Taking Charge with Parkinsons

Devils or Angels

Post Contributor:  Dan Roberson

When I was diagnosed with Parkinson’s Disease twelve years ago my symptoms were slight.  My muscles cramped and I had trouble walking but after taking medication I looked and felt great.  Yet there were days when I stumbled and I showed the effects of PD.

As my condition got worse another problem arose.  Arthritis had severely damaged my knees.  Every day I stumbled along in excruciating pain.  But when someone would ask, “How are you today?” I would always say, “Great!” for I didn’t want to bring negative attention to myself.

Eight years later I had one knee replaced.  The operation was successful but the healing process was slow, due to PD and also because the other knee was equally bad. I still didn’t have a good leg to stand on.

Three months later I had the second knee replaced.  By then the first knee was functioning.  When I had been cleared to drive by my doctors, life returned to normal.  I was still in pain as I shuffled along, happy to be moving.

Now I began focusing on PD.  Tremors on my left side were increasing. Sometimes I couldn’t write or type which disturbed me.  Friends were asking if I had suffered a stroke because my face seemed frozen on the left side.  Fortunately I began listening to my daughter’s advice and trying vitamin B, multivitamins, CQ10, and LDN.  My doctors didn’t encourage or discourage my experimentation.  Visit after visit there was little change in symptoms. I was holding my own for a while.

During this time I decided to wage war against PD.  I exercised by riding a stationary bike, walking, and playing ping-pong.  I tried to be as physically active as health permitted.  I still didn’t walk as well, my face was more rigid and solemn, my hands shook especially when I was tired, under stress, or in need of medication.  I sometimes looked worn and haggard, perhaps due to not sleeping well.

With the medications came other problems.  I was easily confused when I was taking combinations of PD medications and pain meds while I recovered from the knee surgeries. I was single and alone and I was an easy target for scams.  I lost a large sum of money, my beautiful home, and was forced into bankruptcy.

I recovered and took charge of my life.  To sharpen my mental abilities I began playing chess at tournament levels.  I also began writing again.  I became a blogger producing poems and short stories.  Recently my book, “Devils or Angels”, was published and I have hopes of publishing several more.

PD was scary at first but I’ve thrown down the gauntlet and intend to challenge it.  I feel better when I exercise regularly, rest when tired, and stay on my medications.  I’m still taking vitamins and a few supplements that I believe will keep PD at bay, or at least slow it down.  Mentally I’m still going full speed and I’m ready to face a new day.  Is life easy?  No way!  It’s difficult for me to walk or to write or type.  I fall and I still make mistakes.  Despite PD I intend to enjoy one hour, one day, one year, or whatever amount of time I have left.  I don’t fear death but I’m not ready to quit yet.  I have too much left to do. Carpe Diem!

Exercise Tips for Alleviating Symptoms of Rheumatoid Arthritis

image courtesy of WebMD

Post Contributor::  Valerie Johnston :: Healthline.com health and fitness writer

While there is no cure for rheumatoid arthritis, there are several things that you can do to reduce joint pain, joint stiffness, and other symptoms of the disease. A well-rounded, healthy diet; relaxation techniques for reducing stress; and achieving improved sleep are a few lifestyle changes that you can work toward in order to manage your symptoms.

Exercise should also be a key component of your long-term treatment plan for rheumatoid arthritis. Regular exercise will increase your range of motion, increase joint protection, reduce joint stiffness and pain, improve muscle strength, and boost endurance.

Getting Started with Exercise

If you are not accustomed to regular exercise, it is important to discuss your exercise plan with your doctor. Begin with exercises that you can comfortably perform, such as walking, swimming, or bicycling. Only increase the intensity of your workouts after you have built a solid foundation (increased endurance, strength, etc.). A fitness trainer or a physical therapist can provide guidance so that you know how to perform exercises safely and in a way that is suited to your current fitness level.

Before any exercise, it is important to warm up and to stretch the muscles. This will help you to avoid injuries and to comfortably perform a wide variety of range-of-motion exercises. If you experience pain or inflammation during or after exercise, be sure to give your body adequate time to recover. Pain is common during and after exercise, but it should not be excessive. Of course, joint pain comes with the territory if you have rheumatoid arthritis. Using a cold pack on sore joints and muscles after a workout can help quite a bit with pain management. By progressing slowly over time, you can avoid injuries and will be more likely to make a habit out of exercise.

