I have heard from a number of people lately that they are receiving pressure from family, friends, and/or neurologists to begin taking medications or increase the number of medications or the dosages of medications, and it is beautifully packaged as “the medications will improve the quality of your life.” I would imagine that none of us want somebody outside of us telling us how do define “the quality of our life.” So why are you considering doing something you decided in your heart you do not want to do as a result of somebody else telling you it will improve the quality of your life?
Here is an excerpt from a post I did three years ago on May 10, 2010, eight months into doing the Recipe:
“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.”
Unless they are respectful of the choices you have made in how to treat your Parkinson’s, family, friends, and neurologists ONLY look at numbered paragraphs 1, 2, and 3. Their conclusion: Howard had a terrible quality of life.
I look at the paragraph at the end:
“Having a positive attitude is the key to everything.” Even with paragraphs 1, 2, and 3, I kept a positive attitude. This is a glorious quality of life.
“My mind and body have accepted the pain, so I am not consumed by it every waking moment.” I had learned that acceptance mitigated pain. This is a glorious quality of life.
“Deciding every day that Fighting Parkinson’s drug free is a fight worth fighting is what keeps me going.” I learned that my my faith in my recovery was stronger than other people’s opinions of what I should be doing about my Parkinson’s. This is a glorious quality of life.
“Quite frankly, getting to spend time with Sally and the children to celebrate Mother’s Day yesterday is really what keeps me going.” I learned that the people in my life, and my own life, were so much more important that Parkinson’s symptoms. This is a glorious quality of life.
What you may find hard to believe is that one month later, on June 12, 2010, I was fully recovered. Had I let other people decide what I needed to do to improve the quality of my life — those who were just staring at my symptoms and telling Sally and me that I needed to come to my senses and take the medications, and that clearly what I was doing was not working — had I listened to them…we would not be having this discussion. How sad for all of us.
If you want to improve the quality of your life, believe in yourself above all, and know in your heart and soul that you, and only you, should decide what are the factors that determine your quality of life. I learned a lot of things in my recovery, and being with my Higher Power in each moment helped me have so much faith in my recovery that the other people’s opinions of what I should be doing about my Parkinson’s became inconsequential, and the symptoms became inconsequential as well.
And through this, I learned compassion, for myself and for others. I was not upset with anybody who was offering me their opinion of what I should be doing. In their mind, they were trying to help me. So, I had compassion for them as I knew when I did not do what they wanted, they suffered a little.
Here is another view of what is the quality of your life. It is entitled, “Your state of Peace & Joy is the Quality of your Life:”
In the end, the quality of your life is a choice. In the end, you must take responsibility for the choices you make. In the end, you are the one who lives with the consequences of your choices. Doesn’t it make sense, then, that you should be be the one to define the quality of your life?
If you still are on the fence because you have this uncontrollable compulsion to “make the other people happy even to your own detriment,” then before you do what they want, go to Google and type in the name of the medication followed by the words side effects. Read a few reputable website’s explanations of the side effects of what is being recommended to you, and ask yourself this question: “When I am experiencing all of these side effects, will I have improved the quality of my life?”
The quality of your life is a choice. Why not make it YOUR CHOICE!
You are worth it!!!
All my best,
Wonderful Howard…….Thank you again for the unending and timely advice and support.
Oh my goodness, Howard! You have been in my head this week! My neurologist always talks about quality-of-life when he’s trying to push pills. i have to admit lately that I have been tempted. So instead of giving in,I went to a website on side effects for Sinemet. After reading them, I decided to print them out and put them on my mirror so I would remember that they are not the kind of quality of life I choose. Thank you so much for your timely message. You are the best!
Great idea, Teri.
When I decided to fight pd drug free, I was already on Sinemet – scared, a slave to the pill schedule, increasing in what my neuro said were symptoms but actually side effects, and decreasing mental clarity. I was blessed to have my husbands support as I began to withdraw from the meds, but there were a bunch of people who argued against it. Really drove me nuts until I realized that they were just presenting out of their own fear, sometimes having more to do with their own lives than with what I was doing with mine. Howard, this is a great post and I really liked the message in the video. As always, thank you for all you do, and especially for giving us all the venue to stand together
people get stuck in rigid mindsets
Thank you Howard! I was looking for that video earlier this week! I too needed reminding of who chooses the quality of my life. I have a Neuro checkup next week and a few well meaning friends keep suggesting I listen to med options. As much as I do my best to live in the moment, I find myself worrying because I dislike conflict which includes telling my Neurologist and friends “no meds, thank you”.
