Category Archives: #WAM2016

A positive experience with CogSmart, by Wendy Sanchez

Screen Shot 2015-12-13 at 6.18.18 pmThanks to DAI member Wendy Sanchez for her interesting article on her positive experiences with CogSmart, which “stands for Cognitive Symptom Management and Rehabilitation Therapy, a form of cognitive training to help people improve their skills in prospective memory (remembering to do things), attention, learning/memory, and executive functioning (problem-solving, planning, organization, and cognitive flexibility).” As we continue our daily blog series for World Alzheimer’s Month 2016 #WAM2016 #DAM2016, we hope you are finding are mix of personal stories and other topics interesting.

Wendy’s experience of CogSmart…

“A year before a PET scan confirmed I had FTD, I suspected as much due to my episodic symptoms, (behavioral changes, speech problems, lack of balance, memory loss, confusion).

I had seen patients with advanced FTD in my 35 years of work as an RN.

My HMO offered little to no resources to address my concerns. Frustration pushed me to Dr. Google.com. That led me to DAI, an international non-profit peer-to-peer network, actively advocating for human rights for people with dementia. I learned about neuroplasticity and gained the strength/courage to self-advocate.

By my own request I was able to choose a different neurologist and get a PET scan. The new neurologist is young, charismatic, funny, patient, brilliant, and specializes in FTD. He is also a link between the HMO and University of California San Francisco ongoing FTD research.

During the earlier months after diagnosis, I often wished I could access the same rehab programs provided to patients with head trauma or spinal injuries. People with dementia weren’t even eligible for disability (currently at the top of DAI’s advocacy issues/actions – internationally).

Again, through my new self advocacy, I discovered that my new neurologist and his speech pathologist colleague were facilitating a 5 week course through the HMO, open to anyone, called “COGSMART”.

Although most attendees were undiagnosed, we shared a passionate interest in brain health (from the perspective of sub-optimal brain function).

My family care person accompanied me and provided the transportation as we gathered tools for the future together.

The group was set up in an interactive, informal setting – from the get-go. my Neuro MD’s presence dispelled my fears about sharing, we sat in a circle at tables, used a large print syllabus to keep us on track, name tags – we were people not patients. And we were encouraged to ask questions, comment, tell pertinent stories. Each week focused on a different topic and introduced a guest speaker knowledgeable about current research relating to Brain Aging:

Topics included Physical Exercise, End of Life Planning, Sleep Apnea, Depression & other emotional, psychological issues, Nutrition, Meditation, surrendering the driver’s license, Tips for organizing – calendar, keys, self talk, removal of clutter, planning, etc.

Thanks to the suggestions and group support, I began to make small changes in my daily routine. I can notice improvement in all areas whereas previously I would have not even tried to learn or implement new ways.

The “old me” would have said “oh how boring, spontaneity is more fun”. The “new me” realizes that the old ways are no longer an option I want to entertain. The tools give me back an important sense of having some control – vis a vis choices.”

By DAI member, Wendy Sanchez

Remember me, by Mick Carmody

Remember Me

By Mick Carmody #DAM2016 #WAM2016

Remember me I am the one who used to be here
I am the one who you spoke to without fear
I am the one who you listen to but do not hear what I say
Remember me I am the one you used to love now for which I pray

Why don’t you call, why don’t you talk
You avoid me when you see me when you walk
This cruel disease robbed us of love and friendship that we used to share
Back then you used to care

Remember me because I am still here
I am told that you do no longer know what say
Simply start with, hello, is what I hope and pray
Remember me please remember me

Thank you Mick Carmody for sharing this wonderful poem, and for the story below for our continuing series of blogs for World Alzheimer’s Month 2016, themed ‘Remember me’.

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“Remember me my old friend, before I was diagnosed we were so close, sharing everything in our lives as one. We were as close back then.

You know we used to share everything just like good friends should do. We no longer go on picnics with our families and kids, or do you all go and not include me.

All my old workmates avoid me at all cost, now that they know what caused my strange behavior and that I could not remember anything I had or had not done.

Now my phone, my car and my life all sit idle because nobody remembers me. Out of sight, out of mind is what hurts me the most.

