Hooray for Lance

I love it when grandchildren are able to help out their grandma. Lance helped me with a technical problem today. I couldn’t get my article on progression of symptoms to show up on the front page of my blog, like I envisioned. But he worked his magic. 🙂

BUT… those who have clicked to ‘follow’ my blog, receive my posts in an email… so unless I share the information here, they won’t know to return to the home page. The page title is Transparency

Mht inspirationalv4

Simply Resume

There is a story taken from an episode where Michael J Fox was at a Thanksgiving celebration and an awkward situation arose as his tremors were interfering with his attempt to serve mashed potatoes onto his plate. The hostess finally quips; “Ok, you can have a personal victory later.. right now, we need to eat.”

We need to always find a reason to laugh, rather than have a pity party. We want to view life with optimism. When we fall off the keto wagon and eat a donut… adopt the Dory philosophy, ‘keep on swimming’ or Simply Resume. Besides, optimists are happier & live longer. 🙂

My goal is to provide encouragement, being a spokes person for life..not for the disease. I found some little gems of wisdom (or council):

  • If you have Parkinson’s don’t let pride keep you from asking for help. If it takes a half hour to button your shirt… allow your caregiver the opportunity to take a minute.
  • If you are the caregiver… Ask before you help.
  • As a caregiver, you might ask, “Do you want to talk about this… or just let you know I’m there for you?”
  • When you’ve asked, “How you are doing?” and your Parkie friend says, “I’ve had a rough couple of days…” that means ‘I’m ready to talk about it… don’t gloss it over.’
  • Own the truth.. depression for Parkinson’s may need medical assist. Find someone you can unload emotions on… other than your spouse. (who doesn’t deserve it)
  • What I find encouraging… is when people share their positive experiences.
  • People who survive have a purpose.
  • (Here are a variety of suggestions) * seek for clarity * define your reality * choose joy * don’t focus on yourself * be loving to others * be a role model * to have the peace … give up the need to understand.
  • But you never know when a lay person (or researcher) might come up with a solution.. so don’t roll over and play dead.
  • Be a spokes person for life. Press forward & do what you can.

Our Trials Represent An Opportunity That Won’t Last. Whatever we face in life that seems like a problem or a trial actually represents an opportunity. In this life, we have the opportunity to praise God, and to worship him, in the face of adversity. This takes an act of will, a decision, a certain amount of discipline.

  • If it continues to progress, as the doctors assure me it will, I will fight the good fight of faith with even more joy in my heart. I will not waste the opportunity to show others how to live, fully alive, no matter what is thrown at us.
  • We often reflect… ‘God never said it would be easy… But it will be worth it.’
  •  
  • It Doesn’t Matter. . My continued illness is not an excuse to abandon my faith, it’s an invitation to embrace it. My light and temporary affliction does not matter. Illness is no excuse to abandon faith, it’s an invitation to embrace it.
  • God uses many instruments for healing, and often the instrument is medical science.
  • Sometimes we ask God for an oak tree, and he gives us an acorn. We must steward the acorn.
  • And sometimes we must simply embrace the mystery and accept that we don’t know everything, but affirm that God is still good.

In the movie “Shawshank Redemption”, Andy Dufresne says to his pal Red as they sit in the prison yard, “It comes down to one simple decision. Either get busy living, or get busy dying.”

Each of us is able, today, to offer God the gift of gratitude. Truly, I refuse to waste my Parkinson’s.

I choose to live.

 

 

Procastination – Baby steps

I like this strategy because it nearly makes it impossible to procrastinate. When I look back at all the times I’ve procrastinated, it was always related to getting overwhelmed. When you haven’t even started something, the end result seems a million miles away.

From the blog of Darius Foroux :

“Forming a new habit is hard. I don’t have to tell you that. We all know how difficult it is to live a … healthy life. If it were easy, everybody would do it.”

“We also know that our chance of succeeding is much higher if we start small, right? It’s common sense. “Don’t take on too much in the beginning — you’ll have more reasons to give up.” So goes the advice, which is solid. I’m not going to argue with that.”

“But far too few people actually start small. In fact, I see more people starting big than starting small.”

“Why is that? I think we can get too excited about making a change or doing new things. When we dream about making a change in our lives and start believing in it, the excitement usually takes over. That’s why we end up doing too much too soon.”

“But how can I prevent myself from getting too excited?”

“To be clear, I don’t think excitement is bad. You need energy to make a change. And it’s great to be fired up about achieving something in your life. Always remind yourself that you want to stay fired up. Because when things get hard, we can lose that fire.”

“So when you start forming a habit (writing, working out, reading, eating healthy) or learning a new skill, remember that it should not feel like a challenge. The activity should be easy. If that’s not the case, we all procrastinate — even the most self-disciplined people do that.”

