Well I made good use of my time while I waited for the sun to come up and created a "One Face Of Parkinson's Disease" Group site on Facebook.
Facebook is a closed group for my privacy but if you'd like to follow me an you're not an invited member email me through the comment form.
Had an amazing day with friends today. Went to brunch at our favorite Sunday morning riverside restaurant, The Downtowner, then it was off to the sandbar on our boat to play with the other 50 or so local mariners. We cast our anchor into the shallows and got a reprieve from the 90 degree heat. Spent the next couple of hours basking in the sun and fun and enjoying our good company.
Unfortunately I didn't notice that somewhere in the shallows my Neupro patch must've washed away.
Gradually as the afternoon wore on and then into evening my tremors started rocking and rolling progressively and then with a vengeance. Usually I can lay down and as I get sleepy the tremors subside, but that was not happening tonight. In fact at about 11:30pm I was getting rather annoyed. I started to cry. Why is this happening?
It was my husband that asked the magic question.... "Is your patch still on? I didn't see it when you got out of the shower." Wait!! I jumped up and took my clothes off. GONE!! Thinking back I've been without it for about 6-7 hours now. ONLY 6-7 hours. And I already resemble Michael J Fox on only one side of my body. I roll my eyes.
I'm not sure if I will ever get used to the strangest feeling one can ever have. How can you turn your head to your right and be completely relaxed (I gaze at my hand; open and close it nice and slowly - yup, still very much normal), then turn to your left and witness a rhythmicly rolling shoulder, stick straight fingers that continuous wave hello like they are overly happy to see someone and a cramping left quad all writhing uncontrollably. It's like having a split personality!!
Even though it's been 2 1/2 years of active tremor, because my right side is normal, in my mind I escape and typically live full time on that side. I cope on that side. Its a constant reminder of who I was. The Lisa of my still near, very vivid memory that helps steal my reality for me. This has got to be just a bad dream.
I put my patch on around 11:45. It's almost 2am now and there's no change. Bummer! This has happened before. I should have suspected it earlier. I'm in for a long night. I might as well put it to good use and pray for a miracle. I can use the extra help.
Sleepless in Fort Lauderdale,
Received my newsletter from PAN today (The Parkinson's Action Network) and it included a story about a man in Seattle that is my age, was diagnosed at the same time I started tremoring AND is only affected on his left side. He underwent successful Deep Brain Stimulation surgery that is becoming more safe and more commonplace. Miraculously he no longer tremors and is off his meds.
Read his incredible story here
Maybe it's my miracle too one day?
PS: If you don't already get their newsletter I encourage you to sign up for it at parkinsonsaction.org. It's the best resource for culling the most current information.
Thank you Aunt Diane for introducing me to Partners in Parkinson's. If you have PD or know someone who does this is a "must have" in your toolbox.
I never knew there were advocates out there dedicated to supporting me and you. Sign up to have an advocate call you. They are trained to help identify all the resources you need to help you live well and cope with changes as they happen.
They also sponsor educational events in a handful of major cities. If you are lucky to live near one I encourage you to take advantage. Learn what's on the horizon. And get that all important group support.
Here's to your health and mental well being!!
The one thing I've never been is one who likes to exercise. I've always been slim so have never had to diet or lose weight. I also come from a sedentary family. Exercise was never encouraged or suggested for that matter in the 60s and 70s. Everywhere you read about PD the doctors say "Exercise, exercise, exercise". I say "UGH!"
I feel relatively well on my medications. There isn't any barrier to exercising, except for increased tremor in my left arm and hand when my blood pumps. That would tend to make me (and I'm sure other tremor sufferers) avoid exercising in public as I hate that to be an attention grabber. I thought I might begin with a piece of newfangled equipment they have out for use at the office. I'm in my own private space. And I can keep working. Good combination. But will I like it and stick with it???
As one who doesn't exercise, just researching exercising makes you feel like you've accomplished something without having to break a sweat. I kinda like that. I made sure to spend a lot of time on research!!! Even drank Gatorade to rehydrate.
Not too long after I came across the DeskCycle Exercise Pedaller. Hmmm. I really enjoy a casual bike ride but don't take time out of my day to do any. This could be interesting. It received fabulous reviews. It's only 10" tall so fits neatly under any desk height. Pleasant to look at; it appears in pictures to be very sturdy and uses magnetic resistance for silent operation so I won't bother other people. Love the price: $160 with free shipping from Amazon. I was contemplating a gym membership, but at almost 50 years old know myself very well; I won't use it so will waste $35 or more a month AND feel guilty every day. I ordered it.
My DeskCycle arrived on Tuesday this week and my McGuyver husband put it together. (Actually it's simple to do. A few screws and it comes with it's own tool.) He installed it under my very small, very short metal and glass desk. I secured the Velcro strap included to my rolling chair and put my feet in the peddle straps. That's all it took to get started.
