Fighting Parkinson’s, and following your heart, part 2

Last week, when I posted Fighting Parkinson’s, and following your heart, I was not anticipating a part 2. However, the dialogue that transpired later that day in a coaching call with our friend Susan from Maine prompted me to write this part 2. Susan kindly has given me permission to write part of our conversation.

Last Thursday afternoon on her coaching call, Susan asked me a very important question about my post, “Fighting Parkinson’s, and following your heart,” from earlier that day.
She asked, “How do I follow my heart when my mind won’t be quiet.”
“What do you mean won’t be quiet?” I asked.
She said, “My heart wants a full recovery, and I want to follow my heart. However, my mind is filled with fear and self-doubt, and my mind keeps telling me that nobody can recover from Parkinson’s, so certainly I cannot recover from Parkinson’s, and then fear sets in and then no matter how many times I tell myself that worsening symptoms are a sign of recovery, my mind keeps telling me I am wrong. How do I quiet that mind?”

I began telling Susan that I engaged in what I call self-talk. I would tell my mind, “You are incorrect. I am recovering no matter what anybody else thinks, you included.”

Then I gave her this example: When I was close to my full recovery, I would have occasional spurts of “normal” movement. On one particular day, the shopping cart took off down the aisle like it had turbo boosters. I was walking in full stride and fast for the first time in 8 months.

In that moment, my first thought was “This cannot be happening; you have Parkinson’s.” As quickly as I could, I told myself, “This IS happening; you are getting better.” I pointed out to Susan that if you look at my knee-jerk mind’s reaction to a recovery event, my mind was in complete denial of reality. The reality was that I was flying down the aisle of the grocery store, and my mind was saying, “This cannot be happening.” Even in the face of recovery, my Parkinson’s mind could not handle it and tried to talk me out of it.

And then it hit me for the first time why this is so hard…for me back then, and for all of you now…CONFLICT!

People with Parkinson’s tend to be conflict avoiders, or should I say professional conflict avoiders. You, and me back then, tend to avoid conflict by making the other people happy, even if it means not speaking your truth (how you really feel). Self talk means conflict within ourselves. And why does this present such a big conflict?

Because, it is the neurologists, and some non-supportive family members, and some non-supportive friends, and most of the rest of the people on the planet who are telling you that you cannot get better from Parkinson’s. And there you are, the audacity of it all, following your heart and actually getting better. And your mind cannot handle the conflict. Your mind flat out denies the reality of your recovery and you struggle, absolutely struggle, to tell your mind, “No, you are incorrect. The reality is that I am recovering.”

And the struggle is because to speak your truth, even to your own self-criticizing mind, is the functional equivalent of speaking your truth to the neurologists, and to the non-supportive family members, and to the non-supportive friends, and to the naysayers, and this will create conflict with them. So, as a professional conflict avoider, you sheepishly say, “Yes, worse looking tremors mean I am getting worse; yes, you are right about the medications; I am sorry I even considered getting better; _____________ fill in the blank with whatever it is you say to yourself to deny the reality of your recovery.

And guess what? Your symptoms get worse. Why? Because you failed to speak your truth for fear of upsetting the other people. You avoid conflict with them, but you create so much internal conflict with yourself. It is why, in the end, I realized I needed to resolve my life-long conflict-avoidance-make the-other-people-happy-even-at-my-own-expense issue. It looked like this: “There is not one person on this planet worth me continuing to have Parkinson’s just to make them happy. I need to be happy first, and that is not selfish…IT IS NECESSARY!”

I have discussed this with many people with Parkinson’s over the last week, and everybody has agreed that this is it. And, I do not think they were just agreeing with me to avoid conflict. This is real. Your symptoms will get worse when you fail to speak your truth, the truth you are feeling when following your heart, and the reason your are failing to speak your truth is because your mind says somebody will not like what you are feeling in your heart and it may cause you conflict.

You feel you cannot win. Speak your truth and maybe have conflict with somebody else. Don’t speak your truth and guarantee you will have internal conflict within yourself. Nobody said this would be easy.

However, you have the choice to speak your truth or not, to be authentic and genuine with yourself or not, to express how you feel in your heart or not. The “or not” choice is based upon fear of conflict, a conflict that may or may not occur in the future. But also, the “or not” choice guarantees the kind of internal conflict that inhibits and prevents your recovery.

Feel your recovery in every fiber in your body, down to the depths of your soul, and make the choice that supports your truth, your authenticity, your genuineness to who you are in your heart. And, do it fearlessly!

Follow your heart to your recovery.

You are worth it!!!

