Last week, I posted, “Fighting Parkinson’s, and the power of acceptance.” At the time I posted that blog post, I did not anticipate a part 2. However, there seems to be some confusion over something I wrote in that post, so today I clearing up the confusion.
In the previous post, I discussed acceptance of Parkinson’s, faith of fully recovering one day, and taking action in furtherance of that faith in recovery. Near the end of the post I wrote, “And it is with this level of acceptance that I learned that even the worst pain or stiffness or slowness never lasted more than a day or two.” Apparently, this statement has caused quite a bit of confusion with a number of you. So, here is the clarification.
First, the confusion expressed to me mostly looked like this, “Howard, my symptoms have been bad for a long time. I do not think you understand because your symptoms were bad only for a day of two.”
Second, the clarification. My symptoms were bad for the nine months I had Parkinson’s. I was physically miserable almost all the time, and occasionally I would get an exacerbation of my physically miserable symptoms that caused me to curl up on the floor and cry. If you read the sentence in the post directly after the one I quoted above, you will see that “never lasted more than a day or two” was talking about the seemingly unbearable exacerbation of symptoms.
You may click here and take a look at my post from May 10, 2010, one month prior to my full recovery. My description of my rigidity after 8 months of doing the Recipe will give you a pretty good idea of my level of stiffness throughout my having Parkinson’s.
I would imagine that if you read the May 10, 2010 post on May 10, 2010, you would not have been thinking “Wow, that guy sounds like he will be getting better any day.” In fact, it was during May of 2010 that most people who Sally and I knew were vigorously telling us that I was failing at what I was doing because I looked so bad, and I had better give up on the notion of a recovery and start taking the Parkinson’s medications.
However, the part that they could not see was what was going on with me on the inside…I was healing, soul, mind, and body. When you get to the end of that post, you will see this:
“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.”
Acceptance. Faith. Action. That is what the ending to that post tells you. It is not something I suddenly thought of last week and put in a post for encouragement. It is something that I lived in my heart of hearts, and I never gave up.
Oh yes, and love. Love melts all blockages. By May of 2010, I was learning to love me. I was fully and unconditionally accepting me. And, I was able to fully and unconditionally be absolutely grateful and filled with love for Sally, Steven, Genevieve, and Victoria. You see, at that point, the love of the five of us was all that mattered…I lost interest in Parkinson’s, and a month later it lost interest in me.
Fighting Parkinson’s is not about putting on boxing gloves and punching it. Fighting Parkinson’s is about acceptance, faith, action, and love. You fight Parkinson’s by creating a vulnerable wide space for your heart to open and your soul to shine and your dopamine to flow.
And whatever misery you face along the way, you smile at it and say, “Okay, apparently this is necessary for my recovery.” If you are doing the Recipe, then this is a truthful statement…whatever is your body’s reaction is necessary in your recovery. That’s right, if you are doing the physical, mental, and spiritual parts of the Recipe, nothing that is happening to your symptoms is bad in your recovery…uncomfortable for you, yes…bad in your recovery, no.
Acceptance. I accept all of you unconditionally as you are.
Faith. I have faith that each and every one of you can have a full recovery just as I did, and Marie did, and Pratima did, and Betty did, and Helen did.
Action. Doing the Parkinson’s Recipe for Recovery® is the necessary action.
Love. I love you all.
You are worth it!!!
All my best,
Howard
Howard,
Perfect message for me at this time. I’ve been feeling like I can’t take it any more all day. And when I feel like that, I don’t believe I’m recovering. This post refocused my thinking. I’m doing the recipe every day, the best I can. So I am recovery. Thank you so much for your constant encouragement and clarity.
Blessings,
Shawna
I love it! !!!!!
Fight it with love!!!
Thanks Howard
Shawna, I’m with you. I’ve had a difficult day today too. I am so unbalanced that I feel like a zombie. On top of that the nausea, pain and stiffness, makes positive thinking extremely hard and the thought of recovery a pipe dream. Yes, love moves mountains and helps tremendously with the healing process. But when one is doing this alone, it takes extra determination to keep going and a lot of the time I do not have the faith that it is possible to recover.
Love your posts Howard. They are always timely and it gives me hope, which I desperately need. Thank you.