I look at my mobile phone contact list which says two hundred and fifty three in total of I call just three. That is my mother, my wife and me.

I have been diagnosed with a type of dementia which affects the two frontal lobes in my brain. I can still talk, walk, run, play and have fun.

Remember, I am still here I am still me. I am still the same person as you knew back then. The way I act and speak are still the same. My brain is the one that is causing the problems, you see I   have an incurable disease, there is no cure, something is eating away at my brain but hopefully it will be years before I am affected so much that I cannot walk and talk.

I may knock things over and drop other things to numerous to name but I can still hold a conversation with all of the guys who used to come around without notice, because you all are considered part of my family.

You avoid me when you can, I presume that is because you are scared about what to say in case I dribble or say something that may embarrass you.

Even if you did have to speak to me I would imagine that you would be looking around to make sure that none of our friends saw you and your face would be blood red.

Back then I believed that we all cared about one another and for one another, how wrong was I?

There is one thing that you don’t see and that is that I AM STILL HERE I AM STILL ME.

I am told you do not know what to say, how about starting with HELLO.

REMEMBER ME, REMEMBER ME “

By Mick Carmody, Copyright 2016                                                                                

“Living well with dementia”, by Jeanne Lee

Just love me, by Jeanne Lee
Just love me, by Jeanne Lee

We continue to share members stories and other topics related to dementia for World Alzheimer’s Month 2016 #WAM2016 DAM2016, and it is wonderful to hear from some of our members who have lived for more than 20 years with dementia.

We thank Jeanne Lee, one of the original members of Dementia Advocacy and Support Network International (DASNI), whose leadership DAI has followed, for sharing her story with us today.

In spite of the changes in cognition and health, many have lived and continue to live much better with dementia than the public perception of how it is of life with dementia; they have thrived with and beside dementia, and chosen not only to die from it.

This is Jeanne’s story…

“Living well with dementia”

By Jeanne Lee

“This is a story of a mother of five plus their partners, grandmother of 13 and great grand mother of 4. A wonderful best friend and partner and many friends and family. That’s me and I count my blessings many times everyday even with the diagnosis of Alzheimer’s and with many symptoms of PPA.

I am writing this to wake up the world to our cause to be respected for who we are and what our diagnosis says on a piece of paper or on a computer. Too many years doctors’, scientists’,speakers’,and everyone who thinks they know everything about what WE live.

When will the big money for speaches be spent on thee experts who live 24-7 with it surrounding their every moment. When will every organization having to do with Dementia be required to have these experts on Boards which are deciding our lives. Deciding to put all money into the cure that is years away instead of taking care of us now. How many of us can afford to get to an International Conference which Is All About Us. For gods sake who belongs there.

I am one of the few still fighting after 21 years diagnosis. I survived attempted suicide, 3 years being put in mental institutions for depression, writing a very successful book; Just Love Me. My Life Turned Upsidedown by Alzheimer’s. I also was a member of 9 national and international Alzheimer’s groups on the Boards of 3 and traveled the world on my soapbox.

Wake up world all; we want is Respect.

I had a note from a sister in dementia “What Would a Day All About You Be Like”

To make this short I just completed a six week Vacation all about me. My Family made it all possible and I truly wish all these Buddha Moments for every person touched with or by dementia. A special mahalo to Vern my partner in care and best friend for wanting me to have this treatment and love.”

Copyright: Jeanne L Lee

“The day my dream sank” by Michael Ellenbogen

Screen Shot 2016-09-04 at 6.30.27 AMMichael Ellebogen is a member of DAI, and has been a long time global advocate for change. He has shared his story of living with dementia with us  here, including the frustrations of living with cognitive disabilities. Thank you Michael for allowing us into your inner world for this series of daily posts for World Alzheimer’s Month/Dementia Awareness Month 2016 #WAM2016 #DAM2016….. This is his story.

“My name is Michael Ellenbogen. I am a writer, husband, and father. In 2008, at age 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was always very successful in being able to accomplish anything I set my mind on doing. This diagnosis has changed my life in many ways.

