Tag Archives: John Sandblom

#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.

Webinar “DAI: 5 years on”

 

Please note: this is one event, set in a number of different time zones.


“Five years on: Why DAI? Where have we been? Where are we going?”

 

ABOUT THE WEBINAR: With a new diagnosis of dementia every 3 seconds, it is not surprising that DAI has continued to grow since its launch five years ago. Our presenters, John Sandblom and Kate Swaffer are both co founders, and are also co hosts of peer to peer support groups and very active board members. They are both often asked why and how DAI was set up. In this Webinar, they will cover the history of DAI, provide an overview of what DAI has achieved to date, and discuss where they see the future of DAI.

The most imporant part of DAI’s work is the weekly peer to peer support groups for members, and the global advocacy for claiming our human rights and disability rights. This webinar will also be an opportuntity for members, families, as well as our sponsors, supporters, academics and professionals working in the field to tell us what they would like to see in terms of DAI’s future direction.

By working together collaboratively, we are all stronger, and can achieve even more than what the original founding members first dreamed of. We welcome everyone to register and join us for this EXCITING Webinar. Without you all, DAI would not be where it is today.

PRESENTERS: Kate Swaffer & John Sandblom

John and Kate are co founders of DAI, and have been active board members from day one of this organization. They were also very in the setting up of DAI prior to the launch on January 1, 2014.

John has lived in central Iowa, in the US for all of his life except for college which was eastern Iowa at the University of Iowa. He spent the majority of his working life in business-to- business sales, first print advertising followed by television advertising and then telecommunications sales. He was diagnosed with Younger Onset Atypical Alzheimer’s Disease at the age of 48 in 2007, by a gerontologist that specialized in dementia.

Kate grew up on a farm in rural South Australia, and has lived in Adelaide Australia since 1977. She commenced her professional career as a nurse, specialising in dementia and aged care, and then worked in operating theatres. She has also worked as a chef, and also in health care sales. She is very active globally for DAI, has published two books on dementia, two poetry books, and is involved in research into dementia at three universities. Kate was diagnosed with younger onset dementia (svPPA) aged 49 by a neurologist in Adelaide.

Register here…

DATES/TIMES:

Wednesday, January 30, 2019 (USA/CA/UK/EU)

10:30 am Honolulu
12:30 pm Oregon Portland/San Francisco USA
12:30 pm Vancouver CA
2:30 pm Des Moines/Chicago USA
3:30 pm New York USA
3:30 pm Toronto CA
8:30 pm London/Glasgow UK
9:30 pm Paris, Munich, Amsterdam, EU

Thursday, January 31, 2019 (AU/NZ/JP/SGP/TWN/CHN)

7:00 am Adelaide AU
6:30 am Brisbane AU
7:30 am Sydney/Melbourne/Canberra/Tasmania AU
4:30 am Perth AU/Taipei TWN/Beijing
5:30 am Tokyo, JP
9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Apologies for some of the early or late times; it is really difficult to host one event which suits all time zones; we will record this presentation for those who are unable to attend.

Check your time if not listed above by opening this link.

We hope to see you there!

DONATIONS ARE OUR ONLY SOURCE OF REGULAR REVENUE, AND E INVITE YOU TO MAKE A DONATION.  

WITHOUT DONATIONS, DAI COULD NOT PROVIDE THE SERVICES WE PROVIDE CURRENTLY FOR MEMBERS, THEIR FAMILIES & THE GLOBAL COMMUNITY.

  • $US 5.00 covers the average cost of one of our monthly bank fees
  • $US 60.00 covers the average of the cost of our monthly Zoom subscription fee
  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 400.00 covers the current cost of 3 months of website management fees

PLEASE DONATE HERE… 

CERTIFICATES OF ATTENDANCE: If you are still waiting on a certificate of attendance from any of our educational webinars, please email us at [email protected]

OPTION: Our event ticketer, Eventbrite, charges us a transaction fee to cover fees and other processing costs, to securely process your donation. Please consider adding an additional small amount to your donation so 100% of your donation amount goes to Dementia Alliance International.

Thank you.

ADI2016 Budapest: an introduction

1This year, a number of DAI members have had the great privilege and honour to attend the Alzheimer’s Disease International 2016 Conference held the last few days in Budapest. As Chair, CEO and co-founder, as well as now an official ADI Board member, it has been a very busy week, and  none has had time to write a blog about it.

I’m hoping our pictures on Facebook have helped you feel vaguely connected. Most have been added to individual members pages, as I forgot to add many to our own Facebook page!

On the day before the conference, history was made for the second time. The first time we made history was when I was invited to Geneva to present at the WHO First Ministerial Conference on Dementia, and placed Human Rights and Disability Rights on the global agenda last year in March, demanding access to the United Nations Conventions of the Rights of Persons with Disabilities.

This started a global campaign, and with the help and expertise of DAI member Professor Peter Mittler, a report was written by Neil Crowther, on behalf of DAI and ADI. It was submitted to the ADI Council members (the country Alzheimer’s Associations/Societies) on Wednesday, and it was unanimously accepted, and agreed that the campaign for the human rights of people with dementia will be continued, hence o ur second historical moment.

DAI co-founder and current Treasurer, John Sandblom represented us well by giving the Inaugural Richard Taylor Memorial Lecture, which of course, brought may of us to tears. It is though, wonderful to know that Richard’s legacy will live on, and we will also have the first Richard Taylor Advocates Award, to be announced on World Alzheimer’s Day in September of this year. Information regarding this will be sent to our members and supporters very soon.

Until we have time to edit and add the videos and presentations notes from the many speeches given by people with dementia, who by the way, were in every session, the best speakers by far (no bias at all here, as many delegates have said this)…

As soon as I get home to Adelaide, I will make every effort to write a review of the conference, but for now, I have added a photo collage of photographs below.

Those of us who attended, worked very hard to ensure we represented as many voices as humanly possible, and worked very hard trying to do so. As the photographs will show you, we also had a lot of fun!

ADI2016 photo collage

Best wishes,

Kate Swaffer

John Sandblom presents as ADI2015

Slide01Co-founder and current Treasurer of Dementia Alliance International, and past co-chair (2014), John Sandblom presented on behalf of our membership at ADI2015 in Perth recently.

The presentation presented by John Sandblom titled Finding Our Voice was accepted for oral presentation was written by John, and co-chairs Janet Pitts and Kate Swaffer,  was well received, and very timely. John has given us permission to add the slides and notes from his speech, although unfortunately, no-one managed to record it, so we cannot upload a video of it. Thanks John, you did an excellent professional job or representing our members and organisation.

Abstract:

This presentation will review the first year of a global advocacy and support group, of, by and for people with dementia called Dementia Alliance International. Our vision, “A world where a person with dementia continues to be fully valued” is being realised, as more people with dementia connect around the world, and speak up for their basic human rights. We speak up for full inclusion and a place at the international dementia table; as people with dementia we believe that without full inclusion at the conversations about the very things that affect our lives and futures is imperative. The stigma, discrimination, prejudice, myths of dementia and isolation are simply being exacerbated, by the organisatons or researchers purporting to improve our lives or advocate for us, without us. We will discuss the technology being used to support our work, allowing us to progress rapidly as an organisation with no funding, and with representation from a number of countries. We will also review the Master Classes run during Dementia Awareness Month 2014, and the value of the sharing of the lived experience of dementia. Finally, we will discuss how collaboration has been the key to our success, as well as allowing us to support the work of other people with dementia in individual countries such as the Scottish, European, Australian, Irish and Japanese Dementia Working Groups, rather than work against each other or in isolation. In its first year, DAI has become the peak advocacy body, supported by ADI, of by and for people with dementia.

Presentation slides and notes:

Slides: Finding Our Voice_John Sandblom_ADI2015

Notes: John’s personal introduction including diagnosis and current position with Dementia Alliance International and including his role as a founding member.

Please note: The content of this presentation and our website represents our opinions (however well-informed they may or may not be) and should NOT to be considered medical advice, it is not medical advice. Medical advice should only be obtained during conversations with your own medical doctor.

DAI started as a dream by many people with dementia, all of the founding members having varying versions of that dream, but it was driven by the desire for change, and the desire to increase awareness, education and most importantly, connecting with others people living with dementia all over the world. It is about people with dementia finding their voice, and being fully included.

Our vision is “A world where a person with dementia continue to be fully valued.”

Through empowering members to work on projects, speak out, and get involved in support groups, we believe the value of improving the quality of life for people with dementia is tremendous, and often life altering. Even when people are no longer employed, they can still be meaningfully involved and contribute to society.

People with dementia have an indescribable instant bond, perhaps because we are at great ease with one another, but mostly because you know the other person knows what it is to live with dementia, not questions necessary. Many people doing advocacy work on their own have now joined to work together with other DAI members.

What we can’t do alone, we can do together.

Through strong advocacy, we have collaborated with ADI, and are now the peak body globally representing people with dementia. Whilst we are an advocacy and support group, of, by and for people with dementia, with no ongoing funding, and some voluntary administration and other support, we still need to work towards finding regular funding, and finding volunteers willing to support our work.

All organisations require funding and manpower support, and Dementia Alliance International is no different.

We speak up for full inclusion and a place at every international dementia table… Nothing about is without us.

In finding our voices, we are continuing with the mission of DASNI and The Scottish Dementia Working Group, whose mantra was NOTHING ABOUT US WITHOUT US: Full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination and isolation.

Like everyone else, we make mistakes and we may not be able to function at the same level as people without dementia, however that is no reason to no include us. We need to be allowed to fail, just like everyone else.

By not including us, the stigma, discrimination, prejudice, myths of dementia and isolation are being exacerbated by the organisations, researchers and service providers purporting to improve our lives or advocate for us.

NOTHING ABOUT US WITHOUT US will ultimately mean full inclusion will help to improve the lives of people with dementia, and reduce stigma, discrimination, isolation and other negative experiences of dementia.

What we do:

  • Website, weekly blog, newsletters
  • Weekly online support groups
  • Advocacy and speaking roles
  • Master Classes
  • Monthly Webinars: A Meeting of the Minds

Supported by technology:

  • Zoom platform for online
    • Board meetings
    • Events
    • Educational webinars
    • Master Classes
    • Weekly support groups

Collaboration is the key to our continuing success.

DAI is a global voice

  • We advocated for a person with dementia to become a member of the World Dementia Council
  • A member was invited to present at the World Health Organisations first Ministerial Conference on Dementia in March

Living better with dementia… It is possible.

But the attitudes of, and support from researchers and health care professionals need to change on this.

The language of dementia also needs to change to language we find empowering, enabling and respectful. Please see Alzheimer’s Australia updated language guidelines – https://fightdementia.org.au/sites/default/files/language%20guidelines.pdf

“People will forget what you said; people will forget what you did… But people will never forget how you made them feel.” (Mayo Angelou)

“People will forget what you said; people will forget what you did…
But people will never forget how you made them feel.” (Margaret Meade)

 

Membership of DAI

  • Membership of Dementia Alliance International is exclusive to people with dementia; click on the GREEN icon on our website
  • Family carers, professional service providers, researchers and health care professionals are welcome to join our newsletter mailing list, and support us through donations, click on the BLUE or BLACK icons

www.infodai.org/membership/

@DementiaAllianc

www.facebook.com/DementiaAllianceInternational

[email protected]

You can all sign up to receive our weekly blogs when they are published by clicking on the BLUE button on the left had side of the website.

Thank you.