Bless you Margit, I’m alone too. My carer left to take a different path in life. I’m doing a lot of self talk to keep fear from his relentless chattering. Margit we are not really alone, we have each other and an army of warriors all shovelling the same shi*. Lol. We will get there, I know we will. Hang in there Shawna too. We ROCK, we really really do. Every day we wake we rock, just for getting out of bed not knowing how we are going to be that day. We survive it, with humour if we’re lucky but each day is one step closer to Recoveryville. Not one of us is ever ALONE, we are all connected across the globe by mutual struggle, love compassion and understanding. Next time you feel alone, just think of the mad but lovable Karen in Ireland championing you on to victory! 🙂 xx
Hi Howard, bless you for being misunderstood with all the love you give. My truth would be that some of us have been battling this for a couple of years even doing the recipe and that’s where at times we lose faith. I have felt and said to you, but why is it taking me so long. I just had to make peace with everyone’s journey is different and with each of us, we don’t know to the extent of damage that needs to heal physically and emotionally as well as mentally and spiritually . Every day I’m still learning how emotion affects me. ” I love and accept myself unconditionally right now” is calming and speaks volumes. 🙂
Big love to all. xx
ps. Melanie S , u mentioned in last post that you tense physically when upset and does anyone identify with that? When someone challenges me I shake from head to toe uncontrollably, rather than freeze. Deep breathing from stomach is the only thing that calms me down again.xx
yes, karen, i identify with that….even though i have a pretty good handle on fear (much better than it used to!), when i get upset I have to get a hold of myself, think about my breathing, talk silently to myself, and remove myself from the situation, if possible..being on this journey of recovery, the recipe, Howard, input from all of you has helped tremendously, many small improvements that probably no one else can detect.
We are the best!…don’t ever doubt that!!
Thank you Howard, as always! I think you are right when you say love melts all blockages. Love of ourselves and love of life. I do love myself, but find loving life very difficult when I am on so much constant pain. I am grateful you shared your own journey with pain. I heard it said that with Parkinson’s, wait three days and the symptom will change. Generally, I’ve found this to be turn when a new symptom shows up. But I have some ongoing pains that make me, like you, want to curl up in a fetal position and cry. I have a lot of stiffness in my right shoulder, back, and hip, which hurt when I try to move, but it is the dystonia in my torso that wears me down. It’s one continuous cramp that won’t let up. Acceptance and a positive attitude are helpful; so is knowing that I am not alone. So many brave souls out there fighting this miserable disease, you inspire me and give me strength!
Bless you Kathy, I identify with your pain, thank God mine is not constant but wears you down when it’s there for long periods. You’re a brave warrior. I wish you a pain free recovery.xx
I take the meds because they make me feel better but I am trying to follow Howard’s recipe and other exercises to lessen the symptoms I have most of the time. Reading all of your comments is inspiring and I thank you for that!
One exercise which has helped me a lot is to go aqua jogging in a fairly cold pool 4 or 5 times a week for half an hour each time. While doing that when I am alone I visualize the flow of dopamine out of a faucet (Howard).
The difference in how I feel at the beginning of my jog and in the end is astounding ; I buy myself about one to two hours of “feel better time.”
Although I don’t know any of you, I think of you and send you sympathy and love…..
Ingrid
Ingrid, I try to get in the water at the beach in Kauai where I live, every day. Although I need someone’s help to float me, I find I get at least one to two hours of feeling better every time. What is aqua-jogging?
Shawna, aqua jogging is jogging/running in deep water (you don’t want your feet touching bottom). You are held up by an a j belt around your waist and you swing your arms as though you are running. Sometimes I do kind of a breast stroke for variety. I find it important that the water is on the cool side; so far it has helped me feel better every time I do it . It is also fun to have people join in and talk (your head stays above water every time). My aqua jogging buddies all have joint problems and we talk about how much better we feel in the water….
Of course, I would much rather be on a beach in Kauai 😀
thank you for the wisdom and experience we are sharing with one another, that way we can be motivated in defeating this illness, and thank you to our beloved mentor Howard who always direct us in the right direction to totally eradicate this
parkinson.
Dear Howard and the fellow warriors,
We are on the same boat. Howard has done quite a lot of research in formulating this recipe. It could not have been arrived on a single day. He gives lot of insight on this battle which no one ever does or bothers. We need to trust our Almighty for the power to be released for our healing and also to exercise our faith to own it. It is all easier said than done but all the more if we want to win we need to toil.
