Fighting Parkinson’s, and living our lives

All of us begin with an obsession over symptoms. It is our symptoms (the small ones we ignored for a while, or years) that slowly made us think, “Maybe something is wrong with me.” It is our symptoms that finally bothered us enough to get us to go to a neurologist. It is a list of our symptoms that is in our medical records confirming our diagnoses. It is our symptoms that others look at when they are determining “how we are doing.” So why shouldn’t we look at our symptoms to determine how we are doing? Because we fall into living our Parkinson’s instead of living our lives.

It doesn’t have to be that way! When we look at our symptoms to determine how we are doing, our view is skewed by something in the back of our heads that says, “All the experts say this is a progressively degenerative disease.” And what do we do? We live our Parkinson’s, and we watch ourselves progressively degenerate. I know I did, in the beginning, that is.

I kept a daily Parkinson’s journal. Periodically on this blog, I have provided excerpts from the daily journal. Consistently, I wrote about my symptoms and how each day I was learning that I no longer could do something I used to be able to do. After a few months of this, my handwriting was so painful and so illegible that I stopped writing. Looking back, that was a good thing because it caused me to stop looking, in great detail, at how I was physically deteriorating, and it got me thinking about more important things, like how much I loved Sally and the children. And, my motivation to ignore my daily external deterioration and focus on my internal healing became stronger.

Here is an excerpt from something I wrote eight months after I had started my Recipe for Recovery:

“I have rigidity in my arms, legs, and upper back into my shoulders. Last week, a friend asked me to explain my rigidity so he could get a better sense of what I am experiencing.

1. My arms — the next time you sit down to eat, pick up some food with your utensil, and while holding your utensil just above the plate or bowl, flex and tighten every muscle in your arm from your shoulder to the grip on the utensil. While maintaining this, try to get the utensil with the food to your mouth. My arms are tight like this all the time.

2. My legs — stand as straight as you can and then put a little bend in your knees. Next, flex your calves and thighs. Now, try to walk. Or do this in front of the stairs and see if you can walk up the stairs without holding on. When you add the symptom of very poor balance to the formula, you can see why leaning forward when walking and holding on when going up the stairs are commonplace among those fighting Parkinson’s. My legs are tight like this all the time.

3. My upper back — it is tight and hurts all the time. I really do not have a good example for you to emulate.

Having a positive attitude is the key to everything. My mind and body have accepted the pain, so I am not consumed by it every waking moment. Deciding every day that Fighting Parkinson’s drug free is a fight worth fighting is what keeps me going. Quite frankly, getting to spend time with Sally and the children to celebrate Mother’s Day yesterday is really what keeps me going.”

Faith brought me to the realization that I needed to live my life instead of living my Parkinson’s. Whether I liked it or not, Parkinson’s was part of my life. Every day, I did my Recipe because I knew it was what I needed to do so that some day, on some far-off-unknown-date, Parkinson’s would no longer be part my life. It let me say, “Okay, Parkinson’s, I accept that you are part of my life for now. However, I refuse to be consumed by you because there are so many more wonderful things than you to experience in my life. I am choosing to live my life and I am choosing to not live my Parkinson’s.”

Often, I have mentioned that I got a lot worse before I ultimately got better. If you look at what were some of my physical symptoms as quoted above, you might find it hard to believe that I was close to a full recovery…but I was…I just didn’t know it at the time. That excerpt is from my blog post of May 10, 2010, one month prior to my full recovery from Parkinson’s. It is representative of how faith slays fear.

And with faith, we can live our lives instead of living our Parkinson’s. No matter how angry or frustrated or worried or fearful of our symptoms we become, the anger and frustration and worry and fear do not make our symptoms go away. We do. We get on our path to recovery, and we have faith in our path and faith in ourselves, and we choose to live our lives knowing that we are healing ourselves from within…our souls, and our minds, and our bodies.

What about our symptoms? They are just something we have to accept we will have for a while. Something that will be part of our lives for now. Something to remind us to stay on our path so our internal healing can take place. Something that will go away once we are fully healed. That’s all they are…life is so much more than symptoms. Don’t you agree?