Exercise Techniques for Managing Rheumatoid Arthritis

Tai Chi

There are specific exercise techniques that can help in reducing symptoms of rheumatoid arthritis. For example, tai chi is an ancient Chinese practice that has helped countless people with arthritis to increase their mobility, sense of relaxation, and overall quality of life. Tai chi incorporates many of the essential management tools—stress reduction, physical activity, mental focus, controlled breathing, etc.—that you can use to manage your condition.

Low-Impact Exercises

Low-impact aerobic exercise is one of the best forms of physical activity for individuals with rheumatoid arthritis. Swimming, cycling, resistance training, yoga, Pilates, elliptical training, and walking are all examples of low-impact aerobic exercises that will not cause stress to your joints. High-impact exercises such as running, tennis, and plyometrics add a lot of stress to the joints and bones of the body, which can be especially problematic for people with arthritis.

Resistance training has grown in popularity among people of all fitness levels. Free weights, elastic bands, and resistance machines are a few types of resistance exercise tools that are, in general, safe for people with rheumatoid arthritis to use. The degree of resistance can be adjusted according to your current level of fitness and strength.

Swimming is an excellent way for people with rheumatoid arthritis to exercise. Water supports your body during movement so that the stress on your joints is minimized. If you enjoy walking, try walking exercises in a pool. A swimming instructor can show you how to perform various swimming techniques that will help you to increase muscle strength and mobility throughout your body.

Consistency by Customizing Your Workouts

Discovering physical activities that you enjoy will help you to maintain your exercise routine long-term. If you already enjoy going for walks, for example, make it a habit to get out for a walk every day. If you enjoy variety, design an exercise plan that includes walking, cycling, swimming, yoga, and other fitness techniques. Finding your exercise niche will help you to manage your rheumatoid arthritis symptoms more effectively.

Valerie Johnston is a health and fitness writer for Healthline.com, keeping up-to-date on all of the latest health and fitness news.  With ambitions of one day running a marathon, she resides in East Texas.

Coping with Writer’s Block

Image courtesy of authorlorilotto.wordpress.com

For months I found myself not even being able to look at my blog, or visualize writing at all.  I started to wonder if I still had it in me.  Knowing that I’ve persevered through Rheumatoid Arthritis, I figured, why not apply some of those techniques I learned from coping with the disease to my inability to write?  This is what I came up with:

First:  Research

Reading on the internet is one of my favorite things.  It’s easy to jump from one article to another, everything from asparagus and hangovers to Parkinson’s cures.  Please type in asparagus and hangovers and you’ll find your next go-to after-party treat…pickled asparagus are the easiest to keep in your cupboard btw!  I even love to read those trashy news articles about what stars are wearing, what they’re doing and all the comments that follow.  Why we call it news, I have no idea.  I read forums, blogs, and whatever else strikes my fancy.  I don’t have any real approach to my reading.  I’ll start at one article…like perhaps I have neck pain, and that will lead to something else and then something else, and yet something else again, and suddenly I’m on who dumped who and the worst dressed or some crazy bacterium that’s taking over the nation.  How did I get here?  That’s what a road block is all about, figuring out how to get out of that sticky muck.  Research was the only source that I could think of that would pull me out.   I couldn’t write, not for the life of me.  So I took a road trip, and began my research on “Writer’s block,” and found myself writing again.  Do you remember “clusters”?  Well I did it.  Remember all those writing tools we learned when we were kids?  Those tools got me started yet again.  Wikipedia, you are the best!

I realized, I hadn’t done this in a while, this wordpress thing.  I grabbed a piece of paper, I wrote down “Block” and just like you learned to do in school too many years ago to mention, I engaged in “clustering”.  First circle, “Block”-stone-brick-wall-lego–Writer’s Brain Fart-In the Fog-Stumbling Block.  Then I realized Stumbling Block was good, while Writer’s Block was bad.  That’s a strange one isn’t it?

