Hello, I hope you enjoy my blog about my Eassential Tremors. I was diagnosed a few years ago and have seen my tremors getting worse and making my daily life difficult. I live in North Carolina with my daughter and one fussy, little dog!
Everyday and everywhere I go lately, the subject of CBD oil is on everyone’s mind. Can it heal arthritis? Is it an alternative to anti-depressants? Is it the new miracle drug? Is it a drug?
Suffering with many maladies in addition to my tremors, I have watched the news carefully since my state made use of CBD oil legal. I have read reports in magazines and listened as many news stories discussed the possible benefits and uses of CBD oil. I wanted to know if this product of the marijuana plant had qualities that could, if not heal my body, at least give me some relief.
I wasn’t sure. So many conflicting comments make one wonder if it’s all hype of aging hippies, or if there is truth flying in the face of long held beliefs.
On another trip to the pharmacist for another refill of pills promising relief, my daughter noticed a huge flyer posted at the entrance of our local pharmacy. “We now have CBD Oil!”
I decided to give it a try. All the prescriptions from my doctor had done nothing for my tremors. I still shook like an old car and my arthritic knees were bringing me to tears. After consulting with the pharmacist, we learned their CBD oil was generated from a small, local farm under strict guidelines and totally organic. It took awhile, but I must say I have seen some improvement, not a cure, but an improvement. I have used it on my crippled knee caps and found the pain reduced. Others have reported similar results in spite of doctors claims that CBD oil has no research to back up such claims. Hmm…I wonder…
As conservative as my home state is, I applaud our current governor for his forward thinking approach to the uses and benefits of medical marijuana and CBD oil. I can understand the hesitant nature of elected officials when it comes to use of marijuana for medical purposes as too many people have been prescribed the plant for everything from controlling seizures to hangnails. But since CBD oil does not contain the psycho-reactive qualities of marijuana, I mistakenly believed it would be legal to use everywhere. No one is going to high on CBD oil.
That was until I heard a blurb from my local news station. “A grandmother is arrested on charges of possession of CBD oil.” I asked my daughter if I had heard right. She nodded and turned up the volume on the TV.
We watched in disbelief as the video showed a woman being taken into custody, handcuffed and placed into a police vehicle for CBD oil. And at all places…Disney World
I later learned that CBD oil is illegal in the state of Florida, however, CBD oil is sold in stores everywhere in the state. I am so confused. You can buy it but you can’t be in possession of the oil? I think Florida lawmakers need to talk seriously about their ideas about CDB.
That’s just my opinion. For right now, I have no plans on visiting Mickey Mouse.
Modern medicine is a miracle. What seemed impossible just a few years ago, has changed dramatically thanks to technology. For anyone suffering from a chronic condition, new medicines and new procedures promising relief are a gift from heaven.
But this isn’t heaven. We are bound in these earthly bodies as long as we walk upon this earth, and as promising as technology is, there will always be consequences and dealing with the after effects of medicine or procedures designed to eliminate suffering, or at least, lessen the problem to a degree that makes daily life easier.
For years, the only relief from the daily struggles of ET came in the form of drugs or DBS (Deep Brain Stimulation), where a surgeon implants a tiny device into the area causing the tremor. The device is connected to a small battery that is surgically placed under the skin along the neckline, much in the same way a pacemaker would be implanted. A wire leading from the battery to the area of the brain being treated, sends out electrical currents that disrupt abnormal impulses. My explanation is of course, very crude and I encourage people reading this blog to read the link to learn more in depth about DBS. https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562
DBS is a very invasive surgery, and for that reason alone, many patients have shied away from this procedure. Many people with ET have reported life changing results, and for patients who were disabled due to their tremors, life changing would be an understatement. But it is not without risks, as with all procedures. In dealing with the brain, difficulties can arise. Prolonged tingling, numbing, strokes, and vision disturbances, either temporary or long term, are risk factors that need to be considered. The operation is not pleasant as I have been told. And the fact that the patient is awake during the procedure makes it a frightening prospect for many people.
Along comes Focused Ultrasound.
Focused Ultrasound is the newest innovation in movement disorders. Ultrasound is basically high frequency sound waves that can pass through skin and bone. It allows imaging of areas within the body to be seen at a range not capable with x-ray. Most of us have had an ultrasound at one time or another for pain related issues. An ultrasound is ordered by your doctor so he or she may view what is going on in your body. It is a bit technical, but if you want to learn more about it, check out this website for more information. (https://www.fusfoundation.org/the-technology/overview)
Focused Ultrasound has, and is being used for treatment of various health conditions, and it is realatively safe for most individuals. For patients with Essential Tremor, the ultrasound is targeted at a specific area in the brain cauisng the patients’ tremor and ablates (destroys) the tissue in that area of the brain, the thalamus, in patients with ET. Note, the entire thalamus is not ablated, just the specific area within the thalamus causing the tremor. The energy generated by the ultrasound is administered in increasing amounts until the patient is able to demonstrate lessening of the tremor.