All my best,

Howard

 

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44 Responses to Fighting Parkinson’s, and following your heart, part 2

  1. Karen in Ireland says:

    Hi Howard, wow, big challenge! I do tend to avoid the subject of me not medicating. I just usually say, when well meaning people mention medication, I say ” thanks for your concern but I am happy with the protocol I am following”. Maybe it’s time to start saying ” I’m recovering nicely thanks, watch this space” 🙂
    With love to all my fellow warriors and thanks to Susan for sharing.
    Big love from A woman who IS RECOVERING! 🙂
    Karen xx

  2. Debbie says:

    Hi Howard,
    Great advice, thank you!!! Big love from another woman who IS RECOVERING !!!
    Have a Happy Healing Day everyone
    Debbie

  3. Aneta says:

    Great post Howard.
    I wish i was stronger enough not to let this inside battle to take over me.
    Like you said – it is an everyday, everyminute challdnge.

    • Debbie says:

      Hi Aneta,
      You can do it 🙂 Remember that having faith instead of fear run our lives is a choice that we all have to make on this road to good health. What I love, is that it is CHOICE. One that is consciously made. For me, once the choice was made.the battle was still there, but became much more doable and easy. ! Parkinson’s is curable and I am my own Parkinson’s cure. I am worth it. So are you !
      Have a great day
      Debbie

  4. Helen says:

    Thanks again Howard. Spot on. In some things I am facing fear of conflict but still in other ways I don’t broach topics because of conflicting views! I will endeavour to act on this more. Take this lesson to heart for my self recovery. Thank you Susan too for sharing. Well life has challenges for people who don’t want to rock the boat like me. I need to love my self enough to be free. Love And thanks Helen Aus.

  5. Pat in Florida says:

    This is intriguing- the battle between my mind and my heart. It’s one battle we control both sides in. The Parkinson’s person is used to giving the mind the upper hand. After all, this generally keeps peace with others.
    But here you are saying we need to strengthen our hearts. We do this through self-talk.
    I’m thinking of selecting a few mantras and meditating on them as often as possible.
    “I am not my body, I am not even my mind.”
    “My symptoms are a necessary part of my recovery.”
    “I am grateful for this day, and I am getting better.”
    “My heart, directed by God, is in control.”
    Repeat something enough and the mind embraces it as true. And perhaps the body reflects the reality of recovery.
    Thank you Howard, for a wonderful post!

    • Lohren says:

      Great mantras Pat. Thanks for sharing. And thank you Howard for coming at this from yet another great angle. Love, Lohren

  6. Cathy White says:

    Thanks for all you do.
    I had an appointment with my neurologist today. I am currently taking meds. When the doc. wanted me to take more meds to counteract side effects of current meds. I complied.
    Then, had a scarey reaction to the new meds.
    So I stopped new meds and wont take any more new meds. I found natural alternatives to my symptoms. Spiritual meditation is helping as is painting artwork. Certain spices, vitamins and foods help to relieve my anxiety.

    So, thanks for helping, Howard. Encouraging us to stand up for ourselves.
    Good luck to fellow Parkinsonians. I pray for us all, everyday.

  7. Lohren says:

    If you all want a good belly laugh, look up the Dover, DE video of the cop singing Taylor Swift’s song “Shake it off.” We need a good laugh everyday.

  8. Julie chapman says:

    Yes, I saw it here in Australia and I’m still smiling!

  9. Karen in Ireland says:

    Hi Helen, Pat, Debbie, Lohren and the rest of the gang, great share Lohren, laughed out loud. I love the way he knew ALL the words and the way he composed himself when he saw people crossing in front of him, brilliant! Love a good laugh.
    Karen 🙂 xxx

    • Lohren says:

      Hi Karen, so glad you liked the video. Apparently he is known at the police station as the “class clown.” I believe it! Lohren

  10. Rebecca from New Zealand says:

    Hi all, love reading everyones comments, makes me feel less alone in my daily struggle with this condition.
    What I don’t understand is how some of you are managing on no meds
    I’ve tried and tried to go med free, but I almost cannot function without taking the bare minimum, as I live alone, ( my husband discarded me shortly after diagnosis) and driving becomes downright dangerous, plus I still work part time.
    I’m now in my 4th year, and not about to surrender anytime soon. I’m grateful for having found this community of warriors. Bless you all.

    • judy says:

      Rebecca, I have the same concerns you have. So far, the meds allow me a certain degree of independence but I sometimes wonder if they are hindering or slowing my recovery so I am in process of s-l-o-w-l-y reducing them. Recently, I’ve had a few days when my symptoms disappeared for a short time, so I know I am getting better, even with the meds. But I certainly would like to speed up recovery time, if possible! God bless you!

