Taking Charge with Parkinsons

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!

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

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!

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

Help Pharmaceutical companies learn about you!

Whether you’re taking pharmaceutical drugs, or alternative medications, be part of a survey so they can get a better idea of what people need.

Centocor Ortho Biotech and UCB Pharmaceuticals is looking into researching two specific demographics of RA sufferers. The first group is for people who are using IV therapy and the second group is for people who are not using IV / injection treatment and are not using biologic meds.  Take this quick and easy survey if you’d like to be part of research.  It will only take a few minutes, I promise!  ((CLICK HERE))

Supplement substitutes (for Biologics)

Hello All!  If you are on a biologic, specifically for the treatment of an autoimmune disease or if you are considering one, then it’s important to realize how they work.  Here are a list of biologics that might be suggested to you:

• Actemra
• Cimzia
• Enbrel
• Humira
• Kineret
• Orencia
• Remicade
• Rituxan
• Simponi

Some of these biologics work by reducing tnf protein.  Those biologics include:

Cimzia, Enbrel, Humira, Remicade, and Simponi.

In my opinion, Kineret appears to be the safest of all biologics.  It works by blocking the action of the chemical messenger interleukin-1.  The only real drawback is that it is a daily injection and it is expensive.  But I am not here to tell you about these drugs really, but I did want to give you a brief bit of information on them as we go forward.

There are in fact, supplements that reduce tnf protein.  I can’t say how they work in comparison to a biologic that also reduces tnf protein.  I can’t tell you how much you should take either.  But I will say that if you are on a homeopathic adventure to controlling your disease, then you may want to give several avenues a shot.  Like drugs, supplements are powerful and for lots of people, have been proven successful.  If you are smart about it, you will attack your disease like a doctor would and figure out what supplements might actually work.  If you have Rheumatoid Arthritis, chances are you have too much tnf protein.  You probably have too much Fibrin as well.  But let’s talk about supplements that naturally reduce tnf protein.  Here are your options:

N-AcetylCysteine-click link to learn more about how N-AcetylCysteine reduces tnf protein.

-reduces tnf protein, chelates metals, breaks up mucus, and fights cancer.  For dosage and precautions click here.  For product recommendations, click here.

Lactoferrin-click here to learn more about how Lactoferrin reduces tnf protein.

-binds iron, fights yeast, helping with anemia, reduces gut inflammation, reduces skin reactions, anti-microbial activity-fighting against ecoli, immune defense, anti-inflammatory.

Reishi Mushrooms-click here to learn more about how Reishi Mushrooms reduce tnf protein.

-antioxidant, treats mononucleosis, bronchitis, lowers cholesterol, fights cancer and inflammation and improves sleep

Resveratol-click here to learn more about how Resveratol reduces tnf protein.

-anti aging, anti-inflammatory, anti-cancer, lowers blood sugar and gives cardiovascular benefits.

Monolaurin (lauric acid)-click here to learn more about how Monolaurin reduces tnf protein.

-prevents heart disease, increases metabolism, lowers cholesterol, fights candida, anti-microbial and much more.

There are other supplements that lower tnf protein, but this at least gives you a start.  Off hand, I don’t know what they are but perhaps I could research and add to this list sometime. I just know that if you are fighting an auto-immune disease, it’s important to hit it at all angles and tnf protein is definitely one of them.  Good luck on your quest to health!

((GENTLE HUGS))!!-Sarah