As with Deep Brain Stimulation, the patient is awake during the procedure. However, as this is non-invasive, the focused ultrasound requires no incision and many patients are able to return home after the procedure, though in some cases, your doctor might require the patient to stay the night in a hospital for observation. In most clinical studies, more than 50% of patients with ET, where medication had not improved the patients’ tremor, saw an improvement in their condition.
There are however, risks involved with any medical procedure, and it is important to discuss all possible reactions as well as both short and long-term effects of treatment. Some patients reported tingling/numbness in hands and fingers during or after their procedure using Focused Ultrasound. Headache, dizziness, gait disturbances were also reported. There have also been reports of tissue damage to areas other than the focused treatment area, hemmorrhage resulting in emergency treatment, burns to skin, scar formation, and blood clots. In some studies, the patients’ tremor returned, but these were very few occurences.
There are always pros and cons for any procedure, and it is important to note here that this blog is not a substitute for seeking medical advice; only basic information. Patients should always review with their doctor(s) in regards to their health and well-being. Ask as many questions as you can. Although Focused Ultrasound has been used successfully in the past, in the world of medicine, it is still considered a new procedure and not all possible side effects are known.
For right now, I am continuing my medication and using CBD oil. I cannot reccomend or defend one option over another. Every person is unique and knows their own body better than anyone else. I hope this information helps those considering Focused Ultrasound, and as always, listen to your doctor and your own heart.
If one more person tells me how grateful I should be for all the many blessings I have in my life, I think I might scream.
It all started around the middle of January. I felt run down, but not really sick. My daughter had been recovering from a virus that had kept her in and out of the doctor’s office since Thanksgiving, and I wondered if maybe I had picked up something from her. Then one day, I woke up with both ears hurting and a roaring sound in both that made it nearly impossible for me to hear. Not that my hearing was all that good to begin with, but now I couldn’t make out even the simplest sentences. After a visit with my new family practitioner, I was diagnosed with a raging infection in both ears and prescribed antibiotics until the swelling was down enough to use drops for further relief.
I had been telling my old doctor for some years about my ears hurting, and how my right ear felt like a sharp knife had run right through it. All of which was dismissed. “I don’t see anything,” was all he offered. Nice.
Worried that I might have suffered an eardrum rupture sometime in the past, the new family practitioner referred me to an Ear, Nose & Throat specialist. The physician she wanted me to see was not available and I was seen by a semi-retired doctor who lectured my daughter about how I needed to be seen by an M.D., not a Nurse Practitioner, as they were not real doctors and liked “playing,” doctor. After a quick look in my ears he said if there had been an infection, it was healed as he saw nothing. Sound familiar?
The ENT suggested I get a hearing test by a “real” audiologist as the ones I had been tested by at local hearing aid centers were just out for the money and had no real training. I came back and received the same hearing test I had been given twice before at those “unreal” audiologists. After the results, he said I needed a hearing aid and left me with a number to call, but not before telling me I needed to “get over this depression,” because, “it is a nice day, and the sun is shining, and there are people everywhere in much worse shape.” He then began to ramble on about his church and how much prayer helped him and how I needed to do the same. I left his massive, two-story, detached office building feeling worse than when I arrived.
As my daughter drove us out of the parking lot, she sighed… heavily. She had heard this just as much as I had as she escorts me on my doctor visits. Through my tears, I remarked how all this had been a waste of time and money I didn’t have. “But I should be grateful.” I said sarcastically. “Afterall, there are people in the world worse off than me.”
My daughter shook her head. “I wonder,” she began, “how many times people like that think about how grateful they should be. I mean, do they ever thank God that they can drive themselves anywhere they want to go? Did they feed themselves at breakfast, or did they need someone to assist them? Can they hear the birds singing? Do they ever feel left out in a conversation because they can’t hear what’s being said? I didn’t see him struggling to walk up and down the corridors of that ridiculously, over sized office of his. Does he ever thank God for that? I doubt it.”
I sniffed. “No,” I answered. “I doubt many people do.”
Now, don’t get me wrong here. My daughter is a Christian woman and believes in God’s power of healing, as do I . I was raised in the Old South, Ole’ Time religion. I sat every Sunday next to my mother, God rest her, and relished in my pastor’s voice as he spoke of the kind, and loving God we serve. I was baptized in that tiny, little wooden clap-board house of worship and I do thank God for my many blessings, including my daughter who I call my angel. I have survived an abusive father who commented many times that his family was a like a “millstone around my neck,” and didn’t spare the rod of punishment when he felt like it. I went through horrible pain as I was subjected to treatments for scoliosis as a child that could only be described as horrific.
I was sent away from my mother and family for two years, lying flat on my back in a cast that fashioned from the bottom of my chin to the top of my knees. I listened to my mother cry over her child on the rare visits my father allowed and him yelling at her to stop because he couldn’t just take off from work to bring her to visit everyday. I remember with fondness my mother’s father coming to visit and bring ice cream for me and the other children and how special I felt in those times. I survived that ordeal, and I am grateful. I could walk.
