I was diagnosed with Early Onset PD at the age of 49. I am now 67. Will fill in more another day. It's 11:00 am & time to get moving.
Thank you all for the hearty welcome!! This seems to be a very user-friendly (and friendly user) forum.
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INTRODUCTION
It's been a long time since anyone's asked me to write about my journey with Parkinson's. And now, after having documented over 20 yrs worth of the walk I'm glad I did this.
I've decided to begin with what was intended as the conclusion. It's more condensed & focuses on the highlights. Some people want fewer details that others.
WRAPPING THINGS UP
To what do I owe my longevity in dealing with my PD?
•Heredity – So far I’ve been free from any number of physical issues that often trouble people my age, such as heart disease, diabetes, pulmonary issues, etc. I come from healthy genes.
•An involved and caring spouse
•A lifetime of yoga-influenced exercise has kept me loose and limber – the exact opposite of what PD does to your muscles
•In doing Yoga & Tai Chi, you become very aware of your body and learn to listen to the many ways in which it talks to you
•NOTE: Now that I’ve extolled the value of stretching-based exercise I must admit that I’ve never put much time into aerobic and strength-based workouts. Perhaps my bones would be stronger if I’d worked out more often with weights.
•I drink lots & lots of filtered water every day. There are many times I’ll feel like I need an extra nip of CARBI-LEVO, when what I really need is a full glass of water. Consider: By necessity, we take lots of medication, all of which the body considers toxins. It’s the job of the liver, kidneys, and colon to process these toxins. It’s my personal belief that by diluting the medicines (toxins) we ingest, we’re less likely to overload these organs. Not to mention that the body always functions best when well hydrated.
•Chiropractic (occasional) and massage (monthly) work wonders! Insurance pays for the first, but not for massage.
•I put off taking the CARBI-LEVO for a long time – over 10 yrs. I know not everyone can do that. When I finally succumbed, it bought me about 5 years of a semi-return to normalcy, and then the downside revealed itself. I had never experienced freezing or dyskinesia up until the last 3 years.
•I find myself having more frequent melt-downs lately, and episodes of overreacting. More mood swings, too. I’ve read that this isn’t uncommon as PD progresses. My question is, To which is it common – the natural progression of Parkinson’s or, the progression of reliance on CARBIDADOPA-LEVADOPA?
•Because of the strong mind-body connection, mental & emotional stress always exacerbates my PD symptoms. I limit & stagger my social activities. Too much time spent with groups of people, even family, puts me on sensory overload.
•Individual personality traits influence how each person deals with PD. I have a tremendous amount of patience, am inquisitive, and independent. I usually take a positive outlook. On the other hand, I can get too wrapped up in my head, spend too much time on the computer, and become reclusive.
•My husband & I have gone to counseling to help us get through this together. (Counseling covered by insurance) We’ll soon be seeing an eldercare lawyer to help us plan for our financial future. It’s never too early to start thinking of the end
•My Primary care doc suggested I get a second neurologist – one closer to home, in case I need to be hospitalized for something.
•We’ve hired some extra in-home help for a few hours 3x a week. (Out of pocket)
•Yes we have children, all of whom are working and raising their own children of various ages. We’ve stopped analyzing our personal perceptions of what their roles should be.
•We continue to spend time with family & with friends who are used to me sometimes slipping into a bedroom for a short respite.
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Parkinson’s Disease: My Story
I was a 47 yr-old elementary school teacher when my first symptoms appeared. I was having difficulty with writing, with forming the letters, and my writing was getting increasingly smaller (micrographia). All writing tasks were taking an inordinate amount of time, and I was always tired. My problem-free skin changed, becoming very oily, with acne-like eruptions. I'd begun to lose volume when speaking, and my feet shuffled when walking. All my movements had become increasingly slower (bradykinesia). It was only in retrospect that I realized that all these seemingly disconnected changes were related. The only symptom I couldn't ignore was the trouble with writing, as that's what a teacher does for about half her day.
I went to a few doctors who asked me to hold my hands out steady and do a few other things, which I performed perfectly. It was a psychiatrist who was treating me for Panic Disorder who finally came up with the correct Dx.
(Note: Studies in the last decade have indicated that as many as 50% of PWP are Dx'd with Depression, Panic Disorder or some other anxiety disorders prior to their PD. Like PD, Panic Disorder runs in families).
My Dx came shortly after MJ Fox had announced that he had Parkinson's, so there was already a new buzz in the medical world because of his young age, and because he was brave enough to go public.
My school district granted me early retirement in 2000 when it was clear that I couldn't continue; by then I couldn't even write on the chalkboard. So how is it that I'm still alive and functioning, albeit with help, so many years later?
Truly, I don't have an exact answer for you. I attribute much simply to the grace of God. But that’s not very scientific. The best I can do I think is to list some of my family history, medical choices I made along the way, and daily living habits. They may be connected to whatever type of PD I have, they may have no connection whatsoever. Just putting it out there.
FAMILY HISTORY
•My ancestry is ¼ Swedish, ¼ Greek, and ½ Norwegian
•There are relatives on both sides of my family, spanning 4 generations, who have been Dx’d with Panic Disorder.