Then I figured, enough of that…it’s time for free writing.  And here I am, writing whatever comes to mind.  So far, it’s quite scary…but maybe that’s because so much has changed in my life lately.  Maybe I didn’t want to reveal too much of myself.  Maybe I was afraid of not what the reader would discover but what I would discover.

I have been going through some really tough times.  Quite honestly, I did take to journaling before I took to blogging these last few weeks.  I didn’t do much of it, but in the wee hours of the night, when there was no one to call and cry to or ask ponderous questions, I wrote.  And when the next night would come and I’d find myself destroyed with sadness, every cell of my being completely swollen in emotional pain, I would read what I wrote the night before and then write again.  I would find, over and over again in this process that I lived, despite the pain and could move forward, in the smallest increments as each day passed.

I’m still in emotional pain and perhaps sometime I will let you know more about it….  but for now, just talking about that pain is all that I can do.  I know my pain isn’t going to go away anytime soon, and so I have looked to it a little differently than I did before, before it takes over.  Perhaps having RA has given me the tools of coping with pain and NOT expecting it to go away anytime soon.  Rather, learning new ways of coping is the best that you can do.

So what’s up next?  Well hopefully I’m going to be writing to you about what’s going on in my life.  A friend of mine just the other day told me the article I posted wasn’t good.  It was sugar coated, it was 2 buck chuck, it was muck. I was holding back.  I was afraid to reveal again the real me.  It’s like getting into an accident and fearing the road or the building, or whatever it was that was keeping you from putting one step in front of the other.  There is a lot going on with me, and no need to sugar coat things.  I hope in the days that follow that you get to know me again, but in a different way, in a way that I am learning to get to know myself.  One day at a time.

In Case You Think I’ve fallen Off the Face of the Earth……..

artwork by Shel Silverstein

I’m back!

Hi everyone!  For those of you who have followed this blog, you may have noticed that I abandoned writing for an unusual length of time.   What you don’t know is a company that didn’t appreciate one of my articles was trying to sue me.   I had received stacks and stacks of paperwork and I read every sentence.  I was never actually sued, just threatened.  They even threatened to put me in jail.  Who knew, a young rheumatoid arthritis sufferer could get so much attention?  Handcuffs could really hurt.  ;P  I don’t believe even for a second that they had a case but just for the record, anyone can be sued for anything at any time.  Guilt seems like an unnecessary ingredient in the court room these days.  It didn’t matter that I was sharing an experience, and that freedom of speech is a right. What mattered was that I grew tired of dealing with it, and in turn, they had shut me up.  They had accomplished taking away my voice.  Because of this, I left the blog world for a long while.  I even stopped writing entirely.  I didn’t even notice when I hadn’t renewed my internet hosting account.  I was sort of turned off.  Even journal-ling felt like a chore.  I turned my focus on other things, other things that were also going on in my life and taking up all of my time.  But because I stepped out of the habit of writing for so long, when I sat in front of the computer, I was stumped.  How was I able to come up with words?  You know, those letters that are grouped together and with some effort, turned into an entire sentence and then a paragraph that then becomes an entire article?  Even the very first word seemed difficult.  Hello.  Hi.  Uh…..    This time, more determined than ever and knowing that the writer in me still lives, I decided to return to some of my old habits, otherwise that very first article would never appear.  I did in fact post an article but a friend of mine let me know that it sounded like I just wanted to hear myself think….  It was the equivalent of ordering 2buck chuck for guests that are expecting fine wine.  In the right circumstance this is great, but as my first post, it needed to sound like me, not a watered down, just going to write a bunch of mucky junk and call it a post.  No, that wasn’t going to get swallowed easily.  It needed to sound like me, the old me, the me that had an opinion and was fallible and was always searching for something more.  Just an fyi, if you do like wine, I’m all about the organic red Green Fin from Trader Joe’s.  Incredibly affordable!  Oops, that’s a secret because they’re always running out.  Leave me some!  My point is, my voice was still being suppressed because I had buried it so very deep.  I am proud to say I think I’m finding my voice all over again.  I think my writing is certainly rusty and grammatical errors are bound to appear, but I want to say thank you all for your support and thank you dear friend for giving me that critique. It was the permission I needed to bear my soul.   Ahh, I like the sound of that!

