These are recent excerpts from FaceBook page of my fellow Person With Dementia (PWD) friend, retired Doctor David Kramer, who is “Living Well with Alzheimer’s”:
Living Well with Alzheimer’s Sept 26, 2014 at 7:31am: Words count. Those of us with Alzheimer’s and related dementias are very sensitive to what is said to and about us. This is understandable. Those of us in the early to mid stages still hear, think, remember, feel and understand. There is even evidence that those in the late stages connect better than previously thought. Hence we take word choice very personally. There is still both a significant stigma and preconceived notions surrounding Alzheimer’s, just as there was years ago with cancer. Just because you forgot where you put your keys yesterday doesn’t mean you are like us or that you understand what we are dealing with. Please don’t say “Don’t you remember …?” Not only don’t I remember, but I am incredibly frustrated that I don’t and that it happens all the time. When you ask me to do two things and I only do one, simply ask me again to do the other. If you are frustrated by needing to remind me, think about how I must feel!”
Most importantly, don’t ignore us because you don’t know what to say. We want to talk, interact, live, laugh, and love. We will forgive mistakes stemming from good intentions and respect your efforts. We are all human. We know we need to educate about dementia and we are working hard to do so.
So yes, words count. And you should choose them wisely. But better to err in your choice than not to choose them at all. Now, share your understanding and … Stay tuned!
Living Well with Alzheimer’s Sept 25, 2014 at 9:45am: For TBT a glimpse of me over 30 years ago during my residency training in the emergency department at Detroit Receiving Hospital. Happy to say that I haven’t changed a bit! Hope you enjoyed the laugh! Stay tuned!
David Kramer Living Well with Alzheimer’s Sept 26, 2014 at 4:45am: No test, or research study for that matter, is perfect. This study might have been improved by looking at beta amyloid PET scans also. PET scans show function in addition to structural changes. Of course, plaques and tangles have been found on autopsy in patients who have had no signs or symptoms of cognitive decline. Thus there is clearly a role for neuropsychological testing for symptomatic patients. Key to this is repeat testing in order to demonstrate progressive decline. The simple fact is that we are still unsure of the anatomy and pathophysiology of Alzheimer’s and many related dementias. Research is ongoing, but a magic bullet still seems like a distant dream.
That’s another reason to also concentrate efforts toward improving the plight of those currently living with dementia! Please join me in those efforts. Neuropsychological Test Beats MRI at Tracking Dementia Diagnosing Dementia alzheimersweekly.com
Living Well with Alzheimer’s shared a link. September 24 · 9:31pm: The brain may perform better on a high fat diet. The Ketogenic Diet as a Treatment Paradigm for Diverse Neurological Disorders [[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321471/]]
Dietary and metabolic therapies have been attempted in a wide variety of neurological diseases, including epilepsy, headache, neurotrauma, Alzheimer disease, Parkinson disease, sleep disorders, brain cancer, autism, pain, and multiple sclerosis. The impetus for using various diets to treat – …
Living Well with Alzheimer’s September 23: Priorities, folks! … It’s all about quality of life; making the most out of every single day. Every one of us has a death sentence. Stop counting the days in your life and start measuring the life in your days!
Tiffany and I took a wonderful walk on the beach this morning. We held hands, talked, smiled, laughed, sang. Life is good. Make the most of it while you can. Now do something that gets your heart pounding your face smiling and … Stay tuned!
Living Well with Alzheimer’s September 21: “Houston, we’ve had a problem.” I’m not talking about Apollo 13. For those of us with Alzheimer’s, it’s an image problem. We don’t LOOK sick. Check out the “before” and “after” Alzheimer’s pictures below. Not Tiffany, me. 🙂 People with dementia often look well. That’s one reason why we have to work so hard to raise awareness! Now, click on “share”, make the most of this beautiful day and … Stay tuned!
Living Well with Alzheimer’s September 18: Yep. Everyone of us with dementia has asked that question! So have our caregivers. Turns out there is no script, no predictable path or sequence. Each of us is a different shade of grey (and there are many more than 50). Every day is one big surprise after another. Tiffany said I was crying in my sleep last night. The good news is I don’t remember it at all. Over breakfast I got east and west confused. Crazy, right? So what! We are getting really good at rolling with the punches. I would love to hit ol’ Alz with a combination that knocks it out but that simply isn’t in the cards.
What is in the cards? An evening listening to The Blu-Tones, maybe a cruise with my BFF (that’s Tiffany, of course), and definitely another beautiful Naples day with a beautiful Naples sunset. Mr. Alz, hit me with your best shot! I dare you. 🙂 Now get out there, enjoy the hand you’re holding, and…Stay tuned!
Living Well with Alzheimer’s September 17: Hugs. Sure they feel good, but they are so much more! Non-verbal communication is huge for everyone. Hugs are actually therapeutic for those of us with dementia, and are probably better for us than the medications we take. I recommend a diet rich in hugs! No one is allergic and there are no side effects. Now get out there, hug someone and … Stay tuned!
Living Well with Alzheimer’s September 16: Focus. One thing at a time. This is so important for those of us with dementia. We have huge trouble with multitasking. If I am asked to do two things, I have to write them down or I will need a reminder to do the second one. Trying to remember multiple tasks involves continued repetition in my head and limits my ability to give my full attention to either one. Tiffany has noted this problem and thus waits until I have completed what I am working on before bringing up anything else. This is why people with dementia have so much difficulty participating in a conversation with more than one person. We try to focus on one person’s comments and then miss others’ points. Very frustrating, but that’s life.