All my best,

Howard

 

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16 Responses to Fighting Parkinson’s, and living our lives

  1. Leontina says:

    hei ! reteaua de recuperare unde sunteti ,nu este nimeni la orizont,bine vorbesc si singura.Vrea sa va spun ca am luat doi ani suplimente alimentare cu bani multi[ omega3,spirulina,gingo biloba,q10,ganoderma ,etc] si aveam impresia ca nu pot trai fara ele,pana cand am observat ca mi-a disparut pofta de mancare si aveam dureri la stomac si atunci mi=am dat seama ca organismul nu mai asimila din mancare nutrientii ,dar prospectele pline de laude fara suport m-au facut sa cred ca sunt foarte utile .Eu traiesc intr=un sat de munte si am gradina cu flori, legume,meri, piesici,cires[ unul],peri si multi capsuni iau vitamine de aici si energie pozitiva.Va astept sa cominicati.cu drag Leo

  2. Howard says:

    Here is Leo’s translation:

    Hey! Recovery network where you are, no one in sight, okay, I will speak. I want to tell you that I took two years and spent a lot of money on supplements [OMEGA3, spirulina, gingo biloba, q10, Ganoderma, etc.] and I felt I could not live without them, until I noticed that my appetite was gone and I had stomach pains and then I realized that my body no longer absorbed the nutrients from food. However, the supplements’ brochures lead me to believe they were very useful. I live in a mountain village and I garden with flowers, vegetables, apples, pieces, cherry [one], pears and strawberries, and take multi-vitamins, and there is positive energy here. I expect to recover. Fondly, Leo

  3. Teri Rye says:

    I found your website in July 2011, almost 2 years, exactly, after my Parkinson’s diagnosis. I have been on Azilect and Mirapex for about 1 1/2 years. I have chosen to discontinue my meds and begin Howard’s recipe for recovery. I began reducing my meds very slowly in July. I expect to be drug-free by the end of October. Emotionally and spiritually, I am doing well. I’m experiencing more pain every day, however. Today’s post was especially inspiring. I’m choosing to live my life rather than live my Parkinson’s because life is so much more than symptoms! Thank you, Teri

    • Howard says:

      Hi Teri,

      You are welcome. And, thank you for sharing your story. I am certain you will inspire many people who share your struggle because you are succeeding! That is so wonderful, and I truly appreciate you taking the time and having the courage to post this comment. The end of October is just a month away…good for you!

      With gratitude,
      Howard

  4. Leontina says:

    buna Teri,sunt in aceeasi situatie cu tine si as dori sa te intreb daca tu poti merge in locuri publice[mall,parc] fara sa ei medicamente.Eu daca nu iau o jumaatate de pastila nu ma simt in siguranta,tremur,merg greu,intru in panica.Iti doresc recuperare si multumesc pentru comunicare Leo

  5. Howard says:

    Leo’s translation:

    Teri, good for you. I am in the same situation with you and I would like to ask you if you can go in public places [mall, park] without your medication. Unless I take a pill I do not feel as safe because my tremors go hard and I get into a panic. I wish you recovery and thank you for your communication. Leo

  6. Teri Rye says:

    Hi, Leo!

    I do not have tremors, so going out in public is not a huge problem for me. However, because of slowness and freezing, I still have a lot of stress when I am in public. I experience this stress, especially when I am in line at grocery stores or restaurants. When I have to handle money or retrieve something from my pocketbook, I struggle greatly! I try to keep my life relatively routine. That helps! I have begun doing some recommended Qigong exercises. I think they are helping. The biggest roadblocks for me right now are pain and a lack of functionality in my right arm and hand. I have been tempted to increase meds, but have not succumbed to the urge! I wish you well! Stay the course! Teri

  7. Leontina says:

    multumesc Teri pentru raspuns ,ma gandesc acum ca as prefera durerea in loc de tremor,nu este asa umilinta,nu se vede.In urma retei lui Hovard am unele rezultate [fac doar exercitiile] ;nu mai sunt confuza,am miros,iau cu o doza de pastile mai putin ,nu mai am stari depresive fiindca am puterea sa ma vindec la fel si tu.Iti urez noapte buna.Leo