•I have a first cousin in NY who was Diagnosed with Parkinson’s at the about the same age I was. Unlike me, his first symptoms were tremors, which I still rarely display. His progression has been slow, too.
MEDICATION HISTORY (As best I can remember)
•After some research, my doctor & I decided to put off taking CARBIDOPA-LEVODOPA for as long as possible - this due to its short therapeutic shelf life. I took MIRAPEX (just approved by FDA), XANAX, also fairly new to the scene, and I don’t remember what else, it was so long ago. A few of the meds were so new that appropriate dosage levels were still being worked out. Believe me, you don’t want to be a on too high a dose of MIRAPEX! It’s side effect of compulsive behaviors ruined many people’s lives.
•I finally started on the CARBI-LEVO about 7 yrs ago. It was like getting my life handed back to me! The first 3 yrs were golden, and then the shine started to fade as expected.
•I currently take RYTARY, supplemented w/ occasional ½ pill doses of CARBI-LEVO if need during dey. I also take ZOLOFT, MIRAPEX, AMANTADINE, NAMENDA (a precautionary measure) and MIDODRINE (for low blood pressure). I’m reluctant to share dosage amts as everyone’s needs are so different.
•I’m not a candidate for DBS since it’s primarily used for severe tremors, which I don’t have.
•My primary disabling symptom is freezing, and freezing is a common side effect of DBS, so I’m out of luck. Not sure where I’ll go from here.
PD-RELATED MEDICAL
•Since Dx, I’ve taken several bad falls. I’ve broken bones in both feet (separate falls), broken both shoulders (separate falls, neither requiring surgery), and shattered my kneecap, the only surgery I’ve had in my life.
•I chose to stop driving a year ago because my reflexes were becoming slower & less reliable.
•I struggle with depression.
•I required PT after all my major injuries. During no-fall years I get an Rx for PT anyway, just to keep me on my toes
•My neurologists have been Dr Harold Hurtig (retired) and Meredith Spindler, both of U of Penn Medical Hosp & Univ in Phila. The psychiatrist who manages my Panic Disorder and depression Is Matthew Menza at Rbt Woods Johnson in New Brunswick.
EATING HABITS
•Other than having a sweet tooth, I grew up eating healthy food – very little processed or fast food, and lots of vegetables. My husband & I have pretty much continued in this way. We’re not fanatics, but do try to avoid preservatives, fats, etc, and go organic when we can.
EXERCISE
•While I wasn’t a big fan of participating in organized sports, I exercised for 15-20 minutes almost every day at home. I began this habit in HS & never stopped.
•Teaching kept me physically active all day long, especially the years I worked on the second floor.
•After college I began incorporating yoga, breathing and meditation into my exercise routine. When my girls left the nest I turned a small bedroom into my own personal well-being space. A ballet barre was put on one wall, mirrors on another (Mirrors are SO helpful for executing your movements properly). The room also contained a bookcase which held my yoga equipment, light hand weights, and on the top a small TV/DVD/CD player. Also in the room: a small weight bench (no attachments), and my yoga mat. A large exercise ball was kept in the closet. I had a mini-rebounder for awhile that I LOVED, but I snagged my shoe getting off it one day and broke a bone in my foot. My husband threw it away. >:-[
•I can think of nothing more valuable than the practice of yoga and tai chi to maintain flexibility at any age. Mindfulness training is also useful.
•If any “BIG” exercise programs are offered nearby, get a script from your doc & SIGN UP! Insurance usually pays since the program is designed for PWP. The exercises aren’t complicated, but the payoff is BIG.
•3 yrs ago my husband & I downsized & moved into a 55+ community. Sadly, I’m exercising far less now. I haven’t been able to recreate my former exercise space in the new house. There’s a gym on premise & exercise classes galore, but the gym’s crowded & hazardous for PWPs. Most of the classes are in the morning before my meeds have fully kicked in. And the pace, even for retirees, is usually too fast for me to keep up. (Many of the55+ gals here are stronger & in better shape than I EVER was!
•I have a new script for PT which I’ll begin again in Jan. The therapist wants to get me into the new Boxing for PWP program. We’ll see.
•Over the years I’ve noticed a positive correlation between hard, sustained physical activity and a reduction of symptoms
HOBBIES/OTHER ACTIVITIES
•My need for creative activity led me to numerous hobbies over the years. Most fell by the wayside with the advance of PD. I stuck with gardening until we left our old house, having created & maintained a walk-in, English-style wooded garden & numerous flower beds scattered over the property. My husband & I now enjoy a much smaller, but still colorful garden.
•I’ve always loved to write & read, but as the levodopa is losing its impact, I find I’m less able to concentrate & make decisions.
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MJ Fox has said, “Parkinson’s is the gift that keeps on taking.” How true that is. With PD you have a front-row seat to the disassembling of the all the parts of the whole that were YOU. Things that defined us – made us unique – become hidden behind masks and strange movements. Our thinking & processing skills become clouded. It’s not an easy road.
Exercise and PD
Trying to figure out what's wrong with me?
Functional neurologic disorder/conversion disorder is Not Parkinson's
Is the Parkinson's honeymoon over for me?
I'm very perplexed ?