I’m focusing on making the most of today. How about you? Now get out there, have a great day and … Stay tuned!
Living Well with Alzheimer’s September 14: Attitude is key! I’m not saying that Alzheimer’s doesn’t suck. Of course it does. But it is what it is. There is no cure on the horizon. No magic bullet. A medicine that stops Alzheimer’s in its tracks or even slows its progression reliably, significantly and safely is likely light years away. For those of us who are currently patients, there is no point in banging our heads against a brick wall. We can’t afford to kill any more neurons than we already have. 🙂 So we are left with only two options. One is to make the best of a lousy situation and the other is to roll over and play dead. I choose the former. I choose to fly!
The view from here is beautiful! Who is joining me?
No go out, spread your wings and … Stay tuned
Living Well with Alzheimer’s September 12: ”The idea is to DIE YOUNG as late as possible”. I couldn’t have said it better! It’s all about quality of life and maintaining it for as long as possible. I’m not interested in more days. I’m interested in LIVING WELL for more days. This is an elegant way of saying that I’m on the 20 year plan without progression of my Alzheimer’s. Who’s joining me?
Now go kick some dementia butt, have a great day and … Stay tuned!
Living Well with Alzheimer’s September 11: It’s TBT and Abem has been feeling a bit left out. She continues to do well in her training and is getting quite good at “Find mom”, “Find dad” and “Let’s go home.” Abem is a wonderful, loving companion and is well-behaved wherever we take her. What a wonderful dementia dog! … Have a beautiful day and…Stay tuned!
Living Well with Alzheimer’s shared a link. September 7: The genetics of Alzheimer’s is complex. Three minutes is all it takes to see why! The Genetics of Alzheimer’s. This is “The Genetics of Alzheimer’s” by David Shenk on Vimeo, the home for high quality videos and the people who love them. [[ https://vimeo.com/93665478 ]]
Living Well with Alzheimer’s September 6: … what really surprises me is how little support there is for those of us who are living with Alzheimer’s and related dementias. So much is spent on fruitless research for treatment and a cure, while so little is spent on current patients and caregivers. Research is important and certainly has its place, but those living with the disease deserve far more attention, understanding and support than is currently available. I am now officially off my soapbox. Now go out, have a great day and … Stay tuned!
Living Well with Alzheimer’s shared a link. September 6: Take a look at the future with Alzheimer’s. It’s two and a half minutes and worth every second. Warning! It’s not pretty!
Alzheimer’s: An Urgent Epidemic. This is “Alzheimer’s: An Urgent Epidemic” by David Shenk on Vimeo, the home for high quality videos and the people who love them. [[ https://vimeo.com/93665475 ]]
Living Well with Alzheimer’s September 5: Early morning walk on the beach followed by coffee and the newspaper while soaking up the beauty of life. Talk about living well! We love the club we joined. It’s called La Playa (The Beach). Paradise! Enjoy all the beauty that surrounds you and … Stay tuned!
Living Well with Alzheimer’s shared a link. September 3: Definitely worth your three minutes since you are already here anyway. It’s a bit simplistic, but still explains a common progression and average timetable for Alzheimer’s. Interestingly, plaques and tangles are also found in elderly people without symptoms of Alzheimer’s. Kind of throws researchers into the whole “which came first, the chicken (Alzheimer’s) or the egg (plaques and tangles)?” conundrum. This is also why current treatment is lacking and a cure is a long way off. But life, life goes on.
Also, not everyone goes through each phase as described. For example, I plan on waiting 20 years before I progress at all! After all, I’ve got a lot of Living Well with Alzheimer’s still to do. 🙂 You can help by spreading the word and … Stay tuned! [[ http://blog.thealzheimerssite.com/understanding-alzheimers-in-three-minutes/&utm_source=social&utm_medium=alzaware&utm_campaign=understanding-alzheimers-in-three-minutes&utm_term=20140818 ]]
Living Well with Alzheimer’s September 1: A good friend reminded me that “You have to play the hand you’re dealt.” I couldn’t have said it better. Every one of us with dementia has different cards but is trying to play as well as he can. Please try your best to understand and keep us in the game. Now go have a great day and … Stay tuned! “Life may not be the party we hoped for, but while we’re here we should dance.”
Living Well with Alzheimer’s August 31: A huge shout out to all 635 of you for “Liking” this FB page! And extra kudos to those of you who follow it on a regular basis. This page is lots of fun for me and very therapeutic. Your warmth and kindness come through in your “Likes” and comments are very much appreciated! Although I have my low times, I much prefer to dwell on the positives and all of you make it much easier to do so. So, know that you are valued and make a positive impact on our lives.
Oh, one important hint here. Tell your friends about this page and keep in mind that the more often you comment and “Like” our posts, the more likely I am to remember you! 🙂
I’m going to have a great day and hope you do too. Oh crap! I almost forgot; and … Stay tuned! 🙂
Living Well with Alzheimer’s August 30: Looks like Alzheimer’s Best Practices to me! And good advice for everyone. Have a wonderful day and … Stay tuned!
5 Lessons in Life from Dr. Seuss:
- Today you are You, that is truer than true. There is no one alive who is Youer than you.
- Why fit in when you were born to stand out?
- You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.
- Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.
- Today I shall behave as if this is the day I will be remembered.
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