As for the intensity of tremors when disturbed, me too experience the same when put in an awkward situation wherein I loose control. Thanks Karen for the tip on deep breathing which I”ll try to practice when challenged.
The last post for me was one of the best yet Howard, I’ve already read it several times and getting so much from it. I’m beginning to understand the puzzle. I’ve been doing the recipe a few years now but can see we each have our own individual path to unravelling the knots so am beginning to relax on the journey.
Hi Karen and hi Tony good to hear you.
In fact Karen to be honest I’ve realised that nearly all interactions with others unless very close friends or family I feel safe with provoke worse symptoms and any rise in tone of course even worse. So I guess I still have a lot of work to do re self love. Thanks for the advice re breathing.
Good to hear the new voices here.
Love x
Melanie S, every visitor to my home including close family and friends makes me tremor more and freeze! Please dear God don’t say that’s me not loving me, it’s just fear! There are times I wish that everyone just leave me alone, so few much less tremoring! 🙂 xx
Big hugs karen, I’ve started talking to myself as though I was a little scared child and comforting myself like that out loud if no-one is around. It seems to help.
Hello Anita in England and snap I’ve been through the same thing.
Xxx
Hi Howard…I understand. …..Being fairly new to this blog and to your guidance I decided to read your journey up until now to appreciate your road to recovery and the process that got you there. It was also in all honesty to reassure myself. I think it only fair to see the path you took. As for acceptance, I view it to accept the present as it is, not as one of resignation but one of trust in the path I choose to follow. I see illness as something I do not have to struggle, control or fight against, but to quietly and calmly do what I have to do to correct my imbalance. I hope this helps my understanding Howard. Much love and blessings for continued support to us all.
Veronica
Good to be remembered about your situation before recovery Howard. I have exactly the symptoms that you did. But confronted with the distrust from doctor’s it is so easy to loose hope. I have had a period for a couple of weeks now when I have lost faith, much due to my doctor’s comments when I last saw him. – Perhaps you should think about what there is left to experience in life ,( before it’s too late…) I sank like a stone. Next week I have too see him again…
So here I am now filling myself with your positive attitude and Howard’s conviction that we all can make it. Thank God we have this blog to turn to for some hope!
Anne-Marie, you actually don’t HAVE to see him if YOU choose not too. 🙂 Sometimes we have to take back our power. When someone does not support us in our choices, maybe time to let them go. You wouldn’t keep a friend close who was not offering support why should you have to keep a doctor? Just food for thought friend. I love my doctor , she respects my decisions even though she doesn’t agree with them. I declined a house visit from her as she said she was worried about me only because she is ” oh poor you, you are suffering so much” she’s lovely but ” poor you” does not serve me. Plenty of doctors out there who will champion you and how empowering to say to your present doctor ” sorry your attitude to my choices does not serve me” 🙂 xx
For me, this process of acceptance comes in lots of different ways. Earlier this year I applied for Personal Independence Payment (a UK disability benefit). I found this a very difficult process, not only because of the practicalities of dealing with the paperwork, but also because of the emotional impact of having to focus on all the ways in which PD and other health issues impact upon my day-to-day functioning, when I generally try to focus on what I am able to do. However I found there was also a positive aspect to the process: it helped me to accept the reality of the limitations I’m living with for the time being; and accepting that reality makes it a bit easier to accept the help I need at present. In other words it’s helped me to accept and love myself a bit more. I’m now receiving the payments and I feel very grateful for the things they enable me to do, such as having my two-weekly osteopathy sessions, using minicabs, ordering take-away meals for family gatherings, etc.
(It’s also worth mentioning, for people here from the UK, that my Parkinson’s UK local adviser was really helpful in giving me information about the application process and advice about what information to include in the answers.)
Thanks for this week’s message, Howard, and love & best wishes to all you lovely people out there around the world.
“I lost interest in Parkinson’s, and a month later it lost interest in me.”
The gig is up. This is it.
Dear Anne-Marie …..Doctors are only there to ease our symptoms and comfort us, but if they are not helping us find the cause of our suffering, they can actually hinder our healing and progress. Please do not hand your life over to anyone else no matter if they think they have all the answers. Keep your dignity and make another choice of physician. Your intuition will guide you to the right one so put your trust in it. I wish you well and stay strong. Lots of love .
Veronica
Thanks Howard. Now I understand better. I think my increase in stiffness & pain can be from a couple of days to more than a month. But I always have faith for recovery.