  8. Howard says:

    Leo’s translation:

    Teri, thanks for the reply, I think I prefer the pain now instead of tremor, not so much humiliation because it is not showing. Following Howard’s network, we have some results [more than just the exercises], I am no longer confused, I smell things again, I take a dose of pills less for depression because I do know that I have the power to heal myself, and so do you. I wish you good night. Leo

  9. meredith says:

    Hi Teri and Leo – I feel your pain (and frustration and embarrassment)! When our symptoms creep up, we feel that we are not making progress, and then we avoid public places and crowded situations. When I do not go outside to take a walk, or go to the gym to exercise, or go to the farmers’ market for fresh food, I suffer more. Just remember that there are alot of folks out there with alot worse disabilities than we have (a blind guy in my neighborhood walks to the gym every day and swims – alone! with his white cane and a smile on his face – he is my inspiration!). Most people do not really notice your slowness and tremors, and if they are bothered by it, it is their problem, not yours. Just take a deep breath of chi, and send them your love.
    As I do to you. We can do this! Stay strong.
    Meredith

  10. Nancy says:

    Hey,all. A year ago I also timed my trips outside to after meds so I wouldn’t tremor in public. Over the past months I’ve found that as I decrease my meds -while doing the Recipe of course -a lot of symptoms I thought were the PD were actually rx side effects. It became more obvious the more off-med days I have. So, just something to think about when the meds tempt.
    I still have periods of tremor, and slow down the checkout line too. Oh, well.
    I find my symptoms bother me less as I talk about the PD more, and I talk more because I hope I might reach someone who may need to know for themselves or someone they love that this disease is not hopeless.
    Y’all inspire me daily!

  11. Hillary Balassimo says:

    I WAS DIAGNOSED AT 60 WITH PD. I KNEW 2 YRS EARLIER BUT TO GET DIS. I HAD TO FACE THE EVIL TRUTH. SINGLE ALONE AND STRUGGLING I HATE TO HAVE COMMENTS OR KIDS ASK QUESTIONS…EACH DAY IS NOT THE SAME. GOING OUT IS HARD BUT IT IS WHAT GOD’S PLAN…NOT MINE. WHEN OTHERS TELL ME OF THERE TRIPS AND DATES AND PLANS I FEEL SO JEALOUS AND ANGRY AT MY BODY.GRRRRRRRRRRRRRRR!
    I CHOSE NO MEDS FOR NOW BECAUSE I HAVE A GENETIC LIVER DISEASE
    AND THE 2 DO NOT BLEND.
    I WAS AN ARTIST AND NOW I CANT WRITE. I WAS A HIGH FASHION MERCHANDISER AND NOW I CAN BARELY BUTTON UP.
    BUT I AM TRYING-THIS MY FIRST TIME TALKING TO ANYONE OTHER THAN A BUDDY SO CAKE AND BALOONS PLEASE.

  12. Hillary Balassimo says:

    HAPPY EVENING HOWARD AND THANKS FOR BEING ON THE OTHER END.
    HAVE A GREAT TIME!
    I NEVER DID ANYTHING HOLISTIC-LY SO I AM NOT A FOLLOWER BUT AM OPEN TO READING AND I ALSO SO DO NOT BELIEVE THAT THE DRUGS ARE THE ANSWER. CHARLIE THE TUNA-NOW THAT WAS THE CULPRIT

  13. Hillary Balassimo says:

    my mom has altzheimers for 14 yrs. I think some battles can not be won but it is how you fight them that counts. I have always gotten out of messes and somehow I will find a way.anybody who has it knows that its not for sissies! so soldier on……………..

  14. Teri Rye says:

    Welcome to the group, Hillary! So glad you found Howard and the rest of us striving to beat this disease without meds! This is new for me too, but I’m encouraged by the prospects of RECOVERY! Traditional methods offer so little. I look forward to hearing from you again. Together we can beat this!
    Blessings,
    Teri

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