I got married and had three children in spite of the doctors telling me I would probably not walk and certainly would not be able to carry a child in “my condition.” I survived my husband leaving for Vietnam, with me alone to raise two very rambunctious little boys with no help from family or friends. I survived our divorce after my husbands’ breakdown with Post Traumatic Stress Disorder and his diagnosis of bi-polar disorder. I raised my kids on welfare and food stamps when money was tight and family had abandoned us because of the shame of mental illness in the family. I worked part-time in any little job I could with nothing more than a high-school education. I was mean-mouthed, put down and made to feel inferior due to my lack of a degree. I survived anyway, and I am grateful. We had a roof over our head in public housing and food enough to keep our bellies full.
I watched my daughter as she gasped for breath during asthma attacks and school teachers who told me that my daughter’s asthma was “all in her head.” I fought with more school staff about my daughter’s struggles with math and how I thought she needed to be tested for a learning disorder. When I finally got her in special education in seventh grade, I was shocked when she wasn’t achieving. I only found out when she decided to get her GED that all those days in Special Ed. were of her being handed a worksheet and being left alone, except for the days when they showed a National Geographic filmstrip. Somehow, she survived. And she is grateful. She managed to acheive her Associate of Arts degree and is a prolific writer.
I have cried and worried myself sick when my youngest son began throwing up blood as an infant, and needed emergency surgery on his pancreas. I now worry with his diabetes and how he is faring. I have watched my oldest son suffer needlessly in an emergency room for eight hours with pain in his side and the expression on his face as his appendix ruptured while waiting for the doctor to finish his golf game before coming to help my son. I agonized over the next several days by his bedside, looking at my tall, strong son, with tubes running down his nose and his pale complexion as he fought to recover. I still feel like I should have sued. Some things in this world we have trouble forgiving. But, I am grateful! My children lived without permanent disabilities.
When I first noticed the shakiness in my hands, I alerted doctors to it by holding up my hands and showing them. The reaction I got was that I was “making my hands do that.” I suffered on and worked until my health couldn’t take it anymore. My health has declined since retiring nearly fifteen years ago. I have substantial hearing loss, my heart skips beats and I am often out of breath. I have had more steroid injections in my knees for pain than I can count. Many times, I can’t walk from my front door to my mailbox without my knees giving out. But I am grateful for my life and my children and every day God allows. So please, for the sake of my sanity…stop telling me how grateful I should be! I have experienced enough trials in this world to understand how many are my blessings, so give it a rest and at the end of this day…if you didn’t need help getting dressed, feeding yourself, preparing a meal, walking without pain, breathed without struggle, drove yourself wherever you wanted, and have money enough to buy what you want, then stop counting my blessings and start counting your own!
Finding a good doctor is never easy. Finding a doctor you can trust is even harder. And one that takes Medicare…difficult at best. That’s why after twenty years with the same doctor, I wasn’t looking forward to the search for another. But for the sake of my health, I had no choice; my doctor had already decided for me. Go somewhere else.
My doctor and I had been together for a long time. As I said, twenty years. These days, most marriages don’t last that long. He was a young man with a small family. One of his children had just been born when he began treating me. Over the years, he had listened to my complaints as well as stories about family, work, and daily problems. We shared tales about our dogs, and he sympathized with my tears as I lost two dogs during my time with him. I stayed with him when he ventured out in a new practice with another doctor and saw the practice grow from a few established patients to a successful and busy office with more doctors and services provided.
My daughter even came on board and began seeing him for treatment of her depression and asthma. Our doctor often arranged for our appointments to be scheduled back-to-back so as to save us time driving back and forth as my daughter is my caregiver and it made sense for us to been seen together. Our doctor always showed compassion and concern for our well-being. We knew many staff and nurses by name. We saw folks come and go, and technology infiltrate the office. But for the occasional hiccup when our prescriptions didn’t make it through to our pharmacist, we had minimal complaints.
That all changed during the past few years. Staff members we recognized were being replaced with unfamiliar faces at quite a clip. Where once, as established patients, we were worked into the schedule when needed, now we were told nothing was available “till next week sometime.” Our doctor’s nurse, whom we loved, left abruptly, and was replaced by a chatterbox who seemed more comfortable in sweats and raggy, bottomed pants than in fresh, starched uniforms. Her manner was sloppy and we felt she didn’t listen carefully. To make matters worse, those occasional problems with prescriptions not being called in after a considerable amount of days, began to occur more frequently. What was once a minor complaint, was now cause for concern. My complaints to my doctor, who seemed disturbed by this issue, now seemed to fall on deaf ears. I was fed up, but not ready to abandon my doctor whom I trusted for the past twenty years with my health.
The last straw happened over the Christmas holiday when my daughter noticed her medication for her depression was running low. Not wanting to be stuck without her medication during the stress of the holidays, she called our pharmacists’ automated prescription line as she knew no more refills remained of her medication and the doctor would have to call it in. That was on a Sunday night, the week before Christmas week. That Friday, she had heard nothing from the pharmacist. She decided to check if the medication was ready. Not only was it not ready, it had never been called in.
My daughter and I both had appointments for a follow-up two days after the new year began. We thought we should check into the problem.
“Oh, I called that in this morning,” the nurse said.