Earth Angels: Part Two (Pay it Forward)

One morning I was running late for work, per usual.  My gas gauge was noticeably low, but I didn’t stop for gas, knowing that stopping would add to my tardiness.  I guess you can say I like to live on the edge, or maybe it’s a genetic thing.

See, growing up, my father was notorious for letting his car run out of gas–while his kids were still in it.  It was so bad in fact, that there was this one spot on the road that we knew if we got past it, we were somehow in the clear.  We knew the spot well because we had walked the few miles from there to the gas station a few times.  Perhaps this was a game.   I don’t know why he would do this exactly.  He claimed the gas gauge was broken.  In fact, there were other places at other times, in other areas of California that we also ran out of gas, but that’s another story.  I think  he liked to live on the edge, or maybe it was something else, maybe his reasoning skills are broken.  And Dad, if you’re reading this, you know it’s true.  Back in those days, you could hitch-hike to a certain extent without the same kind of worries that you have today.  Needless to say, I grew up thinking running out of gas was sort of fun?  Now I know that it’s terrible for your car, ruining pipes and so forth and being in L.A., it’s definitely dangerous.  So let’s just say that I don’t wait until the last-minute any longer.

I had run out of gas a long time ago, around the age of 18.  The steering wheel had locked up, something I didn’t know about at that time.  It was scary, but I was lucky because a police officer had seen me, pulled over, and literally pushed my car with his car, around the corner to a gas station.  Was he another Earth Angel?

So here I was, driving to work, with a very low gas tank.  Traffic had come to a stand-still and I started to really worry.  I was on the freeway and I really didn’t know for sure if I was going to make it to the next exit.  Sitting there, in traffic, not moving, was lowering my chances of EVER making it to work.  It was a hot day, but I knew better than to run the air conditioning or else I definitely wouldn’t make it off the freeway.

I finally made it to my exit and my gas tank still hadn’t hit the R yet.  I was convinced that I could make it all the way to work as long as it didn’t hit the R.  That was, until that familiar feeling in my steering wheel hit.  Right as it did, it dawned on me that I had just passed a gas station.  I immediately flipped a u-turn, struggling with my steering wheel.  It just so happened that there were no cars on the street at that moment when I did this, and this is L.A. in the Wilshire district, making it a strange serendipitous coincidence.

As my car struggled on its last fumes, I attempted to roll up to a gas pump.  This was going slightly uphill in the drive-way.  I realized quickly that I wasn’t totally going to make it.  As my car started to drift backwards, I immediately pulled the emergency brake to stop it from rolling back into the street.  I had at least made it to the gas station.  This was a true miracle.

I was feeling REALLY lucky at this point.   I had just ran out of gas and for the life of me, I had no idea how I had been so lucky that I was able to literally roll right into a gas station.  I am a glass is half-full kind of person, so I knew no matter what, I was going to feel lucky for the rest of the day.  I felt like someone was watching over me.  What if I had run out of gas on the freeway?  I was in a fairly safe neighborhood in L.A.  There was nothing that could keep me from smiling for the rest of the day.

Stupidly, I was un-prepared though.  I didn’t know my debit card number by heart (still) and the gas station didn’t take credit cards.  I didn’t have any cash on me and I couldn’t call anyone because my phone was dead.  I didn’t have any change on me, not even a penny.  At this point I was feeling like quite the idiot.  I didn’t worry.  I knew if I had to, I could walk to work, even if I was in heels…… it was only a couple of miles away.   I knew there was a solution, I just didn’t know what it was going to be quite yet.  The guy at the gas station wasn’t going to help me, nor was anyone in line, so I started walking back to my car, wondering what I was going to do next.

Luckily an Earth Angel came to my rescue.  He asked me what happened to my car, (as he was getting gas) and I explained that I was an idiot and ran out of gas and that I’d use my credit card but they only take debit and I’d call someone for help but my phone was dead.  I told him not to worry, that I would figure something out.  He told me to hold on.  I didn’t know what he meant but I said ok.  And then he asked me to hold the gas pump.  “Don’t put the pump back,” he said.  He asked for my keys and so I gave my keys to him.  I wasn’t worried about him stealing my car.  It didn’t have any gas and his car was far nicer than mine, how would he drive two?  So I waited, wondering what his plan was.

