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.”
Several years ago, I attended a women’s conference and one of the speakers spoke on how sometimes we make plans for our life, only to have them over turned by the curves and bumps on the road we are traveling – or planned to travel. Kind of like planning to take a trip to Holland and unexpectantly ending up in Italy.
This is my version of that story…
Welcome to Parkinson’s Disease
Life is much like planning for a fabulous trip. A once-in-a-lifetime-around-the-world excursion.
Life and its expectations. You plan for them – college, marriage, babies, moving, retirement. It’s all can be like planning for that fabulous get away to somewhere like say… Italy.
You buy a bunch of guidebooks. You do your Google research for the best places to stay, sights for you to see, airfare specials for you to book, and more. You make your wonderful plans. You will go to the coliseum. See Micheangelo’s David. RIde the gondolas in Venice. And perhaps you will educate yourself by learning some handy and witty phrases in Italian. Meanwhile, feeling unusually tired lately, you hope the trip will rejuvenate you and you will have energy to see and do it all.
You cannot wait for all the planning to come together as you excitedly count the days until your departure. All the weeks, months, and maybe even years of anticipation and hours of preparation lead up to that moment. The day you leave. Your bags are packed with everything you will need and it’s a no brainer that everything is going to be perfect as you spend the next three months abroad.
After all, you planned for this.
Tripping as you step onto the plane, you then find your seat and settle in, all the while hoping that no one saw you almost fall. Now shaking (something you’ve noticed you do even when you’re not nervous), you close your eyes but find it difficult to sleep, chalking it up excitement. Several hours later, the plane lands and you can hardly wait to breathe in the wonderful, warm air of Italy. The flight attendant comes on over the loud speaker and tells you that you may now take off your seat belt and in a warm and friendly voice adds, “Welcome to Parkinson’s disease!”
“Parkinson’s disease?!” you say. “What do you mean, Parkinson’s disease? I signed up for a vacation in Italy. I planned for a vacation in Italy. I’ve spent the last ten years thinking about my vacation in Italy! Dang-nabbit!!! I’M SUPPPOSED TO BE VACATIONING IN ITALY!!!”
Now, the important thing to remember is that you haven’t been taken to a horrible, disgusting, filthy place, full of pestilence, famine and the like. You have just been re-directed to a different place in life.
So, now you must go out and buy new guidebooks on this new season in life called Parkinson’s disease. And, you must learn a whole new language. Words like basal ganglia and dopamine and dystonia and so on. So much more. And you will be meeting a whole new group of people that you never would have met if you had gone to Italy. Other people who have been on a journey with Parkinson’s. Patients. Caregivers. Movement disorder specialists, to name a few.
This is not what you had envisioned. Not what you had dreamed of or imagined. It’s a different place. A place where disease is present. A place where now all other things in your life have been, could or will be affected. It may now be a place where your marriage changes. Retirement may come sooner. Your kids may have a hard time understanding. This life you are now living with Parkinson’s disease may have thrown you for a loop. It certainly isn’t what you had hoped for. This life you are now living is slower paced than that trip you had planned to Italy and it is certainly filled with many unknowns, but after you have caught your breath and looked around, you begin to notice that Parkinson’s has something, in a round about way, something to offer…
You notice that Parkinson’s disease affords the opportunities to see things differently. It offers the ability to deepen your level of compassion and understanding. Parkinson’s disease allows you to meet many new and different people you would never have met if you had gone to Italy. It gives rise to a deeper faith, thereby strengthening your relationship with your Creator.
And yet, everyone you know is busy coming to and from Italy – that place that you had always dreamed of going to and maybe even spending the rest of your life there. They all seem to be bragging about the wonderful life they’re living there, or at least the wonderful time they’re having as they visit. And for the rest of your life you will think to yourself, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that loss – that dream – may never, ever go away because that loss is a very, very significant loss. But, if you spend the rest of your life (or even a part of it), mourning the fact that life isn’t exactly the way you had planned – that you didn’t get to go to Italy and you ended up on a journey with Parkinson’s disease instead – than you may never be free to enjoy the very special blessings that this life has to offer. So…
Welcome to Parkinson’s disease.
It’s not what I had planned either but here I am. I would much rather have been able to stay on course and made my way to Italy and writing you from atop the Eiffel Tower, but alas, my Pilot had other plans. So – having come here before you or perhaps feeling a bit better than you are feeling today on your journey, I am here to walk with you, beside you, and together under that guide of our trustworthy Pilot, we will forge through this unplanned and unimagined journey and when we get to the end of this road, may it be said of us… “Well done, good and faithful travelers.”
Last summer, the findings of a study conducted by the University of Houston were released regarding the well being of female breast cancer survivors, specifically Chinese women. This ethnic group was chosen primarily because of the stigma cancer holds within the Chinese community.
“Unlike the Caucasian population, many Chinese have less knowledge of breast cancer and they feel that the cancer is very threatening, and they associate it with immediate death,” said Qian Lu, assistant professor and director of the Culture and Health Research Center at the University of Houston.
The study, which was published in Health Psychology, a scholarly journal, was based upon writing. Each of the 19 participants in the study (based in the Los Angeles area) were given health assessment questionnaires before the study began, followed by three sets of instructions. In week one, patients wrote about their deepest thoughts/fears/emotions in regards to their experience with breast cancer.
Week two, they wrote about coping mechanisms they used to relieve stress brought on by the disease, and in week three they were to write about their positive thoughts and feelings. The patients who put in 20 to 30 minutes each day regularly (3-4 days per week) for the three week period saw positive change in relationship to their immune system.
The report stated that the purpose of the writing exercise was “to facilitate emotional disclosure, effective coping and finding benefit, which would work together to bring stressors and personal goals into awareness and regulate thoughts and emotions relevant to the cancer experience.” It also went on to say that the “release offered by writing had a direct impact on the body’s capacity to withstand stress and fight off infection and disease.”
So – what’s this have to do with Parkinson’s disease?
I don’t think Chinese women have an edge when it comes to writing about their illness, disease, sickness, heartache, joy and/or thanks-givings. No – I believe that writing is good for anyone’s mind, soul, heart, and spirit. You can scratch down (or type out) your thoughts and feelings and say whatever you choose in regards to how you’re feeling. It’s a release of pent up frustrations, anger, fear, confused thoughts, sorrow, grief – the list could go on and on. It’s a release when no one else will listen or when no one may understand. It’s called journaling. It’s therapy in its least expensive form (besides the one on one sharing of conversation between two good friends).
Journaling (or as the study referred to – writing) will not cure cancer. It will not cure Parkinson’s. But it will allow for a place to dump the stress and walk away, perhaps leading to a feeling of life being a bit lighter. When you’re body isn’t focused on fear, grief, sorrow and the like, it has a greater capacity to “withstand stress and fight off infection and disease,” as Lu stated above. Journaling offers the opportunity to get out your fears without feeling foolish. To release the grief over feeling you’ve lost something valuable. To be thankful for what you do have.
And that last sentence is important…
If you spend your time journaling everything negative about your life with PD, your life with PD will be anything but positive. There are still good and beautiful things to behold in the midst of this journey. So, if you are thinking about journaling your life with Parkinson’s disease, either as a patient or a care giver – release the fears, the unshed tears, the grief and the sorrow onto paper but make sure you include and end with the positive. Always end with something positive.