If it isn’t too much trouble could you please add that video to the survival guide.
Great site. Just found it. Im 52. Three yrs ago they said I got P. I know they dont know what it is. I dont take the meds.
Thank you brother Howard. Just great to hear your inspirational messages. I too believe quality of life is so important it’s everything I love life because of this and know I can be healed I am healing every day in ways that I don’t know but feel I am progressing as a human being bit by bit. Whereas if I had mess I feel I would stagnate and feel down. So thank god for all of you believers n Howard Marie n the other lady forgot her name who have recovered xxxxxxx
After almost 5 years of living with Parkinson’s drug free, I finally succumbed to meds because I chose a better quality of life. I wanted to still dance. I had a fairly good run with Sinemet and Azilect. Over a period of 6 months I had a number of improvements on Azilect. After 5 years on Sinemet CR the formula in Canada changed. A supplier of one of the ingredients changed. The binding agent changed; they were no longer effective as controlled release if broken in two. The distribution company’s contract was completed after 10 years, which should have made no difference to the drug.
For me the new gray/purple sinemet CR caused nothing but problems. My comments to my neurologist weren’t really heard initially, but after 6 months 1 out of every 6 people who came there (Parkinson’s Research Centre) was unhappy. The Research Centre’s correspondence to Merck (the manufacturer) went unanswered. How irresponsible is that?
Thank goodness I met Howard within 8 months of all this happening. I felt like I was being held hostage by a drug company who, quite frankly, didn’t give a damn about my wellbeing or the effect their drug had on a number of people.
It feels good to now be on a med reduction path. I have reduced my meds by two thirds and I no longer take the CR. I think of myself as a drug addict and I shall be so happy when I am totally drug free.
Back to the topic – others may urge you to take meds to improve your quality of life. And yes, they may be right, it may improve it temporarily but at what cost? You couldn’t pay me enough to get back on that treadmill. I don’t believe there is one drug out there that will improve PD on a permanent basis. In fact I would venture to say, most of them eventually increase symptoms.
Your friends and family, well meaning as they may be in encouraging you to take meds, are not living with Parkinson’s. You are.
It’s not their choice but yours – choose wisely.
Thanks for the comments and sharing
Thank you Lynn for your comment. My symptoms, while relatively minor, make riding and sometimes just caring for my horse problematic. It’s my horsey-friends who encourage me to take meds, my non horsey friends don’t think I need them. I have been tempted to try meds since I so miss how effortless riding use to be and there are days it just isn’t safe for me to bring my horse in from the field let alone groom him (today being one of those days). I am grateful for my husband who picks up the barn chores when I can’t! Your thoughts helped steel my resolve! I have faith that riding will once again be effortless when I’m cured! Thanks to you and of course Howard!
Hi Howard and others
For the pas 2,5 years I have been seeing my neurologist every six months. Three weeks ago, she suggested to come back in a year. To her I looked great and my symptoms hadn’t become worse. I have never taken any medication and have been following Howards recipe for about 1,5 years. I don’t know how long it is going to take me, but I have accepted being a turtoise for now, and guess what: I see so many more beautiful things than ever before. It has been a conscious decision. I know others mean well, but it is my live and my body. This is how I choose to live. Hang in there everybody! Our time will come.
I’ve been away for a week and am enjoying the heart, determination and the loving support I see in all these messages, not to mention the wisdom. Thank you, Howard (the video really resonates!)…thank you all. I am very much enjoying the companionship I experience through all your postings.
With love and gratitude
i’m so thankful for all the postings….started the 30-day challenge on my own after finding this website about 2 wks. ago….if i hadn’t read others’ input, i would have been terrified when my symptoms worsened…but now i know to expect that and that means it is working….have been on simenet almost 2 yrs and am working to get off….hallelujah!…thank-you, howard, and all of you for your invaluable input….