I hate to giveaway the ending but I love this machine!!! I wasn't sure if my knees would clear the desk (they do), if I would be able to work and peddle at the same time mentally (I can!), or if it would make me break out in a sweat so badly I would need a shower at the office (I must not be completely out of shape because no sign of this). The DeskCycle lives up to the write ups. It is sturdy, silent, and provides a smooth pedal. It feels similar to a recumbent bike. I am pleasantly surprised and actually look forward to pedaling every day!!! Yes, I just wrote that.
I pedalled as much as I could fit in for the past 3 1/2 days as I'm getting used to making it a part of my day. It suprisingly added up to 20 miles. It certainly don't remember pedaling that far or for that long. One great thing is you're distracted from exercise by your work!! You could clock dozens of miles and not even realize it. PERFECT! Just like researching you get that high of imagining your exercising, except now you're actually doing it.
After the first day I noticed my thighs were sore (I'm starting off with a tension level of 5 out of 8). By the fourth day my legs do not feel as shaky when I walk. Markedly noticeable while strolling with my dog. Hmmm.
I betcha if I keep this up it really will improve my balance, my muscle tone, my posture (it makes you sit up straight in your chair - awesome bonus), my strength and maybe even trim my legs, thighs and butt. Forget all of that - the DeskCycle is plain fun and easy. Definitely worth the price and I highly recommend it.
Check back with me for updates. I'm hoping this inspires me to add free weights to tone my upper body and then feel confident about that yoga class. Wait, let's not get too ahead of myself. Anyone have a cookie? 😀
Received great news today for the Parkinson's community via Parkinson's Action Network. Read about it here: http://www.congressweb.com/parkinsons/23/takeaction/go/publicgrrecid/27259E19-1D09-296B-DAF9106CA5675121/eid/FJVJWTPCIX
I suppose I should have started this blog before my diagnosis was confirmed last December. It might have helped me navigate the years of wondering what the hell was going on with my body. I kept complaining to my doctor the weirdest nagging symptoms that would not go away. The problem in a nutshell: the entire left side of my body felt like it was dying off. Picture splitting your torso in two right down the center meridian. And one side is starting to malfunction. How strange!
The first visit complaint: nerve pain radiating close to the bone from my left shoulder under my tricep through the funny bone area of my elbow down my forearm and ending in my pinkie and ring finger. The pain was searing. I could no longer hold my chin in my hand with my elbow on the table because the nerve pain in my funny bone area was excruciating. In hindsight, this was the first glaring neon sign ----- that was comjpletely missed by everyone. Pinched nerve? Rotator cuff problem? Carpel tunnel? Suggestion: a chiropractic problem.
I received some relief soon after from a sports medicine doc who gave my shoulder a steroid shot. I still had the pain through my elbow and fingers but it did help my upper arm. Basically I lived with the pain as best I could while avoiding touching my elbow to anything solid!!
About 6 months later I returned to the same doctor (don't ask me why I went back to her) complaining about nerve pain radiating down the area of the femoral artery in my left groin to the top of my leg area in my quad. "Hmmmm.....", she said. Doesn't see any relation to the first complaint. This one is probably a pinched nerve in my lower back. Back to the chiropractor. Probably a result of working long hours sitting at my desk at the company we owned. Apparently I needed to get up and walk around more and that would do the trick. (Yup, second sign of Parkinsons (PD) totally missed. Lucky me)
Another 6 months later I'm starting to lose the dexterity in my left hand fingers (I'm left-handed so writing and picking up a fork was becoming a challenge) while starting to drag my left foot, sometimes easily tripping on carpet. I no longer trust myself in anything but flat shoes. What was I going to do with a closet full of beautiful, expensive high heels? I couldn't bear to part with them. I was sure someone had the answer and a solution. I held on to those heels; I was on a mission..... for the next 3 years.
Doctor visits (for every specialty in the book), X-rays, MRIs, blood tests, EMGs, EKGs, manipulations, steroid shots, cold packs, hot packs, massages, anti-depressants, Clonazepam, acupuncture, special diets - you name it I paid for it. An overnight visit to my local hospital for observation proved through a battery of tests that my body was 10 years younger than my chronological age. End result: nothing wrong with me. A very nice Indian doc on staff advises me before my release that I'm most likely suffering from a severe anxiety disorder and that I should seriously consider ditching the SSRIs and start doing yoga & meditation. REALLY???!!!! One half of my body is no longer cooperating with the rest of me and you think I might have severe anxiety. We paid $10,000 out of pocket deductible for the obvious and weren't any closer to the real answer.
Looking back with my PD knowledge today I shake my head that those last two signs of losing dexterity and dragging my foot are CLASSIC symptoms. Signs number 3 and 4. Because I didn't yet present tremors, NO ONE, not one traditional medical doctor nor alternative medicine doctor put two-and-two together. Tragedy. Years wasted. If I was 80 years old instead of 45 would they have taken a different view?