When I finally received my diagnosis, of Alzheimer’s, it was a relief to have an answer that explained the symptoms I was experiencing. I had heard of Alzheimer’s disease, but I really did not know what it was until I did more research. When I learned there was not a cure for Alzheimer’s I was shocked, and I was no longer thankful for the diagnosis that answered so many of my questions.

Alzheimer’s disease has impacted so many aspects of my life like my career as a high level manager, but I was surprised by how it has impacted my hobbies. Not that I had many. I used to love boating and tinkering with electronics but I can no longer do either of these things. Electronics are not forgiving, and if I make a mistake the projects can go poooofff when I touch the wrong component. This has happened.

I have tried to take up new hobbies such as golf, but learning new things is difficult. I could not keep track of the ball. It took me much longer to tee off then others, and I felt too much pressure when I was slowing down the people behind me. I would love to play golf but at my own speed and without all the pressure.

I became increasingly frustrated. Not because I have Alzheimer’s, but because of the disparity and stigma surrounding this disease.

Let me explain. Everywhere I turn, I hear or see something related to cancer and HIV. The government contributes 18.7% of the NIH research budget to cancer, 9.9% to HIV, and Alzheimer’s receives only 1.5%. This leaves me with one question. Why? There are so many more people living with Alzheimer’s than HIV, yet we receive so much less funding.”

And here is Michael’s story his frustrations with how dementia has impacted his ability to enjoy boating, one of the loves of his life…

The Day My Dream Sank

“I have been a very lucky person. I have had the opportunity to own 5 boats in my life time. The last boat I had was sold because my wife and I had no time to use it because of our jobs. That was about 17 years ago. I really did not have the time again due to our work schedules.

Then came my diagnosis of Alzheimer’s disease (AD) in 2009 at age 49, after struggling to get a diagnosis for 10 years. Because of that I was forced to retire. That thought never left my mind and I kept looking at a boat but I had the fear that I would decline in another year or two and would no longer be able to control a boat.

I once had great skills and could easily control a twin-engine boat and move it sideways into any position I wanted. That requires lot of knowledge and multitasking. I was fairly sure I would not be able to do that anymore because of my AD. Over the years I kept looking at a boat every chance I could and I just had this dream to buy another but I was so afraid of the added limitations that have been placed on me. Then I realized that the two years were now 4 to 6 years and while I did decline it was not as bad as I thought it would be. I guess I am also lucky there, if one could look at this dam disease.

So I decided to look for a used boat. While I found many, I was always afraid to buy them because of the possible repairs needed. That is another problem. I once was able to do most of the work on the engines and keep the boat well maintained. I am no longer capable of doing it for reasons I cannot even explain. I don’t even wash and maintain my car, which was always sparkling clean. Something in me had changed; something that would make me look lazy if you did not know I have AD. I just don’t do things anymore. So as you can see this would create many other issues, but I figured I was going to finally live out my dream. I used to say we were the poor boaters because we had to do all of the work, while many had their boats well maintained and they just came down to enjoy them. That would add a lot to the cost but I knew this was my last opportunity if I was going to do this.

I have been able to find ways to make up for my inabilities. I was even looking for a boat that had what is called a bow thruster. That would allow me to have more control to make up for my loss of skills. This looking went on for years, and I finally came to the conclusion that I would look at a new boat to insure all of the issues would be handled under warranty.

As I tested new boats I found that the high-end boats had technology installed that would make up for my lost skills, and I was so relieved that I now felt very comfortable and all of the issues were now being addressed. But what was great with this new boat is it had a joystick feature. This option allows a novice to look like a professional. It’s almost like playing a game. Whichever way you move the joystick the boat does it all automatically. That is no easy task when you know what is involved. I find the new boats totally amazing. I also now had the confidence that I also knew in my mind that my wife would be able to step in if needed.

I set my sights on 2016 Regal 35 Sport Coupe. After some negotiations I was having very high anxiety and fear of what I would consider the unknown. I was very surprised that my wife was even okay with making such a purchase. When it comes to deals I always got some of the best deals. With all of these issues and lack of commitment it is like being on a roller coaster. One minute I wanted it so bad and then came so many fears and I was unsure of the ones I did not know of. One of my problems is that I can no longer see all of the issues at once but can only think about one at a time.

I finally told the sales guy of the issues and did not go through with the deal. He said if he could resolve all the issues I could take a test ride to see if I would feel comfortable being behind the wheel. They finally came back with such a great offer that I could not refuse. As we had to put things in writing I realized many of the things that made me feel comfortable were not being put in writing. Things that were said were not the same. All this was creating even more anxiety for me. It does not take much to do that but all this started the roller coaster effect and feeling sick to my stomach at times, but I really wanted this boat, so I continued thinking we would overcome all this.

I also realized I was not being as sharp as I use to because I could not keep track of all of these issues and needed my wife to do it who just kept letting them getting away with each of these issues. I was also wondering what I did not know that I did not pick up on. I figured we could work this out by the final signing as I had made my request.

In the meant time we started purchasing many items for the boat as it is like buying a new home in some ways and you need a lot of things. I had forgotten all that. I had made a list of items needed and went into the store to buy them. I came out spending a lot of money and bought many things. Then I realized most of the items on the list were not even purchased. That just created more concerns of my inabilities to get things done right and my wife was not helping as much as I was counting on. I had forgotten how expensive all this was. It was not the money but trying to keep track of all of these things. I just figured I would get over it but seeing them all pile up on my floor was starting to become a bit overwhelming and added to the already existing anxiety.

The night before the sea trail I had trouble sleeping. I had so much anxiety and fear. I even felt like I was going to have a heart attack as I was getting pain in my chest. I finally told my wife and she said we were not going to get the boat. I was so relived and prepared to do that.

But then we saw the boat again at our sea trail and it was such a great looking boat that I had decided to move forward with the deal and take the risk. I kept telling myself it would get better once it was over and I pushed on.

When the captain came on board he started to explain how I needed to do certain thing in sequence otherwise I could do damage to the boat’s electronics. Here is a person who the day before had trouble using the remote for the TV. All of this makes me really question my abilities. Then there were the markers on the water I needed to follow. I was a bit confused and concerned about doing the same as the captain when I was on my own. It did not help that most of the water in the area was low of 3.6 feet at mid tide.

There were some issues with the boat but think they could have been resolved. But then again there were various markers that were being pointed out to me that I would need to remember later so I could navigate safely. In my mind I was wondering how I could possibly do that when I have so much difficulty remembering. Then as I looked around me on the open water I became panicky and scared as I just felt so overwhelmed that I was trying to hang on to a dream that I was no longer capable of doing. As much as I loved this boat and it was the best boat I had ever had for just one week. I had to finally come to the realization that my AD has made it impossible for me to do this safely.

I had such difficulty making decisions throughout all this time, and I believe my old self would have never even allowed me to spend so much money, but all of my executive functions seem to be a mess. I think the lesson to be learned here is that we must learn to simplify our lives, but that is easier said than done because I still want my boat. I realized deep down it has to be this way but it does not make it easier.

It’s times like this when I really hate this dam disease. It has taken away all of my hobbies. So I guess that last boat did not count since I only kind of owned it for a week. This is just so hard for me to accept.”

Michael’s book From The Corner Office to Alzheimer’s is available here.

 

“Driving and dementia: My experiences” by James McKillop MBE

Screen Shot 2016-09-04 at 8.01.33 AMAs we continue with our series of daily posts here for World Alzheimer’s Month 2016 Dementia Awareness Month 2016 #DAM2016 #WAM2016, the issue of Driving and Dementia remains a difficult one for everyone! Those of us with dementia want to keep driving; often those who love us or are in the car with us want us to stop driving as to them, we have become unsafe!

As people with dementia discuss this topic globally, it is clear each country has its own rules and regulations around driving and dementia, and it is a confusing issue. Doctors also dislike bringing this topic up, as it can mean a patient will stop seeing them about their other health issues; governments cannot afford to provide us with alternative and affordable transport, so many of them almost ignore the issue as well.

Member of DAI, and pioneer advocate from Scotland, Dr James McKillop., DUni. MBE, recently produced this booklet with the support of the Life Changes Trust in the UK to support others with dementia facing the loss of a drivers license, and has granted us permission to share it here. Thank you James.

Driving and Dementia: My Experiences

By Dr James McKillop MBE

This is an excerpt from his book:

“No longer allowed to drive

It is a bitter blow losing your licence and you have no idea just how crippling it is, until it happens to you. Your mobility is turned upside down. Your freedom to get up and go at a moment’s notice is gone. You lose your independence. You may have to rely on others to get about.

You feel a nuisance if you ask and are reluctant to bother busy people. You may feel infantilised, taken about like a toddler. Some places are off bus routes and the beaten track and you can no longer travel there, unless someone has the time to take you. It can be humiliating and demoralising.”

Copyright: James McKillop

You may also be interested in this article published in the Australian Journal of Dementia Care by one of DAI’s co-founders, Dementia and the impact of not driving_AJDC_KateSwaffer

DAI also hosted a webinar on Driving and Dementia earlier this year,  where Associate Professor Vicki Traynor, an academic from the University of Wollongong shared a Driving self assessment tool with us, which you can view below or download her slides here.

Driving and Dementia, by Associate Professor Victoria Traynor

 

Dementia is not designed for the weak of heart

Screen Shot 2015-05-17 at 12.45.42 pmThis is part our continuing series of daily posts for World Alzheimer’s Month/Dementia Awareness Month 2016 #WAM2016 #DAM2016.

DAI founding member and Board member, Amy Shives shared her story on My Dementia Story Facebook page some time ago, and has given us permission to publish it here.

Living with dementia, which is what all members of DAI and beyond who are sitting in our “cognitive wheelchairs” have no choice about; it is often a daily grind, with challenges most people would never even imagine unless we tell you.

Thank you Amy for this insightful, honest and truly heartfelt piece. Here is her story…

Dementia is not designed for the weak of heart

By Amy Shives, M Ed.

“The very essence of who I am in the world and how I behave has changed so much that I have lost myself. Without my lifelong friends to mirror back for me the ways we look at life and adjust to it, I have fallen and I can’t get up.

Following literally years of chasing what my various personal problems were caused by, major life changes that I did not sign up for were to occur thus changing the trajectory of my life.

Dementia is not designed for weak of heart . It literally will change who you are. This occurs as a result of secondary issues happening after the long sought after diagnosis. This change for me personally resulted in a new way that I respond to events in my life that were well established prior to dementia.

Some may doubt that these changes a person is challenged with change the essence of the person. With what my life including my relationships has done to my inner core, I believe for me is has.

Dementia has so very many layers of change and adapting to those changes that I often feel as if I have a tornado in my head.

In my case, this tornado has stirred up my very being. Memory problems being the least of my challenges.

Relationships I have had, some over forty years long, have evolved for me rather suddenly and without my consent. As relationships wax and wain over time most of these changes are expected or at the very least understood for people living their lives. As I endeavor to confront the inevitable evolution of mine, I find I am ill equipped to do so.

I have two girlfriends from college. These two women and I were roommates some forty years ago. I now find that their behaviors, and the two women’s behaviors couldn’t be more different, at best annoy me. All of the time. By definition a friendship lasting so many years has gone through stages one would expect, good and bad. My new and unexpected feeling for my friends is at best neutral. I would describe it as a feeling one would have about an acquaintance . I no longer feel any bond with them at all. Their behaviors as persons that is their essence annoy me. I am frequently angry at them for not behaving as I expect. Frankly they could just go away.

Truthfully they have disappointed me a great deal in their support for my disease process. Being college educated women they could have easily read about the vary basic information surrounding the disease. They have not read much, if anything. This fact would have hurt me in the past but I would have quickly worked it through and forgotten it or rationalized the hurt.

My two best friends are now insignificant to me. These people that I have been through a lifetime of maneuvering our way through life, have become acquaintances that I could take or leave depending on my mood.

The very essence of who I am in the world and how I behave has changed so much that I have lost myself.

Without my lifelong friends to mirror back for me the ways we look at life and adjust to it, I have fallen and I can’t get up.”