When my daughter questioned the delay, the nurse quipped, “I wasn’t here for six days, so I couldn’t check if it had been called in or not.”
My daughter asked why someone in the office had not checked the fax machine and give the request to the doctor, the nurse snapped back, “We don’t like to do faxes, we prefer the pharmacy do everything electronically.” My daughter was clearly getting angry at the feeble excuses and so was I. When our doctor came in, we expressed our disappointment. His response? “You know, this has happened before with you two. Maybe you would be happier going somewhere else. We are obviously not meeting your expectations here.”
My heart felt like it had fell into my stomach.
After twenty years of colds, infections, allergies, shots, even a move that placed us an hour away, and all the rest of our daily health concerns shared, I felt like I had been sent out the front door with a boot in my rear end! I cried on the long one hour trip home. “I feel like I have lost a son,” I told my daughter. “He was like family.”
My daughter was shocked too, and hurt. “Twenty years,” she said. “That’s a lot of our lives shared and cried about.”
She was thinking of her bouts with depression and anxiety. Her multiple surgeries for a colon tear that had gone misdiagnosed by other doctors. Her hysterectomy and recovery. The migraines that tormented her. I was thinking of my tremors he had diagnosed and attempted to treat with medications. My many frightened calls to his office when my heart was pounding out of my chest. The recent battles with my blood pressure jumping up and down like a pogo stick. All the times I cried in his exam room from sheer exhaustion and worry. Now, I was gutted, and felt lost and wandering around like a child.
I have shared this experience with others and their shocked expressions tell me all I need to know…we are better off going elsewhere.
When doctors begin defending bad practices over their patients, it’s time to go. I have scanned the internet for signs when it’s time to leave your doctor. Much of the advice reads the same. Poor staff. A doctor who doesn’t listen. Medication mistakes. Longer than usual wait times, ect. I would like to add one more…when your doctor tells you to leave!
There is no doubt our country has excellent doctors and more than qualified specialists with experience others would envy. Insurance pays little, but at least we have something. But when our doctors and staff use pitiful excuses for poor care of patients, we need to smarten them up! Am I wrong in believing patients should come first, not doctors and staff. Whatever happened to “first, do no harm?” If Hippocrates saw our patient care today, he would be appalled.
I have a nurse practitioner now, and concern for my care feels important. Concern for my well-being is shown. It has only been a few weeks, but we will see how it goes. I feel at bit sore from the sting left by my former doctor and it will take time to build trust, something doctors often take for granted when we place our health in their hands. My advice to anyone reading my blog now is simple…listen to your gut. If you feel like you and your doctor are not on the same page, chances are your are not even reading from the same book! Look elsewhere. Your health is number one, not their quotas and goals for the month. You are a human being with concerns and they need to be addressed. Don’t allow yourself to be intimidated. There are plenty of other doctors “in network,” and a few moments to “shop-around,” could be a blessing. The nurse practioner found my ears were swollen, red, inflamed, scarred, and badly infected. Something I had been complaining about with the “old” doctor for years. Something he refered to as not significant. Now, I have been through two rounds of antibiotics, and referral to an ear, nose, and throat doctor. Maybe it was a blessing in disguise.
It can be a very difficult experience to go through; leaving your doctor. The thought of explaining your whole life health history over again with someone new, who may not work out, leaving you to start over again, is exhausting. Remember though, when it comes to your health, you come first! You are not going to hurt anyone’s feelings by leaving, no matter how long you have been with a physician. Our doctor certainly didn’t cry as we walked down the hall from his office, he didn’t even say goodbye.
Thanksgiving and Christmas Day are two of those many food, focused holidays I would rather avoid. And like many suffering from ET, I would give anything to get through one family gathering without worrying over how I will get my food to my mouth without spilling, dropping, or stumbling around like a drunk person.
My family knows about my tremors and they always tell me that it not a problem. “Don’t worry about it,” is what they tell me, but I can’t help but to worry about it. I feel like everyone is watching me and waiting for me to make a fool of myself. I know this is wrong for me to feel this way, but I just can’t help myself.
Being around people I don’t know, or, who don’t see me regularly, makes me feel like I am living under a microscope. When people don’t speak to me, I think to myself, “It’s because I am different. They see me shaking and they know I am not normal.” If they do speak to me, I am forced into a conversation where my nerves are already raw and my ET decides to center in my throat. I can’t get the words out. My mind has the words but my tongue can’t get them out of my mouth. I know I sound like an idiot.
My stomach starts to knot up. My heart pounds. I begin to sweat. I know everyone around me can see how I am falling apart. I just sit there and hope I don’t have to make a run for the nearest bathroom as my stomach keeps churning. Isn’t it bad enough I have to depend on others to fill up my plate for me as if I were an invalid, or a child relying on a parent for assistance? Now, I have to keep myself from an embarrassment I wouldn’t wish on my worst enemy.
According to the National Institute of Neurological Disorders and Stroke, social anxiety is defined as, “a form of anxiety experienced as shyness or fear of public places, performance, public speaking, social situations, interactions with others, and being evaluated or scrutinized by other people. It further states that social anxiety is used to describe anxiety brought on by anticipating embarrassment or shame.