He got in my car, took the break off and with the help of another person, (another Earth Angel) who kindly jumped in, pushed my car up to the pump.  He put $2 worth of gas in my car and told me where a nearby gas station was that took credit cards.  I thanked him profusely and said, “I wish there was something I could give to you.”  He said in return, “Just pay it forward.”

He was right.  That kind of kindness comes from somewhere unexplainable, somewhere so sweet and true, it gives me goosebumps.  I don’t know that I’ve paid it forward yet, not quite to that extreme, but I hope to be as kind, to be as wonderful as he and someday be someone else’s Earth Angel.

Can You Trust Your Doctor?

In my case, I don’t think so, but I’m hoping in your case that you CAN trust your doctor.

For those of you that have been following my blog posts, I have been out of insurance (but now have it) for the past three years.  Losing my insurance, because my husband lost his teaching job and we could not afford Cobra, was a blessing to a certain extent because it forced me to try alternative methods, and I found some excellent ones, including my two favorite, Low Dose Naltrexone and Serracor-NK.  Raising my Vitamin D levels and B12 have also been some excellent choices of mine along with other great choices like fish oil, etc., all improving my quality of life.  RA is very hard to control.  Just talk to anyone who’s on the conventional meds and you will find that many still haven’t found the right cocktail, and most are still experiencing joint damage despite taking DMARD’s.   I’m certainly not against drugs, but I will say that taking alternatives has opened my eyes to the possibility of healing my body rather than just suppressing the disease.  So now that I have insurance, it means for me, going back to the doctor, not to see what my choices are, but to get blood work done, x-rays and let the doctor know what choices I’m in favor of.

I hadn’t seen my favorite nurse in several years.  She gave me a giant hug.  “Wow, you look great!” she said.  She asked me what I was taking for my RA.  I told her supplements, but that I wasn’t on any drugs except for the occasional prednisone.  She said, “Wow, it’s really working, you look fantastic!”

Unfortunately, my Rheumatologist experience was definitely a poor one.  Before this Rheumatologist, I had researched and found a much older gentleman who became my Rheumatologist for approx one year.  He was open-minded, not against antibiotic therapy, not against supplements or icing my arm which proved to be the most beneficial in reducing the inflammation in my left forearm in particular, and he had enough experience and knowledge that I felt I had found a good doctor.  When I saw him for the first time, he ordered one x-ray of one hand.

After one year however, he retired.  He told me he found an excellent replacement, a young woman graduating from UCLA.  I was disappointed that I would no longer have my old doctor, but I was open to having a new doctor, especially a woman.  When I met her, she seemed nice enough.  She was young and beautiful and very friendly.  She sent me to x-rays and for blood work.  When the radiologist told me I had 30 x-rays to get done, I thought, “Really?”  At that time, I was not as forthright with my care.  I didn’t put my foot down and say, “that’s way too many.”  Instead, I let the x-rays happen, including one to my throat (which I have hypothyroidism and that’s never a good idea) and including one to my pelvis, (I am of child-bearing age and that’s never a good idea either).  And then I lost my insurance and I got a bill of $700 for all my x-rays.  I fought the bill for over 6 months, and eventually the insurance took care of it.  I was unhappy with the doctor because you should never expose yourself to that much radiation.  X-rays are cumulative, and even though there’s no clear evidence of how much is too much, I’m on a healing path, not a path of increasing the toxins in my body.   And having had a doctor, a great doctor, who only ordered one x-ray, and one later on to compare, I knew that 30 x-rays were approximately 29 too many.

What I find interesting, is that when you look for information on the internet, it’s always, “Well you’re exposed to radiation all the time from natural sources.”  But what makes this ok?  Why would you then want to increase your exposure?  Two wrongs don’t make a right, right?  It’s easy for doctor’s to poo poo the fear of two many x-rays, while billing your insurance, putting money in their pocket, but let me just say this, a close relative of mine who is a radiologist, was quite upset to hear that I was exposed to 30 x-rays before and thought my doctor was a quack and just trying to pay off her college loans.  He chooses not to get x-rays whenever they aren’t absolutely necessary.

