My Holiday Spirit is a Bit Shaky Right Now

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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.

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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.

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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.

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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.

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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!

What is an Essential Tremor?

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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.

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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.

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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.

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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.

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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.

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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.

Once In a While…Kindness Reigns

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“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 !@#$%^!

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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.

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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.

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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.

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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.

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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.

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Shakin’ on the Interstate

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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.

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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.

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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.

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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.

MyAngels

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.

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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.pippa

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

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Help! I’m stuck in the potty!

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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!

Today, All I Need is Understanding!

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Let’s all try some compassion!

Today has not been a good day. From the customer service rep who exclaimed, “I can’t hear you. Speak up.” And then a relative solding me for not walking more even though they know my knees are arthritic and sometimes just buckle under me. I feel like today, just giving up.

I am so tired of constantly repeating myself to people when my voice trembles from my ET. I am tired of having to apologize every time my hands shake and I have to ask my daughter to sign my name on a document. I hate those credit card machines at the checkout where you have to sign. And if I drop one more supper from my plate, or juggle another drink that ends up more on my carpet than in my glass, I may scream! Actually, today, I did just that. It didn’t help.

I pray for God to help me understand why I have been dealt so much in life. The tremors are like adding insult onto injury. I didn’t ask for them, so why to such insenetive people treat me as if I have? I didn’t ask for scoliosis when I was 11 years old. Back then, (1950’s), there were few hospitals in my state offering surgery for this condition. I was taken miles away from family and schoolmates and wrapped up in a cast from my chin down past my waist. I was reprimanded for crying and now when the tears flow from my shakiness, I feel like I am 11 years old again.

With the internet, information is at our fingertips in seconds, and yet, I encounter more ignorance with every passing day. At 77 years of age, I still have to ask for assistance when having my groceries checked out at my local supermarket. Some cashiers are kind enough to ask if I need assistance, but this is the rare occasion and not the norm.

When did sorry manners and a complete disregard for the elderly and/or handicapped become an excuse for rudeness. You don’t need to know my history to behave in a civil manner. Complaining is a waste of time. Managers spill forth the same excuse as if it were rehearse. “Oh, I’m sorry. This behavior is not what our store is about. We are about customer service.” BAH! My next visit is another bout with a rude clerk and me getting angry with myself for not speaking up again. Or worse, crying because I did. I feel like I have jepordized someone’s job, when I should be the one feeling hurt and put out.

Essential Tremors are not a condition I wanted, nor was my scoliosis. I just try to get through the day with the same dignity I expect of others. Maybe that is our problem. We expect others to treat their fellow humankind with compassion when perhaps they are incapable of this basic mannerism. My daughter often reminds me, “Someday, those people are going to reap what they sow.” And, I admit, it is shameful for me to think that it might be the best thing for them. Maybe if everyone who has ever looked down on someone with a physical handicap, could walk for a day in their shoes, the world would be a better, if not more understanding place.

I hope parents of teenagers will read this and take their child aside when they attempt to enter the workforce. Tell them everyone needs a kind word and a helping hand once in awhile. Understanding never cost anyone anything. It is a very inexpensive lesson to learn and will profit everyone greatly.

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Sometimes, It’s Better to Laugh!

Okay, to begin with, there is really nothing funny about having essential Tremors. I have cried so many tears and hurt so many times, I can’t even count. When I look back over the years and how many episodes I experienced with shaking hands and an overall feeling of unsteadiness, I wonder if it had been ET all along.

Nearly thirty years ago, my daughter and I ventured out for a day at our local flea market. The parking around the fairgrounds where it is held every weekend is very sparse and a busy road separates much of the parking from the market area. As I began across the street, I had a sensation of “going down.” Next thing I knew, I was on my knees surrounded by spectators with no interest in helping me out of the road as cars approached.

This wasn’t the first time I had this experience. One evening, again with my daughter, we took in a movie. After howling at “Tootsie,” we were on our way to our car and I simply walked right off the curb. I just went down. My daughter looked over expecting to see me and I was on the concrete. She got me up and we had a little laugh. We both just assumed I had not noticed the curb drop. But we had been to this theater on several occasions. Why had I not noticed the curb before. I had never walked off a curb without noticing it.

Those incidents were decades ago. Now I wonder if those were part of essential tremors. I have fallen in the past couple of years. Once outside putting away a carpet cleaner in the outdoor shed. I stepped back off the step and hit the ground. My head struck the step but I was not injured. I cried and yelled for my daughter to come and help. She picked me up, worried that I needed to seek emergency help, but I was fine other than being scared and bruised.

