Tips for Getting and Staying Connected

          Here are a few tips for getting and staying connected to enrich your body and your soul plus these can provide a tremendous surge in brain stimulation. First, nurture existing relationships as you cultivate new ones. You have to be a friend to have a friend so schedule time and energy to share with others. Remember, too, that there are many lonely people - become a friend to someone who needs one. You might just offer the magic elixir for good health.

          Schedule time for friends as you schedule private time for yourself. Life is busy - we can get going about 300 MPH and lose track of something very important - our friends. Call, set a time and place, then follow through. And sometimes, after all of those friendly visits, you just need some down time, time to think, reflect, take a walk, write a letter, or curl up with a cozy blanket and a wonderful book.

          As you find more time and energy in your life because of the way you have scheduled time and improved your life with good friends you will find to have time to volunteer. Volunteer to help out to the degree you feel willing and capable. Volunteer where your heart speaks and your soul directs -  at a school, for respite, to assist a friend.

          This next one comes almost automatically if you have followed the guidance of the aforementioned suggestions. Become involved and socialize. Doing something important adds life value and personal spirituality. You can and do make a difference.

          Perhaps one of your new goals (yes, yes, yes) is taking up a bit more physical exercise. Remaining physically active means that the more you do the more capable you become. Perhaps your new friend loves to bike. Maybe your old buddy is into weightlifting. Or maybe you are feeling brave and are ready to launch out into something new and different all on your own. Just do it!

           Empower your brain by taking a class, learning to play an instrument, or immersing yourself in a second language. A little challenge to your mind is a wonderful thing. Although at the outset you may sense some frustration, that's OK. It just means that your brain is filling to capacity with a super new subject or activity. This is good for you and promotes brain growth and mental power.

          No matter what you choose, your brain and your body will love these activities just as you will love yourself more!

Get Your Brain Activated

The following are some tips to keep your brain operating at maximum capacity:

•      Mental flex – keep your hands busy as well as your mind – knit, crochet, paint,   color…
•      Call a friend or family member today and share a happy story with him or her.
•      Tell the world why brain health is important to you and your well-being. 
•      Encourage friends to become involved with keeping a healthy, active brain
•      Enjoy a home-cooked meal - too much eating out is not good for your health
•      Get your body in the game - get rolling in some action
•      Do not be sedentary but rather be up and moving - good for the body and the      soul
•      Complete 3 yoga poses morning and evening plus 3 focused breathing sessions – in through the nose and out through the mouth for 1 minute.

Fully knowing and understanding your family medical history now – to the best of your abilities – will impact not only your health, but the health of most of your family members. You might know your family tree, but now it’s time to learn your family medical history. Schedule time to sit down with your relatives to learn more about the health risks you might face. Write down what you learn and keep a file for your records.

Ouch! That Hurts!!

Ouch! is a video supplied to me by the Alzheimer's Association. In a quick 12 minutes, viewers observe scenarios and listen to conversations that include language that can be hurtful, indiscreet, and just plain wrong. While none of these snippets directly speak to Alzheimer's, they cover a wide range of inappropriate comments that people may make, things like, "You don't have an accent!" (when the speaker appears to be non-white) or "Sally can work overtime - she doesn't have any kids." The film provides optional responses when someone's comment is hurtful.
First, and I often struggle with this, is assume there is only good intent. Sometimes phrases are so common place that the speaker does not even realize the implications. This is your chance to respond with, "Using the word dementia that way makes it sound contagious and frightening. Dementia has so many more aspects."
The second option is ask a question, "Have you ever thought about that saying 'go back to your country' cause mean trauma, fear, and heartache? Many humans who you have grouped together are refugees who have fled brutality and possible execution."
Third choice, interrupt and redirect, "Talking about Joe without him here to intervene is demeaning. Let's wait until the three of us can sit down and talk this out together.:
Make the statement individual, "When you say all employees are bigoted and uneducated, do you include me in that category?"
And finally, when words of explanation escape the brain, there is the option of just replying, "Ouch!" That short word says so much and exemplifies the pain, the humiliation, the trepidation that negative remarks involve.

Vulnerability

Well, a month plus has passed and finally I am returning to this blog. I just completed listening to the audio of Dr. Brene Brown's, The Power of Vulnerability. While I first started it as a sort of "self-help" recommended by my daughter, I have found Brown's to hold so much more. Listening and then re-listening and taking notes, has really opened my eyes to me, my reactions, my ways of thinking and doing, leading to a better understanding of myself and of those around me. The big takeaway (for today, at least) is vulnerability, the vulnerability we feel when deciding to open up a discussion about our own cognitive decline or the decline of someone we love.
We are vulnerable when we toss out a "hot topic" as we quickly thumb through so many possible reactions in our heads: Will the listener be scared? Will the listener have too much advice? Will the listener turn away and run? Will the listener pass judgment and then I will find myself on the fringes of my own problem?
It takes bravery to step forward with honesty and determination. It takes courage to ask someone to pull back on the reins and just listen, not jump in with advice. It takes gumption to speak up about the unknown. It takes a special friend to really hear, ponder, and care.
I have a group called "Let's Talk About It". Although I have been trying to build this group for nearly one year, it is still in the fledgling stages. At times I have several attendees, but primarily it is only me and maybe a casual drop-in. As I have wondered about how to expand this outreach, I realize now how vulnerable people must feel when deciding to open up on a painful topic such as Alzheimer's or other dementia. I must continue to be kind, to exude trust, to let people know of my group, and then to hope I can make a difference and be that special friend that someone needs.