That sounds very much like the feelings people with ET face everyday, and with the pressures of gathering for holiday parties and engagements, the added stress makes socializing nearly impossible for those of us with ET.
The International Essential Tremor Foundation states in their website article, “ET, Depression & Anxiety,” that most physicians would prescribe an SSRI (Selective Serotonin Reuptake Inhibitor), in treating someone with social anxiety. These medications are more commonly known as antidepressants with names such as Zoloft, Paxil, and Prozac, but these medications can often make tremors worse, so it is important your doctor understands ET, and how treating one problem could impact your tremors. (www.essentialtremor.org). They suggest coping strategies such as deep breathing techniques, and meditation for dealing with social anxiety and depression.
In my blog, http://www.ninasessentialtremors.blog, I have talked a little about how ET has affected my daily life and the anxiety it causes. And after doing a bit of reading online from very reputable research, I have discovered that social anxiety is very common among people with ET, but there are ways to cope.
However, it is important to know that if you are experiencing feelings of suicide or hurting others, please contact your local emergency services immediately!
Deep breathing and meditation can help many people, but for me personally, I need more practical and applicable coping techniques. Here are some helpful hints you might find can be of benefit during the holidays.
Avoid caffeine and nicotine as they can worsen tremors.
If you don’t mind alcohol, try drinking a glass before your engagement. Alcohol tends to lessen tremors, but do designate a driver. Remember also, too much alcohol can cause coordination problems. You don’t want to make your problems worse by indulging too much.
Use travel cups or tumblers with lids that open and close. They are perfect for keeping spillage to a minimum. Many are available in festive colors and designs. They need not be boring!
Use the larger spoons and forks offered in those sets of utensils. The weight will help keep your hands steadier.
Ask your host or hostess if your meat can be cut into smaller portions. This will make your meal easier to manage.
If you are at a party buffet, go for those finger foods!
Try resting your head in the palm of your hand for steadiness or turning your head slightly to one side can help as well.
If you need to carry a glass, try holding the glass by clasping your fingers around the top rim of the glass. This technique will offer more control. It is also a good idea to fill your glass only halfway. If you begin shaking, there is less chance of the beverage spilling out of your glass.
Don’t be afraid to tell someone you have tremors and could they offer assistance. It is better to swallow your pride and ask for help than to try on your own and feel embarrassed later if an accident occurs. I have found more people are willing to help if you just ask.
Laugh at yourself! If something spills, if you can’t get your words out of your mouth, smile and tell them your tremor just kicked in and you would like to kick it right back! The world is not going to come to an end because you are dealing with a disorder you can’t control.
Most important of all…relax. Take time for yourself. If you need a quick escape to gather yourself, ask for a bathroom. You can take a couple of minutes to “not be on” for everyone. Maybe your host or hostess has a separate room you could slip away to for a moment of quiet.
I hope these hints and tips help you this holiday season. I will be at home this year and may be playing hostess myself. I let everyone know about my tremors, and keep my visiting children and grandchildren busy waiting on me for a change. I like to remind them of all they times I waited on them…now it’s my turn to be pampered. Try it for yourself, and Happy Holidays!
It is very easy for me to see a somewhat normal day get turned upside down. Usually this occurs when I venture outside my own world into the unknown of strangers and daily activities. It doesn’t take long before my tremors wreak havoc on my life, even when I pray in earnest to just get through another experience with whoever is in my path. For the most part, people are kind and don’t seem to be put out by my shaky hands as I fumble in my purse for change, or my debit card, but there are times I feel like screaming at someone, “I have tremors; deal with it!”
So, just what is an Essential Tremor?
According to the International Essential Tremor Foundation (IETF), Essential Tremor is defined as “a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk.” (www.essentialtremor.org). Some people feel an internal shake as well. Obviously, this makes daily tasks such as eating from a utensil or drinking from a cup, extremely difficult and sometimes impossible. For many people, walking and driving are no longer possible.
Many people confuse ET as Parkinson’s disease, however, they are two different conditions. IETF states ET is more common as it affects an estimated 10 million people in the U.S. alone. These facts make the world a little less intimidating, but the lack of information among the general public, even primary care doctors, frustrating.
Many people associate shakiness in a person’s body with Parkinson’s disease, and the two are easily confused. It takes a medical professional to correctly diagnose if a patient is afflicted with either Essential Tremor or Parkinson’s disease. Many general practitioners will refer a patient with signs of either disorder to a neurologist for a proper diagnosis.
The average age for people to develop ET is between 40-55 years of age, but anyone of any age can be affected with this disorder.
Information from the Mayo Clinic’s website, http://www.mayoclinic.org, in relation to Essential Tremor, states that most often, patients with ET will experience trembling of hands when the hands are in use, whereas a patient with Parkinson’s will present trembling of hands when the hands are at rest. Also, Essential tremor doesn’t cause other health problems. Persons with Parkinsons’ will present a stooped posture, slow movement, and a shuffled gait. However, some people with ET will develop signs of an unsteady gait, otherwise known as ataxia.