“When you start something new, it’s not about your results. When I started getting daily exercise, I didn’t care what type of exercise. I just wanted to make sure I did it.”

  • Wrote for 4 minutes? Great — you did it.
  • Went for a 20-minute walk? Great — you did it.
  • Read a book for 2 minutes? Great — you did it.

James Clear, the author of Atomic Habits, which is about changing your life by forming small habits, writes about this idea in his new book. I like how he removes all barriers for starting a habit. He writes:

“A new habit should not feel like a challenge. The actions that follow can be challenging, but the first two minutes should be easy. What you want is a “gateway habit” that naturally leads you down a more productive path.”

“Remember, the action itself is not easy. But as James says, the first two minutes should be easy. And what you’ll find is that you can scale down nearly any habit or activity into a two-minute version.”

  • Want to read every day? Read one page.
  • Want to meditate every day? Sit in a meditation position.
  • Want to study for an exam? Open your book.

Bite off too much and “you end up saying, “I give up.” So instead of focusing on the BIG outcome, focus on the SMALL start. Look at what you want to achieve in your life. Then, look at what habits will make that happen.”

“And then what?”

“The goal is not only to get started — it’s to keep going. Nobody wants to read one page a day for the rest of their lives. To me, this strategy is all about getting used to doing something every day.”

“Look, changing your lifestyle is not an easy thing. Let’s say you’ve been living in a certain way for 30 years. What do you expect? That you change overnight? You and I both know that it takes time. So we should change our perspective accordingly.”

“Your first priority should always be to form the habit — something you do regularly. And remember: Habits are not about result. You should only care about what you did today .”

“Life is a competition with yourself — not others. And if you want to win, you must make it easy for yourself.”

 

The Spoon Theory

A recent dialog at “The Invigorated Community” an online group for Parkies or their care givers… the question was posed. “How do you get people to understand the fatigue we experience and why we can’t do everything we used to?”

Mind you, I’m the eternal optomist and believe the therapies I have adopted will give me many years of productive living… but I wanted to share what others have said, to answer the question.

Quote from MJFF “One of Parkinson’s more insidious symptoms is fatigue. This is not your garden variety bone-tired. This is fatigue on a cellular level. Your body is working overtime to accomplish the simplest of tasks: Taking a shower, answering the phone, pouring orange juice. In addition, you may be coping with the combination of possible cognitive problems knows as “Parkinson’s apathy”. These problems include difficulty initiating projects, inability to follow complex instructions, short-term memory loss and difficulty in switching gears midstream.

You can fight Parkinson’s disease apathy by exercising, trying to get regular sleep, taking short naps, and making sure you do not isolate yourself.”

I’d like to share a link from… ButYouDon’tLookSick.com It explains the Spoon Theory… a concept developed by Miserandino and frequently referenced among those with chronic or invisible illness. Many people living with conditions ranging from fibromyalgia to anxiety to depression to parkinsonisms self-identify as “Spoonies” and use the theory to explain their lives to people who may not understand the scope of their illness. (Miserandino’s diagnosis is Lupus)

https://www.youtube.com/watch?v=jn5IBsm49Rk

 

 

On the bright side

So… I have to admit I was disappointed with how our trip to Gainsville went. Basically, the Doctor just wanted to put me on a medication that has bad side effects. When I said, no thank you, he said, “You can just be followed by your primary care doctor.”

So what we did accomplish… They have a base line for my symptoms,,, so If I return in the future, I am in the system. AND he also said, “I would change the diagnosis from Parkinson’s to Parkinsonism.” Because I have multiple symptoms, typical with Parkinson’s, but not the tremors.. plus other symptoms as seen in MSA. There is a test that could be given to determine what parts of the brain are losing the dopamine. But knowing wouldn’t change the treatment. And I don’t desire to have radioactive stuff injected into my veins, anyway.

DaTSCAN is a special technique that provides detailed images of the dopamine neurons (nerve cells) in the brain. The Food and Drug Administration (FDA) approved the use of DaTSCAN for differentiating PD from other conditions in 2011. The patient is given a radioactive agent into a vein.

I asked if I could speak with a dietician, because I am losing too much weight on the Keto Diet, but both dietician’s were in a meeting, so one is supposed to call me. (I’ve made a decision, without her call.) The thinking behind the Keto diet was to get more oil to my brain… and to increase my energy. Sadly, I do not recognize any pick up in my energy level… but when the scale said 107 Lb. this a.m., I decided to add more fruits, beans, etc… to balance my diet more. I’ll still have to say no to products with white flour or sugar, of course. Back to the matra of moderation in all things. I will also continue to focus on the gut health guidelines… Bone Broth, and fermented foods.

The bright side in my day came when I checked the mail. My Aware in Care kit had arrived. I’ll explain what that is, tomorrow.