I hadn’t seen my new Rheumatologist in almost 3 years and I was convinced that she had probably learned a thing or two since I had last seen her.  Or maybe she would at least know not to give ME so many x-rays.  I was open to the possibility that I just needed to give her a second chance.  Maybe before, she just didn’t know.  She was surprised how flexible I was and how little inflammation and deformity I appeared to have.  So there you have it, my supplement regimentation is working to a certain extent.

At the end of the apt., she asked if I was open to getting my hand x-rayed.  “Sure”, I said, “but please I don’t want any x-rays of my thyroid or ovaries because that can be very harmful.”  She didn’t say anything, so I wondered if she knew what I was referring to and sent me down for blood work and x-rays.

When I saw the technician, he said, “Ok, 18 x-rays today.”  I said, “What?  How can that be?”  And he explained that there were several of each hand, several of each feet, etc.  At first I thought, “well ok, it’s just the hands and feet.”  But thinking back to how many my previous Rheumatologist exposed me to, (totaling two) and considering just 3 years ago, this doctor had exposed me to 30, I told the technician I’d pass.

I walked back to my Rheumatologist office and handed the paper ordering the x-rays to the nurse and said, “Tell her this is simply too many” and left.

I just figured it was time for me to find a new Rheumatologist.  And so my quest begins….

I Finally Started Juicing!!

I don’t know why it’s taken me 5 years to start juicing.  It didn’t seem to matter how many times I read or heard how great juicing would be for me. The thought of  buying an expensive juicer, only to clean it daily, and buy ingredients frequently, etc. sounded terrible.  I’m not much of a cook and I am so busy, I just never realized that I could fit it in my lifestyle.

I had been thinking about juicing for some time, but I owe it to a co-worker from Gnomon School of Visual Effects, Paulli, who gave me that kick in the rear to get going.  She said, “What are you waiting for?”  And I realized, I didn’t really have an answer.  No excuse was a good excuse. This was my health I was talking about!  Buying a juicer this month sounded unrealistic, but she was right, no amount of money was worth sacrificing my health.  If this was going to make me better, then seriously, what was I waiting for?

I realized that I could at least try and use my blender.  If it didn’t work, I could buy a juicer, no excuses. I finally took it out of the top cupboard and brought it to work and put it on the counter, the same day that I bought some juicing staples for the week.  I had a few of the ingredients already, like turmeric, cayenne pepper and apple cider vinegar.

I chopped up a few stalks of celery, the entire cucumber, put a spoonful of turmeric, a spoonful of cayenne pepper, a splash of Apple cider vinegar, a splash of carrot juice that has omegas added, a splash of strawberry Kefir, and finally a splash of the green juice blend from Trader Joe’s.  And walla!  Instant juice drink!  The blender is detachable, so whatever I don’t drink, I just put in the fridge and blend again later.  In fact, day old juice tastes even better!  And the cleanup is super easy.  I just rinse out the blender and it’s ready to juice again!
It took me a bit to get used to the flavor, but I’ve actually acquired a taste for it now!  I’m planning on getting more ingredients…like parsley, ginger, almond milk, kale and whatever else I think would be great for reducing inflammation and adding antioxidants to my body.

Maybe it’s too soon to tell but I would swear that I can already feel a difference.  Two pitchers of smoothies later, I really think this is going to take me somewhere great.  It felt as though it was cleaning my body.  My intestinal health has never been great but since having had RA, it’s been extremely poor.  After juicing I felt like my intestines were saying “Hooray!”  Maybe that’s too much information, but I can feel a giant difference.   Thank you Paulli for your encouragement!

Stay tuned and I’ll let you know how this goes!  Please feel free to ask for advice on juicing.  I have some pretty strong opinions as to what you should and should not be drinking!

many hugs,

Sarah

Follow

Get every new post delivered to your Inbox.

Join 56 other followers

%d bloggers like this: