Tag Archives: #Hello my name is

#Hello, my name is John Sandblom

Welcome to World Alzheimer’s Month #WAM2019.  As we did in 2018, we aim to highlight the voices of our members, and this year, our families. The voices of everyone impacted by dementia matter, and today, we kick off #WAM2019 with co-founder John Sandbloms story of being diagnosed with dementia in 2007.

Johns personal story of being diagnosed with dementia was first published on his website, and is re-published here with permission. You can read his blogs here…

Early (Young) Onset Atypical Alzheimer’s Disease – one person’s story.

John Sandblom, USA

My name is John Sandblom and I am diagnosed with Young Onset Atypical Alzheimer’s Disease. I was first diagnosed at the age of 48 in 2007 with FTD by a gerontologist that specialized in dementia. He was the same physician that diagnosed my father with Alzheimer’s Disease in his early 70’s. My mother had been saying that my father was “losing it” for many years but I never really understood what she meant and if she was just complaining about normal aging issues with my father. I knew that he had made some very ill advised decisions in his late 40’s, 50’s and 60’s but I once again NEVER thought about the possibility of dementia nor did he ever admit that there was anything wrong with his brain or thinking.

My mother passed away from lung cancer and it was at that time we realized my father had some serious problems with thinking. We moved him in to a retirement community apartment and he managed on his own for a few years. He then began exhibiting serious problems with memory and behavior and it was no longer safe to allow him to drive according to his doctor. I was the only child that lived in the same city so I moved him in with me and we took away his car. This was met with extreme anger but we understood it was the disease and the fact that he never admitted or understood what was happening with him.

I suspect that he had effects from the disease as young as I did but he was self employed so when he made bad decisions it led to one business going under and him starting a new one. His bad decisions all make sense to me now because he had been an extremely successful businessman in his earlier years.After a couple of years living with me it was no longer safe to leave him home alone because he had nearly caught the house on fire and had flooded an upstairs bathroom because he forgot he left the water running. We got him placed in what was considered the best memory care unit in the area.

Fast forward to October of 2007. I had been on short term disability from work labeled with depression (I knew I wasn’t depressed but also knew something was wrong so whatever allowed me to be off work was OK) when my wife went against advice from others and called the physician’s office that had diagnosed my father. I went through many scans including a PET scan and neuropsych tests. The physician decided I had FTD. I was put on long term disability and applied for Social Security Disability. After an appeal the Social Security Disability was approved.

My wife and I started going to a support group that is provided by The Alzheimer’s Association, an organization I highly recommend for anyone with any type of dementia and their caregivers.  At this point I took that doctor’s word that I had FTD. After a little over a year I began to ask questions that he didn’t have answers for because I was not progressing as he expected. He became angry with me and I left his office that day thinking no one should EVER be treated that way by a health care provider. I had asked a friend I had made through the FTD Support Forum about getting in to see her doctor at Mayo Clinic in Rochester MN whose name is Dr. Bradley Boeve and is world renown in the dementia field.

He is a cognitive neurologist specializing in dementia which is what I highly encourage anyone that wants to be evaluated to seek out. I got an appointment with Dr Boeve but it would be 5 months before I could make it to Rochester, MN for a week that worked with my wife’s schedule and his schedule. He is the chair of his department and has substantial amounts of his schedule blocked out for research and teaching. He started from scratch and put me through an unbelievable amount of tests assuming nothing. They even repeated my PET scan.

By Thursday of that week he met with me and told me it was medically undeniable that I had a neurodegeneratve brain disease (dementia) but the question was which one? My scans did not match up to anything they normally see as the majority of the damage at that point was in an area described to me like a junction box for all the things the brain does and where executive function is controlled. This explained why I seemed fairly normal but could no longer be successful at work and had problems with things like time management. I could no longer multitask very well at all. But when most of your problems are all about executive function most people think there is nothing wrong with you. In my case I knew something was horribly wrong.

This was never in question for me. In fact, a couple of years before I was ever diagnosed I had an episode that I still can’t really explain but I got scared that I had Alzheimer’s Disease so I told my family doctor that which was met with “don’t be silly, you don’t have Alzheimer’s Disease”. It really wasn’t his fault, most people wouldn’t have had that thought in the first place let alone suggest it to their doctor at age 46. And it highlights a very big problem in healthcare today, training general practice, family practice, psychiatrists and internal medicine doctors on when to refer to a cognitive neurologist for evaluation of early onset dementia. Dr. Boeve told me it is his experience that a patient is usually correct. So if someone tells their doctor that dementia is a fear they should always be evaluated properly.

A while before I went to Mayo Clinic I met a local cognitive neurologist that specialized in dementia and was fairly new to the area.  She seemed like a very good person and a very knowledgeable doctor so I made an appointment with her. She held off doing any tests because she knew Mayo would want to do a lot of their own. Her name is Heike Schmolck, M.D. and I highly recommend her to anyone in Central Iowa who needs a specialist in dementia. After the findings at Mayo she agreed with those and felt like it was most likely that I had atypical FTD.

So I lived with that idea until early November of 2011. My father had passed away from complications from his dementia in the spring of 2010. I immediately contacted NCRAD about donating his brain for research. I was told at the time that I would never gain any knowledge from this donation, that it’s only purpose was for research which I want to support in every way I can so that hopefully my children and grandchildren will not have a chance of the same fate. Dr. Boeve had told me and my local doctor agreed that I had the same thing my father had suffered from and that there most likely is a genetic connection meaning any of my offspring would face a 50/50 chance of getting the disease themselves. In early November of 2011 I received the full autopsy report on my father’s brain. To my shock and the shock of my neurologist it showed he had Alzheimer’s Disease. That led to changing my diagnosis to Early Onset Atypical Alzheimer’s Disease (frontal variant). 

It is very scary for anyone with dementia to think about the distant future. To think about that is to admit what we will be reduced to and how hard it will be on those that love us. So I chose to concentrate on what I can still do to feel useful and feel like I am giving back in some way. I do volunteer work for my local chapter of The Alzheimer’s Association. I have been to the National Forum in Washington D.C. three years in a row (2010,2011 & 2012) to visit with our congressional representatives about issues important to those that suffer from dementia. I feel it is my obligation to do whatever I can while I still can to help all those that suffer and in memory of those that have suffered like my father. I stay very upbeat and not above making a joke about my condition on a regular basis.

I don’t take it lightly but like someone once said, in situations like this you can laugh or cry and I prefer to laugh.

Whether you are new to dementia or this is not a new subject for you, I highly recommend The Alzheimer’s Association for resources in your area and a lot more. When you go to the national website that is linked, you will find in the upper right hand corner there is a place where you can enter your zip code to find out where your nearest chapter is located. These people are always happy to meet with you or talk on the phone and help in any way they can! The association is also the largest private source of research funds for dementia in the world. If you can afford it, please donate to them! I also encourage anyone with dementia to contact NCRAD to see how you can help further research. I donated blood along with donating my father’s brain. 

Are you or someone you know diagnosed with Alzheimer’s or a related disease? Would you like support from others that are  diagnosed? If so direct them to http://www.dementiaallianceinternational.org/membership/  to sign up for FREE membership and many support options.

Hello, my name is Roger Marple

Wow, it is more than half was through the #DAI #Hello my name is World Alzheimer’s Month series! Our members stories have been really well received, and we thank them for sharing them, and especially want to thank you for reading and watching them.  On Day 18 of #WAM2018, we are proud to share the story of one of our Canadian members, Roger Marple. Thank you Roger for taking the time to write it and allowing us to share it here.

Still living well with dementia

Image source: Roger Marple

I was diagnosed with younger onset dementia, more specifically, Alzheimer’s disease in 2015.  I am happy to say I am still living well with dementia in my life.

I find as time as time goes on, seeing thousands of people worldwide still living well with dementia despite any challenges they may experience, gives me hope for continuing to live well with this disease.

Often, I speak about what hope and living well looks like with dementia. I have been accused by people in public media for “sugar coating” this disease. They always make it a point to remind me this is a terminal disease and the inevitable outcome is death. I’ve been accused by people for spreading false hope. To those people I want to say, I do not have an ego so large to think I can beat this disease. To all of those people I acknowledge this disease has a 100% mortality rate. I’m a realist; I know the outcome of this disease.

Now that I have that out of the way I want to share some comments made on twitter from people regarding a discussion about dementia:

Tom Harrington‏ Verified account @cbctom

Tom Harrington Retweeted Roger Marple

My latest follow. A courageous Canadian who’s discussing his experience with #Alzheimers. We need this. Please RT, follow & learn. #ENDAlz

This comment was made by Tom Harrington. Tom is the host of a very popular CBC radio news show in Canada called The World this Hour. I must say I like him and I am enjoying his comments and views on twitter.  Tom is no stranger to dementia in his life. Both of his parents had a form of dementia. I thought it was nice of him to mention me. I agree with Tom, we need more people to understand dementia in our communities.

He was responding to a comment that I had made on Twitter:

@rogerdoger991

Roger Marple Retweeted Sophie Leggett

Alzheimer’s isn’t the end. We all live with this terminal condition called life. Although dementia is different for everyone, it is not uncommon to live well with this disease and enjoy life for some time to come. Something I do every day…

And to Tom’s and my comments another person responded with this:

Replying to @cbctom

But Alzheimers always gets worse once it begins, never better. Don’t give people false hope.

When I read this comment, I wasn’t surprised. In fact I have learnt to expect this.  People have said comments such as this often to me. This person who read Tom’s and my comments only got one thing out of this. Bottom line, things are going to get worse with dementia and there is no hope.

I thought I would do a role reversal with this person’s comment.  Instead of using the word Alzheimer’s in the sentence, let’s insert another terminal condition called life. Now let’s look at this sentence.

But life always gets worse once it begins, never gets better. Don’t give people false hope.

There might be some logic to this comment; eventually things will get worse with this terminal condition called life. Having said that, is that a reason not to have hope living with this terminal condition?

Often I see jokes about Alzheimer’s. I see derogatory comments. This is one of many faces of stigma with dementia.   If you are not sure what I mean by this I encourage you to Google “Alzheimer’s jokes”. You will find hundreds of them not to mention many websites with more jokes on them with dementia/Alzheimer’s.

When I look for jokes about other serious diseases in our society like ALS or cancer, I cannot find any. It is just not okay to joke about these conditions, and usually, if we hear of a joke about this, people are furious at comments made. So I pose the question, why is it fair game for people to make fun of people with a form of dementia? Why can’t people see how fundamentally wrong this is?

What if the role was reversed? What if people with dementia posted thousands of jokes poking fun at your weakest points you may experience living with your terminal condition called life? What if thousands of people shared jokes about you and the challenges you may experience on public media, like Facebook, or in your community? What if you opened a birthday card with a joke about your struggles? Alzheimer’s for example.

Would you feel like crawling under a rock and hiding your challenges from the masses making fun of you and not engaging in life to the fullest, regardless of your challenges? Often this is the case for people living with dementia and our loved ones who live with this disease as much as we do. I see it all the time.

As a person living with dementia, here is a promise I will make to all of you. I promise I will not make fun of any challenges you may have with your terminal condition called life. I will see who you are regardless of any challenges you may have.  I will recognize and support you to live your life to the fullest regardless of challenges you have. I promise to recognize what hope looks like for you living your life to the fullest, with the time you have left, so you can live a good quality life. And most of all, I will respect who you are.

My hope is that someday all of us will recognize people with a terminal diagnosis of dementia, and people with a terminal condition called life, that both groups have the same hopes and dreams. Perhaps with time we can walk in each other’s shoes and have a better understanding for each other. People with dementia want to live a full life for as long as we can — just as we all do. We may have to work a little harder at it that’s all. We are all the same my friends.

I have a philosophy in life. I show my utmost respect to everyone I meet. Would it be too much to ask for the same in return?

By the way, Tom Harrington had a response to this person’s comments about “false hope” with dementia:

Tom Harrington

@cbctom

Replying to: This isn’t false hope. I lost both my parents to it. This is about an act of courage and awareness. It’s the cancer of the 21st century and we need to focus on it more.

Tom made some good points here. He understands the need for greater understanding of dementia. He knows what dementia in his life looks like. There is something to be said about lived experience.  At the end of the day it will be understanding that will eliminate the stigma that we have to endure living with dementia. As far as the courage part? I look forward to the day when courage is not needed when speaking about our journey with dementia.

Last but not least, all who live with dementia in your lives know this. One person by the name of Naquib Mabfouz said “Fear doesn’t prevent death. It prevents life” Please do not let fear from stigma get in the way of living well with dementia.  The problem is with the person perpetuating the stigma, not you. Remember that.

As I said, my name is Roger. I live well with dementia. My hopes and dreams in life have not changed.

Roger Marple © 2018
@rogerdoger991

DAI’s vision is “A World where people with dementia are fully valued and included.”

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Hello, my name is Jennnifer Bute

On day nine of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living well with dementia. Thank you Jennifer for allowing DAI to publish this during September to help us raise awareness of dementia, and the fact that so many people can live positively with it.

Jennifer has represented DAI twice this year, giving presentions at the ADI Alzheimer’s University in London, and the photo we have added here was taken last week. See this tweet thread to read how well her presentation was received.

A Glorious Opportunity

Image source: ADI 2018

Dr Jennifer Bute, Fellow of the Royal College of General Physicians, lives in Somerset in a Dementia friendly village.

Jennifer worked in Africa as a Doctor before working as a GP for 25 years also training medical students and Doctors. She resigned as a GP 12 years ago as she knew things were not right and was diagnosed 9 years ago with Alzheimer’s Dementia. This is her story.

I now know illness can precipitate dementia but I did not realise that in August 2004 when I had a ‘mini stroke’ I lost the use of my left arm and was sent to the TIA clinic. I continued working but began to get seriously lost when visiting patients so I just bought a satnav eventually needing it to find my way to our branch surgery or even to get home.

In January 2005 I had a bizarre episode when I did not know what to do with my shopping in the supermarket and this alarmed me sufficiently to return to my GP who referred me to a neurologist who said there was nothing the matter with me implying  I was attention seeking when I said I did not recognise friends and neighbours . I decided to find more ways to cover up problems and remain safe. Later I had a gas leak check done on our house and the drains checked at work not realising I was having olfactory hallucinations. I could no longer lecture from memory so I started using Power Point Presentations to help.

My defining moment came at the end of 2005 when I was chairing an important Case conference at work, I did not recognise colleagues I had known for 20 years and persisted asking them who they were and why they were there. So in 2006 I agreed to see a 2nd neurologist who was surprised I had had no investigations. The neuropsychology consultant said I did indeed have problems and was not sure I was or would remain safe professionally My patients and high standards were paramount so I resigned. The neurologist said the abnormal results were of no significance.

By January 2008, I developed auditory/visual hallucinations hearing children screaming babies crying and was seen conducting conversations with non-present people I wrote myself detailed instructions on how to make a cup of tea, put washing powder in the washing machine I would have to be reminded to cook meals and might cook supper twice on the same day. One day I did not recognise my husband. I knew I had dementia.

In 2009 the 2nd neurologist was very annoyed I had resigned from work. I could no longer read easily and when the insurance company spoke to me on the phone I thought they were speaking Chinese. I had another neuropsychological assessment and it was such a relief when it was explained I used non verbal and contextual clues to work things out my intelligence enabled me to cover up and was sent to Peter Garrad whom I found on the internet had done work on Iris Murdoch and Harold Wilson so when he told me in 2009 I had Younger Onset Alzheimer’s I was just so relieved.

He started me on Aricept which caused terrible nightmares but we found ways of coping and later Memantine, within 3 months my family were amazed at my improvement I am able to talk (unless tired) most of my hallucinations went. Although they have now returned and often shake my sense of reality However I passionately believe there are ways round problems and we can even reverse some of the decline.

I have started a memory group for folk where I live based on the Japanese model of using the three R’s (Reading Writing and Arithmetic) with amazing results.

The spiritual never dies I have no fear of the future I know exactly what lies ahead.

For me my Dementia is an unexpected gift, a wonderful opportunity and great privilege.

My husband was a great supporter until he died unexpectedly 7 years ago but I have a wonderful family, 3 married children in various parts of the world My networked computer is my back up brain I can’t manage the phone but I can do emails and Facebook as they have visual clues.

My father had dementia so I understand a carers perspective too Where I now live there are many who walk this path and I am always learning and finding new ways to also help others cope.  My son  set up my website gloriousopportunity.org and makes my educative films which are all available there to anyone.

There are no rainbows without rain!

Jennifer Bute © 2018

Please make a donation to DAI, so we can continue to support members like Jennifer.

Hello, my name is Carol Fordyce

On day seven of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Carol for writing your very first blog for DAI for this series to help us raise awareness. You and your husband Brian are an inspiration to us all.

This is me… Getting on with life!

Carol and Brian Fordyce

Hello, my name is Carol and I am aged 61. I was diagnosed with Younger Onset Alzheimer’s Disease in December 2015. 

I had various problems and issues for over twenty years, which began in my mid thirties.

When I received my diagnosis it was therefore not such a dreadful thing, but a huge relief that there was actually a valid reason for what was going on.

I could now understand and deal with this new life. I could seek further help and advice, read up on literature and ask questions to know what this thing is and how to deal with it.

From this moment on I could plan my life around my dementia, and put in place strategies to help me cope with the symptoms. The one amazing thing to come out of this was a personality change, which turned me as a person upside down, and actually made me a better person.

I used to be very shy, quiet and introvert. From a very early age I can remember being painfully shy, I would never speak out at school, make friends or speak out about anything. If I did, I would be ridiculed and laughed at. It was a very difficult time and one I choose to forget.

But now, since my dementia, I am outgoing, make many new friends and speak at conferences, meetings and anything really that comes up. I write poetry, stories and try new things all the time.

This is the new me, and I must say, I love the new me and all that has come with it, other than the dementia of course. But without that I would still be the old me.

I have a wonderful husband, Brian, who is also my carer. He is amazing in all that he does for me. At first, yes we had problems. He would try to do things for me rather than help me to do them. We had a few minor arguments and he eventually asked how I would like him to help. We had a great discussion and things got sorted. Now we make a fantastic pair. I ask for help when I need it and Brian watches me covertly to see if I am struggling. He will often offer his help, other times he just watches and makes sure I am ok and most importantly safe.

Without Brian in my life I dare say I would slide down that slippery slope would not achieve what I do, I would not faster than Sonic the Hedgehog on ice.

So, this is me, with my dementia, and my wonderful husband Brian, getting on with life to the best of our abilities.

We have a great life even with DEMENTIA. You can too.

Carol Fordyce © 2018

Please consider making a donation to DAI, so that DAI can continue to support members like Carol

Hello, my name is Mdm Hui-Mei Su (Amy)

On day three of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our Taiwan members stories of her life living with dementia. Thank you Amy, for allowing us to share it here, and for so actively working with Taiwan and TADA with their incredible work on uman rights for peoplel with dementia and their families, and to foster and empower self advocates in Taiwan.

My second life 

This video is the story of Mdm Hui-Mei Su (Amy in English, although she is also known as Aunty Su in Taiwan), who was diagnosed with younger onset dementia in 2012, at the age of 62. Her supportive husband Mr. Chuan-Der Hsu (Peter) is by her side throughout most of the video.

Amy is a member of DAI, and the very first self advocate in Taiwan. This video briefly shares her story of diagnosis, and how she felt so devastated, she wanted to end her own life; however she did not want to burden her husband, and her daughter also pleaded with her not to. It shows a rare insight into the lived experience of someone diagnosed with dementia in Taiwan, and the transformation from devastation, to one of living a ‘new life’.

Amy is an artist, and although she can no longer paint the style of art prior to her dementia, she still produces beautiful art. She may no longer be able to work out how to use the MRT (train system), and gets lost sometimes on her scooter, and even as trouble cooking now. We hope to feature some of her at our online DAI Art Exhibition later this month, which you can register for now.

She often can no longer remember the names of her friends and many other things, and there are other changes to her abilities, she can still live a very positive life, in spite of the sadness and changes initially brought on by dementia.

In the beginning it was not easy, but she has chosen to become very active, and living positively again; Amy has become as involved as much as she possibly can, through continued art, singing classes, other new learning, gardening, and many other activities. Since April 2017, she has also become an active self advocate in Taiwan.

By focusing on what she can still do, including new learning such as singing a song in English, like almost all self advocates, Amy has been re-empowered to live positively again, and is now speaking publicly, advocating for better services and support for all people with dementia in Taiwan.