ET and Parkinson’s also tend to affect different parts of the body. ET mainly presents in a person’s hands, head, and voice. People with Parkinsons’ often begin in the hands and affect the person’s legs, chin, and other parts of their body. (www.mayoclinic.org)
I have been on the most commonly prescribed medications for treating ET, those being Propranolol and Primidone, without success. Many in my online support group have experienced the same treatment with varying results, mostly as being not effective. But with statistics from the International Essential tremor Foundation stating that less than 60% of people with ET are not helped with meds, it is comforting to know I am not alone. Still, I am frustrated by the lack of options for people with this life altering disorder.
ET makes everyday a struggle. Things like writing a check or being able to take a drink of water, is enough to put me over the edge. I don’t enjoy visiting like I used to for fear I will stumble into something, knock something over or spill a glass of refreshment offered to me. I feel guilty every time I have to ask my daughter to sign my name at a checkout counter, or carry a tray for me. Going out to eat is an ordeal in itself. I feel as if everyone is staring at me. I worry about spilling my drink, or getting the fork to my mouth. It never ends. Is it any wonder people dealing with ET have high rates of depression? Crying over little details is a constant.
So ET isn’t curable and there are no medications available for treating the disorder that show any real success. Where do I go from here?
First, I try to laugh. It won’t cure me but it will definitely not hurt me either. I try to remember I am not alone in this daily struggle, millions are dealing with ET as well and feeling the same feelings I have.
Second, I try, with difficulty, to not allow the ignorance of other weigh me down. I can’t speak well due to my tremors, but I will speak as clearly as possible when a rude salesperson or clerk insists on being a jerk. Such as ignoring me when I ask for help with placing my groceries in my cart, or helping me lift something. The manager will hear from me, even if nothing is done about it.
Lastly, I try to adjust. I use a an old plastic tumbler with a melted in side for drinking. My mishap in the kitchen with this particular cup being to close to my stove’s heating element, has created a perfect indention for my finger to grasp with ease making the tumbler easier for me to hold. I use spoons and forks with a weight I feel are better for me to handle. I also watch as many sitcoms and funny movies as I can. Laughter is the best medicine.
I hope everyone will search out their own path when dealing with chronic disorders that place our lives in a tailspin. Most of all, let’s practice patience, patience, patience. Those poor souls who treat us rudely need all the experience they can get!
Look for more information about Essential tremors at the International Essential Tremor Foundation’s website: http://www.essentialtremor.org. Their website has helpful tips for dealing with ET as well as articles about ET from medical professionals in this field of neurological study. You can also find articles about ET and Parkinson’s disease at the Mayo Clinic’s website, http://www.mayoclinic.org.
“I am nothing but a pure !##$%!” I exclaimed to my daughter after yet again another encounter with a rude clerk at our local big box store. “I guess I expect too much.”
My daughter laughed. No,” she said. “You are just tired of being treated like one.”
I know people cannot often “see” a person’s disability, and jump in to help the soul. But once in a while, it would be nice if people could stand up for “The Golden Rule.” Most of us were taught this in school, so many others learned it in Sunday school; the one from the Bible; “Do unto others, as you would have them do unto you.” That’s the one.
I had just about given up this week before the week really got started. My Sunday evening that had no mistakes in it yet was halted by a dead car battery. My daughter and I were “coerced” by our 5 pound puppy dog, into an evening ride around town. All dressed up and nowhere to go as my daughter turned the key and…nothing.
I won’t go into details, but let’s just say our car manufacturers “roadside assistance,” was more headache than the dead battery. Monday morning was turning me into that nasty word mentioned above. I was feeling like the world was against me. My tremors began to expose themselves as the worst part of me fumed and prepared for the worst. Luckily, the car only had a dead battery, and nothing more, but the hit to my purse didn’t make me feel any less !@#$%^!
With a new battery, my daughter suggested we grab a bite to eat. It was lunchtime by now and we were not without a coupon from Hardees in the glove compartment, so we worked our way through the lunchtime crowd of locals and construction workers for a Thickburger. I grabbed a seat while my daughter placed our order and filled our drinks. Maybe a little food and a pause in the day would make me feel better and forget about my troubles. It didn’t work.
My burger was a bit overdone with condiments and the heavy mayo was making it impossible to keep the sandwich together. With my trembling hands, getting the slippery burger to my mouth was a challenge I couldn’t take on. I asked my daughter if she could return the burger and ask the manager if I could have a fresh bun. One with less condiments.
My daughter returned. “They’re making you a new sandwich,” she said. “They were really nice about it.”
“That’s a switch,” I said with a sharpness on my tongue. My daughter nodded in agreement.
A minute later, a smiling face brought back a new burger and apologized for the old one. “I am sorry about that. I understand how hard it is to eat such a big burger like that, and when it’s got too much on it…”
I took hold of the young lady’s arm. “Oh, it’s okay,” I said. “It’s just that my hands shake real bad and it’s hard for me to hold a sandwich sometimes.” The lady smiled and leaned over to me. “Would you like me to cut it in half for you? Would that make it easier?”
