11.29.17 Perfect Peyton Pictures Portray Productivity Plunders

Well, I hope Monday’s post was motivation for you because it was a swing and a miss for me. Turns out, I spent almost the entire month flying by the seat of my pants. My whole “schedule it for after Thanksgiving” plan worked until Monday when I woke up and realized I hadn’t written anything down.

Photo Credit: Tracy Cox

My feelings exactly. All day, literally ALL DAY, was wasted trying to get my email to sync to my calendar. Do you remember how pretty it was Monday? How perfect it would have been to spend the day outside with our sweet puppy? UGHHHHH! Kenneth had to drag me away from the computer because I refused to give in – Battle of the strongest wills.

Spent most of the day Tuesday getting the calendar to sync to my phone. Y’all my anxiety was through the roof, terrified that I was supposed to be somewhere or something wasn’t getting done. I’m a planner, I like having my schedule laid out so nothing gets overlooked, so not having it on the calendar meant it was all in my head ready to erupt. Anxiety overload. I stopped working so that I could live life and here I am glued to my computer.

Moral of this story: I’m the brat that has a yahoo email and was determined to use outlook. Next time, I will outsource this task to a higher power. Please don’t tell me how to do it now, I’m chalking this up as a win. All is right in my calendar world, and if you’ve given me dates to save for any reason please resend them!

Putting on pants and venturing out into the real world today. Story time at the library with the Princess Penny and her Mama, girls lunch date with my Toni, LOTS of errands and book club. Making up for being glued to the computer and loving on two of my favorite Mommies to be.

I’m going to have to learn to prioritize my schedule, and clearly it’s going to take everything I have to do it. Still working on the “Sunny Do” list, hope to have it out for you to start holding me accountable early next week. Maybe that’ll be one of the items: spend more time away from the computer/phone than with them. I’ve always had my schedule dictated by something else – work, extracurricular activities, appointments, etc. – and now it’s all me setting the pace.

Ready, set, go! Change is hard but my head is harder, my perfect email and calendar synchronization are proof of that.

11.28.17 Help Me Help You

How to Help Your Friends When They Ask to Help You

   Dagmar MunnBY DAGMAR MUNN

How to Help Your Friends When They Ask to Help You

ALS is not only a confusing disease for those of us who have it, but it also throws our well-meaning friends into a tizzy. Friends who truly want to show their love and support are stymied as to what to do, how to act or what to bring.

That’s because we’ve been guided by our past experiences with other, more common, ailments. For example, when a friend is home sick with a cold, we bring soup. Or for someone recovering from surgery, we send cards and flowers. If they are in hospice care, then we know it’s time to say our goodbyes.

But announce to the world that you have ALS and most folks are completely baffled about what is expected of them. Heck, at the time, I didn’t even know how to answer their question, “What can I do to help?”

I remember those first few months. I received cards, flowers and, yes, even offers of soup! Don’t get me wrong; all of that certainly was welcome, and the soup was very tasty!

What is the answer?

Over the past few years, there have been studies looking at what contributes to quality of life for ALS patients, as well as what diminishes it. These studies found that feeling hopeful and having positive coping strategies improves overall well-being. What reduced quality of life? Feeling isolated, having little social interaction with others and losing the sense of meaning for one’s life.

If I could go back in time, here’s what I would tell my friends when they asked that famous question, “What can I do to help?”

  • Encourage me to keep participating, interacting and socializing with normal activities. Offer to pick me up, walk in with me and sit next to me. Provide the moral support I need at this vulnerable time.
  • Brainstorm with me for ways I can remain active in our group of friends while accommodating the changes in my physical abilities and my energy level.
  • If I begin to avoid going out or am home-bound, keep me in the loop through emails filled with photos or videos. Keep in contact via FaceTime, Skype or other video-chat channels.
  • Try to keep our relationship as normal as possible. Pull me out of dwelling on my illness by sharing funny stories or discussing our common interests and current events.
  • I may walk a little slower now, have speech issues, and not eat the same foods as before, but don’t let that prevent me from attending special events and enjoying the company of others.
  • And, finally, keep my caregiver (spouse) in mind. If my care is intensifying, offer to run errands, mail a package or pick up a take-out meal. Or maybe give the gift of time by offering to visit with me so he or she can get out and have some “me time” as well.

But all this help is a two-way street, so I promise to:

  • Be open to your invitations. I may not feel emotionally up to it initially, but I’ll go along anyway. I know that showing up and being among friends is the best thing to lift my mood and outlook.
  • Let you know when I need help and I will accept it when offered.
  • Be honest with you about my energy levels. I will discuss it openly and let you know when I need calm and rest, or when I’m able to join in and have fun together.

Let’s be the change. Let’s raise awareness of ALS. Let’s help friends and family learn what they can do to help maintain the quality of our lives.

Because, we CAN thrive with a little help from our friends!

***

Originally posted: https://alsnewstoday.com/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/ 

11.27.17 Wake Up, Sunny!

Here we go, time to get up and get focused on the agenda. Last few days before round 3 of radicava ridiculousness begins, before christmas chaos starts, and time to add purpose back into the routine.

I’m excited to share with you my “Sunny Do” list. Part of this transition has been to purposely focus on my marriage, my home, myself, and my plan for this next chapter. We learned from the 30 by 30 list that the plan has to be fluid and evolving. We also learned that the most insane blessings come when you least expect i‎t.

Kenneth and I have discussed, prayed, and laughed about the insane items God has placed on our hearts as priorities for this transition. Cannonball’n right out of our comfort zone, trusting God’s perfect timing and provisions for our life, and loving and learning from each and every person he brings into our lives.

