I might be asking for trouble for writing this, but here goes…
I have always been a good little patient. I have listened to what my doctors say and done everything by the book, so to speak. But as I get older with this little monster as my constant companion and admittedly becoming more forgetful when it comes to my medications (and other stuff), I am also becoming stronger in myself. I am finding that in order to survive, I am having to be tougher. Stronger. More sure of myself. Who I am. And that means if I take less pills than the doctor prescribes and am still alive, then so be it.
Within 3-4 years of being diagnosed with Parkinson’s disease, I remember taking up to 26+ pills a day, either prescribed and over the counter stuff that would aid in my symptoms due to PD. I took them all. I had complete faith in my neurologist that he knew what was best for me. But, even though I feel it is blasphemy to say this, I’m going to say it/ask it. Did he know best? Does anyone?
I’ve had DBS (Deep Brain Stimulation) and perhaps it is because of this wonder surgery my PD can appear to be ‘invisible‘ . I assure you, for so many reasons, visible or invisible, my fight with PD is real and ongoing.
But, I am taking less and less in the pharmaceutical area of the disease. This past year I began to get sick after taking pills I have taken for a decade. Morning, noon, and night. So I decided to take matters into my own hands and find out which one was the culprit in making me not want to face another day of being sick. I had many to choose from.
After bringing up the subject with my new neurologist, we decided to go with the Amanadine, then the next visit we went with the Azilect, then the Aricept. Then the sickness stopped. When beginning this regimen, I was on doses of pills of many different colors that added up to approximately 16 pills a day. Every three months prior to July, my current nuerologist would make adjustments to my DBS unit so as not to have to up the medications more.
After attending the World Parkinson’s Congress in September, I keep coming back to a comment a doctor made to a woman with Parkinson’s disease who asked, “How do you feel about patients taking the reins on their own care and adjusting their treatment program as they see fit?” The doctor, an MDS (Movement Disorder Specialist), replied, “I don’t have a problem with it as long as you tell me about it after you’ve done it.”
Of course, a patient is limited to what they can do in regards to medications but I am finding fewer pills are working well for now. My doctor is aware of all the medication I am taking and the changes. I wouldn’t do it without his approval. The one thing I do notice – my wearing off is greater. It is not as gradual and if I don’t stay current, I shut down quickly. That is somewhat scary to me.
For now, I am grateful less chemicals are filling up my flesh, because I know, for now, it’s only temporary.
I am one of those people who could easily, depending on the size (of course), wear the shirt that says, “I’m correcting your grammar in my head as you speak.” For as often and as many mistakes as I make in typing, whether it be grammatical or in the area of spelling or punctuation, it still bothers me to see spelling errors in something typed professionally that I know was edited by someone. Or punctuation done improperly. Or ill-grammar usage. Even though it is a pet peeve of mine, I make just as many blunders and they slip by unnoticed. I don’t get frustrated with the writer (myself excluded), just over the mistakes. Maybe it’s part of having OCD (obsessive compulsive days).
Unfortunately, it happens now, more than ever. Take today for example…
I filled out a form today that asked my name, my email, and to check a little box. That’s it. So, I filled out my name, my email, and left the little box unchecked.
37 seconds is what it took to fill out my name, my email, and the ignore that little box.
I used to type at 72 wpm. When I first started having tremors it began to decrease to 65, then 60, and who knows what it is now – probably 10-ish or even less. And it frustrates me because one of the greatest joys in my life is writing.
Writing articles, children’s stories, devotions, inspirational stories, and so much more. But it can be sooooo frustrating because the going can be sooooo slow and full of errors and mistakes and going back and fixing and fixing and fixing. Whatever the reason, I keep doing it because I love it and believe that for some reason that I don’t understand, God wants me to keep doing it. Perhaps it’s because often it is therapy for when I am weary. Perhaps it’s encouragement for others. Perhaps it’s something else.
I don’t struggle with tremors as much after having surgery for DBS (Deep Brain Stimulation), but I do struggle with making my fingers work the way I want them to. They seem to have a mind of their own. Yes, I want to throw the computer out the window sometimes. Writing by hand isn’t an option. No one would be able to read it by the second line.
But… I keep on. I have to keep on. I don’t have an option. Writing is a lifeline. It is a joy. It is a gift God gave to me and since He hasn’t asked for it back, I will keep using it as long as I have breath. Until then, anyone know of a really good program for those who are ‘writing-impaired’? I’m trying to better my typing speed.
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.