struggle, every pain, every heartache, every inconvience, every pimple – where would we be? Blemish free perhaps, but ignorant, childish, selfish, while still in a world full of sin. There would be no experience, no wisdom, no maturity, no mental, emotional, or spiritual growth. We would remain as infants.
Selfishness would abound and become the norm. Pride, self, and ego would rule (more than it does now). Chaos would erupt. Constantly. Daily. Everywhere. Kind of sounds like the consequences of our choices as a people are catching up with us quickly.
Without the dark times, we cannot appreciate the light. Without pain and sorrow, we cannot appreciate joy and happiness. Without the storms, we could never imagine just how good the sunshine can be.
I have Parkinson’s disease. My husband is still unemployed. My daughter lives too far away. Relationships in my life are facing life-changing situations, some by their own merit, others by no choice of their own.
God is good.
All the time.
I met Sara several years ago, and when meeting her, felt as if I had known her forever. There’s an unspoken bond between people with chronic illness and pain.
Sara was diagnosed with Ankylosing Spondylitis. A disease much like arthiritis, but in some ways, nothing like arthritis. It is progressive and debilitating. It does not favor. It can be ruthless. There is no cure. Sound familiar?
I am going to leave you with portions of her story.
If you are struggling, I believe you will be encouraged. Hopefully you will see God’s goodness between the lines, amidst the struggle of her disease. And, hopefully, you will find hope, because God is good. All the time.
“When I stopped dreaming I could run, I knew for sure my life had changed permanently. The disease I have is called Ankylosing Spondylitis and it’s different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties and begins by attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine.
“The “goal” of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together. Until recently, most doctors believed that AS was a man’s disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.
“For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won’t go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, “Oh, that silly little girl is overreacting.” I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like “The boyfriend is fine but I’m finding you very stressful.” But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, “No. I’m not sad, I’m in pain.” And sadly, that doesn’t always get you very far.
“Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn’t know went together, turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with arthritis. Ahh, the good old days.
“Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected… and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I’m sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.
“My life now, to put it bluntly, is painful. If I’m having a good day it means my pain is moderately high at best, and I’ve showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen’s for short little errands, but it’s been a long time since that was an easy trip. I don’t count on that I will be able to do that again… it’s not in my reality right now.
“And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can’t imagine I ever ran track or jumped over a hurdle without it being painful. I don’t remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don’t long as much for something I can’t imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.
“Other than the crutches and the wincing in pain thing, when I’m not on steroids I look pretty average and healthy. And I don’t want to look otherwise. I will write about this as part of my life, but I’m not going to lament endlessly on this blog about my daily struggles and pains and complications. It’s hard for people to understand that just because I’m not complaining, it doesn’t mean I’m getting better. It’s just that when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. I’m more than a sick person. I’m a person who is sick… and as I often tell my mother, my body is brutal but I’m ok.
“My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I’ve talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it’s the life I’ve been blessed with and I won’t take a moment of it for granted. And if you’re taking a moment to read this blog, I’m not taking that for granted either. Thanks.”