Fast forward to December 2011. I'm driving my car to the grocery store and it begins. I have my hands at 10 and 2 on the wheel, radio cranked up, and all of a sudden out of nowhere on the road leading away from my house my left pinkie finger starts to tremor. I'm looking at it while I'm driving instead of the road. I think to myself, "well, I wonder if that pinched nerve in my elbow is now causing a twitch". Unfortunately, the tremor never stopped after that day and grew to include my whole hand, then my arm, then my shoulder, then my left side torso around my waist and then my toes and finally my whole leg. It took about a year to complete that whole cycle; it was a gradual progression, not all at once. The good news is as soon as my fingers started to tremor, the nerve pain completely disappeared. It was like the tremors were dammed up in my arm for those agonizing years. Once the tremor erupted, the nerve line was cleared. Ah, relief. But NOW WHAT?!
I head to a new primary doctor in January who diagnoses severe anxiety. (This is getting old.) She tries a series of SSRIs again all of which make me violently ill. I'm having trouble keeping food down and each script is giving me heart palpitations. At this point I'm losing weight steadily. She doesn't believe that I'm giving the drugs a chance to kick in so after the third try she writes I'm a psychiatric patient in my file and bans me from returning until I'm cleared by the local psychiatrist.
It isn't until July 2012 that I'm finally referred to a neurologist for the first time for my symptoms. Understand that I hate all neurologist offices with a passion. My sister died in 1994 at age 28 from Glioblastoma Astrocytoma. Stage 4 Brain Cancer. My worst nightmare. I also had a history of neurology visits as a result of suffering a bout of double vision that was sudden onset and stuck for what seemed like 5 minutes but was probably 20 seconds. The year was 1998. They found an angioma on my brain that required annual MRIs to insure it didn't change size or shape. (It's 2014 and it's never changed. I know this 15 MRIs later). The double vision, as it turns out, was the result of a convergence spasm (my eyes crossed, spasmed and stuck). Benign.
Back to the story. My new neurologist is a lovely Midwestern man who has an inkling that I have PD but my symptoms are relatively mild. Let's not jump to the PD conclusion just yet. He asks if anyone in my family has or had tremor. I reply a resounding "NO". On the way home I call my mom and discover that she, in fact, has Essential Tremor. How do I not know that? I've never seen her shake. Ever. He sends me for an MRI (big surprise) which as all the others do, shows nothing. He believes that since my mom has ET that I probably do, as well. Let's wait and check back in a month to see if my symptoms change.
A month later my tremor is now in my hand, arm, and shoulder. I'm having difficulties hiding it at work and I don't want anyone to know what I don't yet even know. He prescribes Carbidopa/Levodopa 25/100 one tab daily. "See if it does anything to help." That pill changed my life.
Even so, doc is still not convinced it's PD so refers me to THE EXPERT for the entire state. She is the associate professor of the movement disorder department of the state university, which also happens to be an active research hospital for PD. If anyone can spot PD, it's this gal. I call at the beginning of August and her next available appointment is the first week of January!! Seriously??!! I'm suffering and have to wait in suspended animated anxiety for FIVE months for this chick? I'll probably suffer a heart attack or stroke out before I make it that far.
Thanksgiving rolls around. I'm up to two Carb/Levo tabs a day and I fly home to Florida for the holidays to be with my mom. I arrive on Friday night weighing 103 lbs, (down from 125 lbs) suffering from disorientation & confusion, I can't figure out if I'm hungry or need a shower. I'm a shell of my former self. I cancel all visits and retreat to my mother's bedroom. Sunday morning she's seen enough and takes me to the ER.
The ER doc was amazing, Dr. George Blanton. He didn't think I had PD like others were suspecting and that I was freaked out over just imagining was the case. He immediately identified a B-12 deficiency. A what???? Like the vitamin?? Lack of B-12 is causing my vomiting and weight loss and disorientation and confusion and nerve pain?? Uh, YES; yes it is. Again NO ONE tested me for this or picked up on it.
I needed B-12 injections STAT but it was outside the ER doc's ability to prescribe. I had to call my neurologist's office back home to get them to call in the script. My favorite office gal there tells me that they automatically screen every patient for B-12, as protocol, on the first visit to rule out a deficiency. She looks at my chart. It was never done. Son of a *^+#•.