    • Helen says:

      good on you Rebecca

    • Christine says:

      You are not on your own Rebecca.I have to take 2 meds a day to be able to do the basics and my qigong.This time last year I was on maximum 1 a day and having recovery symptoms as Howard describes af suddenly switching into normal movement.The longest time was 2hours and 20 minutes and it was sublime.
      Then I lost my beloved father,followed by the best cat in the universe..or so I told him and various other adverse life events.Pleased to report these moments are coming back so hang in there!

  11. Karen in Ireland says:

    Hi Rebecca, just to say a cheery HI, hang in there, you are never alone. Great bunch of Warriors on here. I was diagnosed in 2012, but symptoms started in 2009. I can’t speak for anyone else, for me on some level, I felt I created it, so I could fix it. My step brother had parky since 2009, he is in his 40’s, I’be just turned 50. The truth is yes it has been a massive challenge without meds, I just thank God I found Howard last June. I have been doing The Recipe since then. I can’t advise you on meds I just know from reading others comments that people have been able to slowly reduce their meds over time, since doing The Recipe. I will leave the meds advise and guidance to Howard and med users as they know best. All I can say is BELIEVE in yourself, do the recipe every day and discipline your thoughts. Have a couple of mantras that feel and resonate with you and repeat them often, especially when a negative one comes in. I love a line Marie used to say ” fake it until you feel it” . It’s a journey of many stages and many breakthroughs, so be gentle with yourself. You are doing great. You found Howard, your higher self is guiding you more than you know. With you in spirit, Karen x

    • Helen says:

      Good one Karen I feel the same no meds allows me to feel free in myself plus meditation etc. I was diagnosed 3 1/2 years ago plus I fell off a roof. Having done the recipie for three years I feel more whole in myself no worse a bit better in some ways. I have improved mentally physically no tremors wanting full recovery I am working towards it. Cheers everyone. Helen Australia

  12. judy says:

    I would be flabbergasted by the timeliness of your comments, Howard, if I didn’t know that God supplies my need over and over again before I even ask! And, Aneta, it is a challenging, difficult walk at times. I feel really exhausted at times, physically as well as emotionally. But you get better at it as time goes on, you get stronger as time goes on! So, onward and upward; don’t look down, don’t look back, nothin’ but hope! As long as we are doing the recipe, we are getting better! Everything is progress in recovery! (did I say that right, Howard??)

  13. jimmy says:

    es verdad que hay dias dificiles en esta ruta de recuperacion , sin embargo es muy importante mantener una mente tranquila pase lo que pase, porfavor lean este informe:
    Un análisis de más de cien estudios que relacionan las emociones y la salud
    aporta una prueba de la estrecha relación entre la mente y el cuerpo: la gente que
    padece algún malestar crónico (que está ansiosa y preocupada, deprimida y
    pesimista, o enojada y hostil) tiene el doble de posibilidades de padecer alguna
    enfermedad grave en el futuro. El tabaco aumenta el riesgo de padecer alguna
    enfermedad grave en un 60%; el malestar emocional crónico lo aumenta en un
    100%. Así pues, comparado con el tabaco, el malestar emocional es mucho más
    nocivo para la salud.
    Los investigadores del nuevo campo científico de la psiconeuroinmunología, que
    estudia las relaciones biológicas entre la mente, el cerebro y el sistema inmunológico,
    están explorando los misteriosos mecanismos que conectan la mente y
    el cuerpo, y descubriendo que los focos emocionales del cerebro se hallan
    estrechamente ligados no sólo al sistema inmunológico, sino también al sistema
    cardiovascular. Cuando sufrimos una tensión nerviosa crónica, cuando el cuerpo
    se ve continuamente impulsado a « luchar o huir», con la consecuente descarga
    de hormonas, disminuye la capacidad del sistema inmunológico para defenderse
    de los virus y atajar cánceres incipientes, al tiempo que el corazón se ve obligado
    a aumentar la presión sanguínea y bombear desesperadamente a fin de preparar
    el cuerpo para una emergencia. La consecuencia final de ello es que aumenta
    nuestra vulnerabilidad frente a enfermedades de todo tipo.
    En cambio, una mente que está en paz consigo misma protege la salud del
    cuerpo. La mente tiene el poder de remediar el dolor y generar placer. Si empleamos
    ese poder combinado con una forma de vida correcta, una actitud positiva,podemos curar no sólo las aflicciones mentales y emocionales, sino
    también los trastornos físicos.Cuando nos aferramos a los deseos y las preocupaciones con toda nuestra
    energía sólo conseguimos crear tensión nerviosa y agotamiento. Adoptando la
    actitud que los budistas llaman «despegarse del yo» podemos abrirnos a nuestra
    verdadera naturaleza, apacible e iluminada.
    queridos compañeros , muchas personas se han curado de Parkinson , como otro ejemplo la monja francesa. http://www.20minutos.es/noticia/218713/0/Monja/parkinson/curada/
    y hay mas ejemplos .
    es importante tener en mente esto, PORQUE VERDADERAMENTE ES POSIBLE. podemos seguir su ejemplo y en este caso nuestro ser superior nos guio hasta Howard. gracias infinitamente Howard por ser nuestro apoyo.