Just this past winter, I fell again. I was putting out some recycling and just went down again. I have no understanding of what happened. I didn’t black out. I didn’t step wrong. I just was on the pavement of the porch with a bloodied elbow. My daughter came to help me up and get me cleaned up. When I put weight down on my right leg, I thought I was seeing stars! I had strained my groin and my daughter spent the next week bringing me a  bed pan so I could pee! It hurt too much to get to the bathroom. I kept ice packs on my groin, (not the best place for them), and popped ibuprofen and Tylenol for pain. It took weeks, but I was finally able to walk without pain again. That is, unless you count my arthritis.

I haven’t heard of people falling who have ET. Maybe it is a separate issue. But doctors and neurologists have ruled out Parkinson’s and my strength has been good. I worry one day I will hurt myself badly. I have shaken as I tried to prepare meals. I have not burned myself yet, but I worry I will. Tub baths are no longer an option. I have a bathtub seat I use each time I am in the shower. Small things like opening cans and holding cups of tea are a challenge to say the least. Sometimes my food never makes it to my mouth as my hand trembles and I cry from not being able to just taste my food. I make apologies for my shaky hands as nurses try to draw blood or take my blood pressure. They say it’s okay, but I know it isn’t. Walking is difficult on many days. I have to use a cane and hold on to my daughter’s arm. I make a few stumbles and pray no one around me thinks I am a staggering drunk. I try to laugh. My daughter laughs. It is better than tears no matter how much it hurts.

I remember one evening years ago when I poured myself a cup of milk before bed and “went down,” as I wandered to the couch. I hit the floor but I was able to keep myself steady enough to set the cup on the floor beside me. It was then that our Cocker Spaniel, Goldie, came over and without a care, began supping up the milk out of the cup. I laughed heartily over that one.

Those times, I find it easy to laugh at the shakes, the stumbles, the uneasiness. I have cried too many tears, and I will cry many more. I just try to keep the memories of laughs so the tears are easier to bear.

Welcome to My Shaky Life!

I don’t remember exactly when I first noticed my tremors, all I knew was that my hands would shake. Before I retired, I had trouble with my left hand whenever I would try to type. My hand shook and made corrections to every word necessary. I decided at my next doctor’s appointment that I would ask about the hand shaking. I was hopeful there would be a simple explanation such as too much caffeine, or too much typing and not giving myself a break, but as I held out my hand before him, he just looked and the trembling and said, “Hmm, that’s interesting.” Nothing else.

I left the doctor’s office more confused and sadder than before. What if it got worse? Would I be able to type in my job. Many duties required me to type even though I was a receptionist at a busy non-profit organization. In between answering 200-300 calls a day, I was expected to address envelopes for other organizations across the state, as well as type up letters for busy CEO’s.

Back then, I had no choice but to keep my problems to myself and hope the trembling would just go away. I was in my 50’s then and the idea of starting over was not in my future. I simply hid my tremors as best as I could.

As years passed, and no amount of doctor appointments offering an explanation or a diagnosis, I realized, early retirement would be my only next step. I didn’t want to give up an opportunity to earn more towards my retirement benefits, but I just couldn’t keep on as things were. In December 2005, I left employment for good and the struggle to keep up with the demands placed on me. Retirement wasn’t and still isn’t easy. I have a modest pension, and Social Security, which I find becomes less secure everyday! But there was hope on the horizon, somewhat. I found a GP who decided to send me to a neurologist in a nearby city. After years of being left to wander what was wrong with me, I was diagnosed as having a condition known as Essential Tremor. I was told it was not Parkinson’s Disease, as I had feared. I was also informed there was no cure and no treatment other than medication. And so, my journey was now labeled, but the rounds of various meds, nerve conduction studies, and feeling like a zombie after every “new,” medicine vowed to relax my tremors, made me feel like a lab rat.

I have cried endlessly. And some nights, I find sleep impossible. The life I once had is gone forever. I can no longer enjoy the simple day-to-day tasks that others take for granted. I can’t trust myself with making meals as my hands shake and dropping plates, cups, and food has become normal. I don’t want to visit restaurants as my shakes can come on so quickly and holding up a fork or spoon to my mouth is sometimes impossible. I have sat on my hands in an attempt to control the shaking, but this only makes things worse. I have actually slapped myself in the head numerous times and have been unable to control my hands once I have a grip on something. I almost always have to ask someone to help me with simple chores. My daughter, whom I live with, helps me in times of need. She tries to console me, but it doesn’t help much. Living with essential tremor is not something one can understand if they haven’t experienced it for themselves. People stare, and I wish I could just stand up to them and say, “What’s wrong with you people? Haven’t you ever seen an old woman shake before!?”

So, this is my journey so far. I know there are many more people suffering with essential tremors. I hope by sharing my experiences, tears and daily struggles, I can give someone understanding in a very not so understanding world. If you would like to comment, please do. I would love to hear from others and your experiences as well.

Love and hope to everyone, Nina