The Longest Day

Today, June 21st, is, of course, the longest day - more sunlight and bright light than any other day of the year in the northern hemisphere. The Alzheimer's Association recognizes that for caregivers and those with Alzheimer's and other dementias, the Longest Day may very well be every day. As these diseases progress, the cognition of the loved one diminishes as the needs expand and grow. What once took just a few minutes, like putting on shoes, for example, can turn into a wrestling match of a half hour. I naturally recommend that you abandon any shoe-putting-on to a very short time. If you are having to force and shove, wedge and push, anxiety will surely increase making the task harder and perhaps even impossible. Resolve that the shoe task is ridiculous and then revert to slippers, simple slip-ons, or bare feet if appropriate. Making life simpler is an excellent way to decrease stress and confusion.
Your community probably has events planned in conjunction with the Alzheimer's Association. These activities fund Alzheimer's research through generous donations from individuals and groups. Contact me to learn more about our Arts and Crafts Extravaganza tomorrow and our Sprint Triathlon July 4th or visit www.adf-winnemucca.com
If a group event is not to your liking, try some random acts of kindness for someone (or someones!) you care about - a walk, lunch out, a shopping spree, an ice cream cone. You can truly light up the life of someone who is isolated, lonely, and in need of personal connection. Caregivers and those receiving care both deserve special recognition and thoughtful gestures.

Do Drug Companies Have an Obligation?

It was recently reported the Pfizer discovered that their drug, Enbrel, an anti-inflammatory used to treat rheumatoid arthritis ,appeared to lower the risk of Alzheimer's disease by 64%. This is a staggering number, especially when you consider that there are over 6 million people in the US diagnosed with this disease and that this number increases every day. With no cure, no prevention, and no reversal drugs currently available, doesn't it seem like a large pharmaceutical would leap at the opportunity to have a powerful effect on the lives of so many?
Instead, Pfizer decided not to release their findings. In fact, as quoted from the Washington Post, "Enbrel could potentially safely prevent, treat, and slow progression of Alzheimer's disease." However, a clinical trial would cost at least $80 million, and so the subject was dropped. It is one thing to decide that the trial was just too expensive; it is quite another to have the research available and refuse to release it, to just stay quiet about this potential miracle.
Does Pfizer have a moral obligation, an ethical responsibility to release their information? With 500,000 new diagnoses of Alzheimer's disease every year it just seems right to share this remarkable discovery with other scientists and drug companies. Perhaps because Enbrel's patent is expiring soon the company did not see the possibilities of profits, even against the capital outlay for clinical trials. I'd guess that they would have reaped billions had they worked to uncover a cure.
Should someone fearing Alzheimer's disease begin taking Enbrel? Currently there is not enough evidence to support beginning this drug regime, however, at the very least, I hope Pfizer will reveal all of their research findings so that a cure for this dreadful disease can be found.

Final Decisions and Hospice Care

Our guest presenter at our last Alzheimer's Support Group, Olyna Hughes, shared many ideas for making end-of-life easier, calmer, less painful, and meeting the requests and desires of the one who is passing away. With discussions in advance, especially during the early stages of Alzheimer's disease and other dementias when cognition is fairly stable and engaged, family members, friends and neighbors, physicians and first responder, can ease one into death without unnecessary drama, arguments, or confusion.
The first step is completing a POLST. This legal document works in every state and takes over for advance directives when the individual is no longer able to make medical decisions. Completed and then signed by a physician, PA, or APN (and sometimes RNs), this hot pink paper cannot be reproduced, is binding, and lasts until the end of life. Have I completed one? No, not yet. My excuse is that I rarely visit a doctor; my promise is to add it right now to my "to do" list right now. (I just did!)
As someone dies from Alzheimer's disease or other dementias, the trail may long, confusing and treacherous as the loved one melts away day by day over what may be many, many years. When this person can no longer speak for him/herself, it is gratifying to know that wishes have already been stated - orally and in writing - which along with the POLST insures that heroic measures such as unnecessary surgery and medications, intubation and other mechanicals, can be halted before they happen for making the end of life better.
Why the concern? When EMTs and emergency room staff are called, their job is to save a life - regardless of the wishes of a life-threatening disease. Once they start, it is difficult to put an end to medical procedures. Then even more heart-wrenching decisions may ensue as a loved determines to stop a breathing machine or other medical apparatus. Being wise in advance is terrific!