I was stunned. “Yes,” I said quickly. “That would be heaven.”
The manager disappeared back into the kitchen and left me and my daughter dumbfounded. We looked at each other in amazement sharing our thoughts and wonder at that level of consideration, especially in a fast-food restaurant. Those encounters are so rare in today’s world that we find ourselves a loss for words.
It shouldn’t be like that. Kindness for others should be the norm, not the exception. But with our fast-food, big box store, giant supermarket world, corporations are more concerned with dollar signs than customer service. It is a real shame. Especially for those of us on budgets and fixed incomes to which these establishments cater, we find ourselves prepared for a consumer experience that is wrought with moody teens who believe this is their world and the rest of us are just taking up space in it, and frustrated souls tired of trying.
I remember days gone by when our local “supermarket,” was the corner store. My mother, who was often house-bound, would call up the store manager and tell him what she needed. Soon came a knock at the door and the manager, loaded down with groceries, appeared. A thank you ma’am always followed. He did that for all his customers. If someone needed groceries sent to them, he closed up for as long as it took for him to deliver to his customers, then returned and opened for business again. Those days are long gone.
The manager returned with my burger, neatly cut in half and still wearing a smile. I thanked her, along with my daughter. We chatted briefly before about this and that, (this is the South after all), getting to know one another a bit before the young lady excused herself and returned to her duties.
My day lightened and it was all my daughter and I could talk about on the way home. Once in a while, even in today’s society, kindness reigns.
Anyone afflicted with Essential Tremors understands that too familiar feeling of helplessness that can overwhelm like a dark cloud of an approaching thunderstorm. It brings along with it, worry and thoughts of gloom and doom as we try to manage simple tasks the rest of the world takes for granted. Those feelings persuade us into believing we are nothing more than a medical condition; a disorder, a diagnosis without cure.
In the Christian faith, we are taught that God’s power is made perfect in our weakness. It was through Christs’ suffering that we were made whole again and reunited in peace and union with God as he intended, but here on this earthly plane, we are broken vessels and must bear in the suffering of Christ so we can also share in His joy. That joy is oneness with Him and the ultimate happiness that we will be reborn with new bodies in the heavenly realm. It is easy to forget those promises when we hurt. God feels very far away and we wonder if our pain will ever end, or at least, be given a respite for some time. A chance to know something other than what we can’t do is a real pleasure, even if it is only for a short time.
As I have mentioned before in this blog, I live with my daughter and our little dog. Our fur baby is a blessing and licks away many tears when I feel my tremors getting the best of me. My daughter takes care of me and helps with most tasks I find impossible on most days, She cooks, helps me with laundry, reassures me when the tremors are bad. She drives me to my doctor appointments which is a huge blessing as our family physician is an hour away. I am truly grateful for her help. Sometimes, the tables are turned though, and last week was a true test of my faith and my ability to rely on him in troubled times.
My daughter suffers from migraines. And though many times she is able to cope with a mild attack, there have been some that have rendered her helpless and in such pain she cries, praying that relief will come. As she suffers with many allergies and asthma as well as a heart condition, she is unable to take many medications for her migraine attacks. We have been turned away at urgent care centers with the platitudes of “Hope you feel better. I’m sorry we can’t do anything for you.” Ice packs, Tylenol, and rest are her only comfort.
The times during major attacks, she vomits uncontrollably. And I mean, uncontrollably! She can’t keep down ginger ale. Soda crackers, Gatorade, dry toast are not the most palatable foods, but come most recommended for nausea. My daughter can’t keep down a Tylenol for vomiting it right back up. The pills for nausea prescribed by her doctor is not even immune. And when she had been vomiting for 24 hours last week, and the migraine raging still, I had no choice but to brace myself. She had to get to a doctor and I would have to drive her there!
This is no easy task. We live in a small town with one hospital that is renown for its ineptness. Not even local nurses will visit. My doctor’s nurse stated that if she were dying, she would rather be driven an hour away to a hospital in the city than let anyone at the local hospital near her. Our nearest option is a 35 minute drive on one of the busiest interstates on the east coast, (add to that, this was a Friday afternoon) and I was terrified. I never drive at night anymore and never on busy roads with heavy traffic. The section between our home and the doctor is notorious for fatal accidents, but my daughter was sick, and when our children are suffering we will not let anyone or anything stand in our way!
I got my daughter into our little car and sat down behind the wheel. I prayed with hands clasped at my chest, pinched my eyes closed and spoke out, “I can do this,” I repeated over and over. “I can do this.”
God is depicted in the Bible as a loving parent who looks over us. Maybe my mother bear protective nature is how God feels when I am hurt. He wants to take away my suffering, and he knows he can’t as long as I am in this crude, earthly shell. But no matter the obstacles, he is going to help me through the toughest part while I am here apart from him. When our children are growing inside of our bodies, we can control what happens to them, to a certain degree, but once they are born, we are separate, and that feeling of helplessness when they are hurt, sick, or in pain is more than we can bear.