    DECIDO SIEMPRE LA PAZ DE DIOS EN MI MENTE Y EN MI CORAZON

    Translation:
    True, there are difficult days on this recovery route, however it is very important to maintain a calm mind whatever happens, please read this report:
    An analysis of over a hundred studies linking emotions and health provides evidence of the close relationship between mind and body: People who suffer from a chronic malaise (which is anxious and worried, depressed, pessimistic, or angry and hostile) are twice as likely to suffer a serious illness in the future. The snuff increases the risk of serious illness by 60%; chronic emotional distress increases it by 100%. Thus, compared to snuff, emotional distress is much more harmful to health.
    Researchers at the new scientific field of psychoneuroimmunology, which studies the biological relationships between mind, brain and immune system, are exploring the mysterious mechanisms that connect the mind and body, and finding that the emotional centers of the brain are closely linked not only the immune system but also the cardiovascular system. When we suffer chronic stress, when the body is continually driven to “fight or flight” with consequent discharge of hormones, decreases the immune system’s ability to fend off viruses and tackle early cancers, while the heart is forced to increase blood pressure and pumping frantically to prepare the body for an emergency. The end result is that it increases our vulnerability to diseases of all kinds.
    Instead, a mind that is at peace with itself protects the health of the body. The mind has the power to remedy the pain and generate pleasure. If we use the combined power with a correct way of life, a positive attitude, we can cure not only the mental and emotional distress but also physical disorders. When we cling to the wishes and concerns with all our energy only managed to create stress and exhaustion. Adopting the attitude that Buddhists call “detached from the I” can open ourselves to our true nature, peaceful and enlightened.
    dear comrades, many people have been cured of Parkinson, as another example the French nun. http://www.20minutos.es/noticia/218713/0/Monja/parkinson/curada/
    and there are more examples.
    is important to remember this, BECAUSE REALLY POSSIBLE. We can follow his example and in this case our higher self guided us to Howard. Infinitely thank you Howard for being our support.

    ALWAYS CHOOSE THE PEACE OF GOD IN MY MIND AND IN MY HEART

  14. Barry T says:

    I loved Marie’s comment about “fake it until you feel it” as reported by Karen. It reminds me of the famous fake orgasm scene in the deli in “When Harry Met Sally” and the lady at another table tells her waiter that she’ll have what she’s (Meg Ryan) having. Likewise, I’ll have what Marie’s having – no symptoms!

    When I first began the Recipe many months ago, I came from a mindset of cynicism about saying Howard’s recommended affirmations. But like a good soldier I said them anyway. Gradually, I began to develop faith in my higher power, faith in the Recipe, and faith in myself. I’m even beginning to love myself, feel compassion for my symptoms, and I can even see a glimmer of not minding my tremors, stiffness and pain. So, I think we shouldn’t not do our affirmations because we don’t feel them working. Keep at it, for what we put our attention on in our lives grows and in the words of the I-Ching, “perseverance furthers”

    It’s an amazing path that we’re on.

  15. Karen in Ireland says:

    Hi all, let’s hear it for the boys! Great wisdom Jimmy. Barry, I love your comparison to
    ” When Harry Met Sally” yes we all want what Marie has, no more symptoms! Who knows maybe one day one of us will win the lottery and arrange for us all to fly to Florida and be with Howard and his community of Parkinson’s Free Warriors! 🙂
    We might not make Florida comrades but we can cross the finish line. We have the Recipe….. Let’s keep ROCKING! And when the symptoms keep coming, we just ” shake it off” as Lohrens police guy in the video sang lol.
    Big Love Karen xx

    • Helen says:

      Thanks Karen. Meets love these symptoms away thanks everyone

    • jimmy says:

      Hola Karen saludandote desde Mexico, bien dicho , cuando llegue el 5 recuperado va ser una inyeccion de animo para todos.