Three months of 1000 mcg sublingual methylcobalamin daily I'm feeling better than I have in a really long time. Symptoms including disorientation, confusion, lingering nerve pain, problems digesting all clear up. Tremor, on the other hand, still trucking along. January rolls around and I see Dr Expert who keeps us waiting an hour but sees us for almost 2 hours of talk and manipulation type testing. She explains that all she sees is PD patients all day, every day. Her conclusion in my case: severe anxiety disorder. Not ET. Not PD. She's seen this hundreds of times with Type A females. Severe anxiety that presents as tremor. I ask if there are any tests we can take to rule out PD. She advises there aren't and she did not want to waste my money. I WAITED 5 MONTHS FOR THAT. (Non insurance portion out of pocket=$1300)
By the time May comes in I'm up to 3 Carb/Levo tabs daily. I'm still actively tremoring in spite of medication. I'm suffering and no one is helping me. Memorial Day weekend 2013 I break down crying unconsolably and call the local Crisis Hotline. They ask if I feel suicidal. "Of course I don't. I'm calling you because I'm losing my mind. I need to be admitted to a psyche hospital where someone will see how sick I am and want to save me." Their reply, "I'm sorry ma'am. Unless you are going to off yourself there is nothing we can do for you." A decade of fighting this battle. This is my lowest point. I've just been turned down by the Crisis Hotline. You seriously cannot get any lower in the pit of despair than being turned down by the phone call of last resort! I call my mom back in Florida and decide it's time to come home.
We liquidate everything and arrive back in Florida on September 29, 2013. Two weeks later I'm in the office of a guardian angel. Let me explain. Earlier in the summer my mother accidentally runs into the Executive Director of the Palm Beach County Chapter of the National Parkinson's Foundation. He tells her he will hook me up as soon as I'm home. Stuart Perlin did just that. I'm now sitting in front of the preeminent South Florida movement disorder PD neurologist, Dr. Cenk Sengun. I had read patient reviews for him before arriving and more than one patient called him the closest thing to God. I wholeheartedly agree. Our appointment was as long as I needed. During that meeting he gave me his cell phone number and told me to text him whenever I needed him. (Are you kidding? Only oncologists do that!). He brought me up-to-date on the latest advances including news that this past summer the FDA approved the first ever diagnostic test for PD. Never before in the 100+ history of this disease has there ever been a diagnostic tool. That tool is a nuclear medicine test called a DAT SCAN which measures the number of dopamine transmitters to see if they are plentiful or lacking. Within 10 days or so I'm undergoing the test. I'm not even off the table yet and the answer is clear. Without a doubt. It's early onset Parkinson's Disease. Mystery solved.
Dr. Sengun keeps me on Carb/Levo 25/100 three times a day plus Neupro Patch 2mg and referred me for a cardio work up to look at my secondary HBP being caused by my PD meds and that severe anxiety disorder untreated for more than 4 years.
A full battery of cardio tests later including a chemical stress test reveals nothing organic causing the HBP, so the cardiologist prescribes Topril XL 50mg then later adds Losartan 50mg. The combination of these 4 meds finally does the trick.
I'm feeling the best I have in years. I'm still tremor dominant but I understand it now and am working on coming to terms with my abilities and my limitations.
It's never too late to start. For me it's starting to learn to meditate, discovering the best diet for PD, learning how to exercise while tremoring, developing coping and communication skills. Starting to slow down and appreciate every single day as though whatever challenges I may face today this is the best it's going to be. Learn to appreciate the mild version I have now (as a result of the current levels of medication) for it may be more challenging in the future.
You'll read that I mourn the person I was because I really liked that version of me. The non-shaky Lisa. I don't quite know what to make of the new me yet, even after tremoring non-stop for 2 1/2 years. I'm hoping this blog will let me look at myself with new eyes.
UPDATED 12/2017: I want to thank my former husband for living this part of the journey with me. For the last 7 of our 23 years together he endured Parkinsons with me. It was scary and rough and ultimately our marriage could not survive this disease. To my soulmate who cares for me now, I don't have the words to express my gratitude for you know what you're taking on and you still ask to do it and allow me to lean into you around the clock for your love and support. The words THANK YOU and LOVE are not strong enough words for how I feel about you. It is an endless flow, as you put it so eloquently. To My mother for ALWAYS being my rock. I'm so happy to be home with you. My best friend, Maria, whose unending love and support has seen me through all my trials for the past 25 years. Truly my soul sister from God. Stuart Perlin for shopping at Publix that single most miraculous day in August 2013. Dr. Sengun for being Dr. Sengun, exactly everything he is, and for loving his patients and his work as much as he does. He definitely saved me. There is a cast of hundreds that have played a part in this journey. You'll meet them in this blog as we venture on.
Be sure to pray for peace and good health for all PD sufferers. For patience, courage and strength for all at-home caregivers without whom we would be in big trouble. For wisdom and strength for all PD related health care professionals that dedicate their lives to caring for our special needs. And for research scientists all over the world so that they may discover that breakthrough.
Feel free to leave any comments, suggestions, and any good tips & tricks to share. And be sure to stay tuned to see where this story leads......
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"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."