My daughter is feeling better now. After a shot in her backside to ease the nausea, she was able to keep down her Tylenol and some crackers and cola. I got her back home and though exhausted, I feel like I climbed Mount Everest and back down again. When she had a hysterectomy 3 years ago, I had to take the wheel to and from UNC Hospital, a good hour and a half from home, but we made it. I was sweating, nervous and thanking God for his answer to my many pleas for safety and her recovery. Our dog, who normally likes to pounce on my daughter’s belly while she sits in a recliner, was gentle and happy to nestle down next to her avoiding her tender belly. Animals have that special sense and know when and where we hurt. Though she doesn’t particularly know what to make of the noises my daughter makes when her nausea flares up.
Today we are safe. I know there will be more battles in the future, but I know God will be there as he is for anyone who calls on him. Some days I doubt when the hurt is too much, but I will remember these moments when he has brought us through and remember he is also a parent; feeling the hurt and pain and wanting to take it away, just as I do for my own children when they are suffering.
What a blessing to know that whatever we encounter, God knows what we are feeling, and sends others in our path to share the journey, even on a busy interstate.
Everyone needs a guardian angel and I am most fortunate that I have four. Two of them have passed on to their heavenly reward, but God has left me two that care for me in different but loving and caring ways.
If you follow my blog you will hear me speak often of my daughter, without her love I’m not sure that I would not have ended all of this. I’ve often wondered why am I still here, I can on occassion feed myself, getting food to my mouth instead of the table or floor is a major accomplishment. My daughter never gives up on me, when I get to shaking really bad she gently reaches out and holds my hand and says,”Mom its okay.” It doesn’t matter to her if we are at home or in a restaurant, if I start to cry she just hands me a tissue and acts if nothing is wrong. She says our prayers holding my hand and I can feel her hand just shaking because of me, the squeeze gets a little tighter, but I know she is saying its okay. For the past week preparing for the onslaught of Hurricane Florence has been difficult for both of us, the stores have sold out of water and the gas lines are long, but somehow my angel has equipped the home with water, food, medications and the car is filled with gas. My angel always telling me, “We are together and God has looked after us.” I guess my mind is stuck on an incident where our home was struck by lightening and we came so close to death as the bolt of lightening shot across our living room floor just inches from where we were sitting.
My other angel is a four legged five pound designer mutt. She’s little but so loud. Born on my birthday in 2010 I have a connection with her I don’t understand. She is really attached to my daughter, but the moment my shakiness and tears get really bad, she is by my side, scrambling to be picked up and climbs to my right side. She often positions herself with paws around my neck preventing me from moving and begins to clean every tear. When all the tears are gone she will sit down in my lap and just look at me. If I make an unusual noise during the night she barks until my daughter awakes and my little angel comes to my side scratching to be picked up.
I don’t know why God has put me through so very much, I’m sure others wonder the same thing about themselves, polio as a child, arthritis, and now ET. I remember one day my daughter took me to lunch, I was having a very bad day walking, I encountered an elderly gentleman in the parking lot who was also having trouble walking, he reached out to my arm and said, ” Keep pushing on.” We both went our separate ways, but with my little angels I will try to keep pushing on. God Bless
It seems very few people understand just how difficult the daily lives of those struggling with mobility issues can be. Today, was no exception. Just trying to go answer a call of nature puts us in a bind.
Today, my daughter, who is an aficionado of late 19th and Early 20th Century history, took in a museum visit featuring the 100th anniversary of World War I, I was luckily able to get through the entire exhibit with the help of my walker. There is something about my tremors that can make me very tired and sitting once in a while is a big help. I really needed to go after over an hour of perusing the artifacts and memorabilia of the Great War when I felt a sudden urge to visit the restroom. Getting there was not a problem, using the facilities was another story.
I found out that a handicapped accessible symbol by the door doesn’t mean handicapped friendly. The wooden door to the ladies restroom was so heavy, it was all I could manage to get the massive structure open with one hand and manuever my walker with the other. Once inside, the stall designated for handicapped persons was only sized large enough for me and the walker, as long as I didn’t close the door for privacy.
What made matters worse was that I had to fold my walker and place it on top of the toilet to take care of personal business. Once finished, I had to manuever the walker off the toilet, get it unfolded and try to work my way out of the stall without falling or screaming for help!
It is understandable for many who design public restrooms to believe that is well enough to place a handrail in a slightly larger stall and think this will suffice. I propose the architects designing public toilets be forced to work their finished and completed projects with a walker in front of them, or sitting in a wheelchair, or any other apparatus used by handicapped persons to see on what level their thinking rests.
I would like to think every public toilet could be designed by asking for input from those who are handicapped before drawing up their overly simplistic plans and designs. As this toilet was located in a state museum, and recently renovated, I would think they had better sense. All the money allocated for building an elaborate structure as a showplace for our state’s history and a bathroom right out of the 1980’s!
The museums’ comment card was filled out by my daughter and I hope the card will not only be read, but its’ suggestions taken to heart for future museum goers.
Next time you are stuck in one of those horrid bathroom situations, don’t hesitate to speak up. It may not help change things, but keeping quiet will never change the status quo!