      Translation:
      Hi Karen greeting you from Mexico, well said, when the five recovered will be an injection of encouragement for everyone.

  16. Debbie says:

    Hi Everyone,
    Love all the comments this time. Thanks for taking the time to share your thoughts with me.. Thanks for marching forward. See you all at the finish line…….Healthy and Happy 🙂
    Have a great doing week
    Debbie

  17. Melanie says:

    Does anyone else struggle with extreme exhaustion and muscle weakness?

    • Cynthia (from England) says:

      You are not alone there Melanie. I too find the same, not helped by not sleeping well due to difficulty turning in bed and my legs going heavy at night. I have silky sheets and pyjamas which help but still not easy. I do exercise but struggle and find it quite difficult to get myself comfortable. I thought it was just peculiar to me!

      • judy says:

        Cynthia, no, these things are not peculiar to you! I have the same experience. It’s comforting to know others are right there with me! thanx, Cynthia. Don’t forget: we have the best leader and support group possible! We are blessed and I have nothin’ but hope!

  18. Rebecca from New Zealand says:

    Thanks everyone for your kind comments, I shall keep on, keeping on, and never give up.
    So nice to know there are others out there and we can cheer each other along.
    looking forward to having some episodes of normality to report soon.
    God bless

  19. Marie says:

    Hello, Recovery Community,

    For me, the part of successfully coping with counter-productive thoughts of my brain in early stages of recovery was to understand and accept my brain. Instead of feeling that my brain was trying to thwart me and get in my way, I understood that my brain was trying to keep me safe, trying to be sure I wouldn’t make mistakes , trying to protect me from making a fool of myself (which was extremely important to me) and trying to analyze the information coming in to assure that I did not believe something that was false and dedicate all my energies to pursuing something something that might devastatingly disappoint me.
    Fortunately for me, my brain found the information convincing. Howard’s explanation about the dopamine/adrenaline imbalance really made sense to me. Ah yes! my brain liked that. The evidence of other people’s recovery helped my brain relax into accepting that I was doing the Recipe for Recovery.
    But Still there were times when my brain would be generating fear. What worked best for me, and still works for me when my brain is churning, is to acknowledge what my brain is saying and to love my brain… which though it may be misguided is trying to help me. It may be wrong, but it is doing what it is does….thinking and thinking.
    From my heart, with genuine love, I thank my brain for its efforts. And then I try to get it to be more open, more flexible.
    My brain has accepted that it is sometimes wrong and that it inherently has a negative bias. It is looking for danger, and threats. It also accepts exciting research on neuroplasticity: Our thoughts change the structure of our brains, which then changes our thoughts in a continuing loop. My brain knows that it can change, and that those changes can bring me a healthier and happier life.
    With love and gratitude, I won my brain over to better serve my best interests.

    • Thanks, Marie…inspiring and key, I think….so glad you mentioned loving my brain…like a suffering child, Ms. Brain needs compassion, acceptance and love…and acknowledgement for working so hard to keep me safe. Now she can rest for a while, certain that she is loved and appreciated and that she is not alone. Heart is present, grateful, caring, trustworthy, and eager to assist.

  20. Melanie says:

    Thanks Cynthia for responding to my inquiry. It is very comforting to know that one is not alone with certain bothersome symptoms! I had not heard anyone else mention that one so I wondered if it was unique to me!

  21. Melanie says:

    Marie, thankyou for still being involved. Having already crossed the finish line, your input is so valuable.

    Much love and gratitude!

  22. Barry T says:

    To Melanie and Cynthia: You are not alone; I too have difficulty turning over in bed and moving my left leg. Sometimes my frustration level is so high, that I have to yell. Most times, I’m successful at being resourceful, patient and compassionate, but as I said sometimes a good yell helps.

  23. john says:

    This last post made things much clearer for me. You are so right when you talked about a professional conflict avoider. Its been a part of me my whole life but I have never put a label on it. I have been thinking with my mind, Mr practical I am. But not feeling with my heart. When I have something difficult to overcome, I always visualize a mountain. And in order to overcome whatever it is I might need to accomplish, I visualize myself already on the other side of this great mountain having fun and doing whatever it is I want to do. This technique helps me through many difficult days. I see myself, one day, as a free person able to enjoy my life as it was. Thank you Howard for being here.

  24. Tom says:

    Enheartened by this website, Howard and all the blog posts; gives me real, tangible Hope. PDer since 10/07, now on sinemet (3) + Mirapex (1 1/2) per day. Battling the PD mind-set; began working on anger/forgiveness issues. thanks for all your encouragement experiences; In recovery…

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