I’m excited for the opportunity and to see what’s in store. I’ll get the list up soon!

Happy Monday!

I’m Thankful for People Like You!

this. this is amazing.

The Official Blog of The ALS Association

By Stephen Winthrop

If you ever run into me, you’ll notice that I am wearing a button that says, “I have ALS. Ask me about it.” I love this button because of the conversations it creates with people who want to learn more about ALS and my own journey. Now, I’d like to have an important conversation with you.

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11.24.17 Puppy Dreams

This is one of my favorite pics of our sweet boy. He will be 17 months, no shame in my game, in december and is very much so still all puppy. He plays hard and snuggles harder than anyone I’ve ever met. It’s full body contact or none at all, there is no in between.

Im not sure if he’s going through a growth spurt or just playing harder during the day, but this sweet pup is a dream machine every time he sleeps. I‎t started as twitching but is now full blown running in his sleep, with whimpers, snorts, and growling – it’s hysterical! Whatever he’s after better look out, Baloo Bear is going to get’cha.

What do you think puppies dream about? According to this article:

“What we’ve basically found is that dogs dream doggy things,” Coren said. “So, pointers will point at dream birds, and Dobermans will chase dream burglars. The dream pattern in dogs seems to be very similar to the dream pattern in humans.”

For unknown reasons, the size of the dog may determine the size of the dream. Smaller dogs have more frequent but shorter dream periods, Cohen said, while large dogs have less frequent but longer dreams.”

Makes complete sense, guess Baloo is dreaming about catching his brother Ian.

Interesting fun fact from the same article:

Dog sleep is similar to human sleep in other ways. Dogs probably have nightmares, just as humans do, Cohen said. They can also get narcolepsy, a disorder that causes the brain to fall into sudden sleep. In fact, research into a line of narcoleptic dogs at Stanford University unraveled the biochemistry behind the human form of the condition

I wish I️ could ask Baloo what he’s dreaming about while he’s running in his sleep, hogging the bed and covers and snuggled as close to me as physically possible. Maybe one day.

As a side note: We are extremely proud of his progress in training. He really is doing a great job.

11.22.17 Port Party Part Deux

Yesterday was more along the lines of the aforementioned port-a-potty rather than a port party but I’m hoping we’re in the clear now.

turns out, in true Sunny fashion, the tubing to my port was kinked and that was the source of the issues during infusion. also, in true Sunny fashion, I drove myself to this appointment assuming nothing major was going to take place and spent 2 hours waiting to come down off the local anesthetic because my legs were shaking uncontrollably. Don’t worry, they fed me pizza.

  • so they accessed me
  • took a chest x-ray
  • sliced open my incision
  • pulled out tubing
  • shortened i‎t
  • plugged i‎t back in
  • sewed me back up
  • accessed with one inch
  • great blood return

As my father in love would say, badabig badaboom. I️ have until December 1st before i‎t gets poked again for round 3 so plenty of time to heal up.

<<
xt issue of concern is tegaderm. Minor skin reaction but just like everything else, we’ll cross that bridge when we get there.

11.21.17 Planning Ahead, Always

End-of-life Care Important in Neurodegenerative Diseases But Can Be Lacking, Study Finds

NOVEMBER 16, 2017 BY IQRA MUMAL IN NEWS.

Patients with neurodegenerative diseases have views that are framed by the context of their lives, and end-of-life care should be equally personalized, respectful and given in a timely way, researchers in a study report.

The study, “The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis,” was published in the journal Aging & Mental Health.

With patients living longer, end-of-life care (EOLC) is becoming a significant healthcare priority. Palliative care is a major part of EOLC, helping to improve quality of life for patients and their families by addressing a patient’s psychological, spiritual, and physical needs as health declines.

Research has shown that palliative care can be of benefit to people to chronic diseases. But such care is generally reserved for cancer patients, and less often recommended for those with neurodegenerative diseases like amyotrophic lateral sclerosis (ALS).

For this reason, researchers at Lancaster University set out to evaluate views expressed by people with neurodegenerative diseases regarding palliative and EOLC.

Using four different electronic databases, they selected 13 articles, then evaluated the studies and interpreted the findings. Views covered included patients with Huntington’s disease, motor neuron disease, multiple sclerosis, dementia, and Parkinson’s disease.

Results showed four areas or themes in EOLC of importance.

First, patients significantly valued autonomy and control. They wanted an active role in decisions surrounding their healthcare. Despite variability in individual wishes, participants made it clear that they wanted their views respected.

Second, patients want to be able to make an informed decision about their healthcare, with knowledge of all pertinent facts. Many felt that there were given inadequate information about their care, limiting their ability to make fully informed decisions. This area of concern also extended to the role of healthcare practitioners and the importance of trust between a patient and a healthcare provider.

Third, patients were concerned about contextual factors in decision-making. As an example, family is very important when it comes to making decisions, and members can heavily influence a patient’s choices. Other key contextual factors included social groups, disease progression, and feelings of hope.

The fourth theme concerned pitfalls of care, with many patients complaining of being given inadequate or even deeming care, and care that can often be difficult to access. “And now I get pats on the cheek or, worst of all, on the head, like a child. So I hate it. That patronizes compassion. So far from compassion and empathy,” one patient in a study reported.

“Participants’ views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care,” the researchers concluded. “Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.”

Death is never a topic of enjoyable conversation, but something that has to be addressed when you have a terminal disease. My Type A, need for control self is thankful for the opportunity to be involved in my end of life care. It’s not my favorite thing to plan but it’s on the to do list.