Spent most of the day in the Emergency Room with Mom #EndALZ

Please subscribe to my new blog and get email updates when I post new blog entries at http://www.ALZandDementia.com. I will stop posting here soon!

Today started like any other Sunday. We did wake up a little later than normal, but otherwise, it was a normal Sunday morning.

Yesterday, Mom was having some difficulty with following commands (please don’t take this term the wrong way)! ie. please lift this leg up and put in the car, pick up the fork and eat the food on it, etc. Mom did not eat much yesterday at lunch and dinner, but I think she had enough food to maintain a healthy balance.

Back to today!

We went to our favorite family restaurant for breakfast (Red Star Diner). We know everyone by name there and they are so awesome with our family. This is probably the 4th or 5th time that we had to have an ambulance called, while we were there for breakfast.

We met up with some family friends for breakfast (John and Chris). Chris is a nurse practitioner and was with us for breakfast.

Mom ordered her usual breakfast (Strawberry and Bananas on French Toast with whip cream). She also had a side of bacon. Mom ate pretty well this morning. She normally does really well with breakfast.

After breakfast, we were sitting there talking and mom started to fall asleep at the table. I had my dad go out and get the car and bring it up to the door. I tried to get mom to stand up so we could leave. She kept saying yes, but did not get up. She was falling in and out of sleep. She also was not able to execute on basic commands. When I said stand up she said yes, but did not know what to do.

Our friend Chris tried as well to wake her up and get her moving too.

Mom basically collapsed in her chair and became completely non-responsive. Her hands became cold, sweaty and calmy. She started to shake and vomited. She still was non-responsive and physically and mentally out cold.

We called 911 and they were there shortly to assist and take her to Toledo Hospital. The restaurant staff was great and help with every request. Several of the customers also stepped up to help. I feel bad for the other customers in there having breakfast; it’s not always easy to enjoy your meal and time with friend and family during a medical emergency. I am so happy that the staff at Red Star Diner care so much and they are like family for us. They care and you can see it!

Dad rode in the ambulance with mom to the hospital. I ran home to get Mom’s ID and medical card. Our friends ran to the house while they were caring for Mom to get her prescription list (the one we had, was out of date by a few weeks).

When I arrived at the hospital, they were caring for Mom and getting her stable. They ran several tests and could not find anything wrong. This is one of the most frustrating things. I know something was seriously wrong and they are not able to diagnose with anything specific that made sense.

I also made sure to inform everyone that walked in to see her that she was in late stage alzheimer’s and would not understand why she was there and how to describe what happened. I also ensured they understood that she needed extra care and patience.

The entire staff at the hospital was great to work with. They released Mom about 4 hours later to go home.

On our way out, Mom had to go to the bathroom. I told the nurse that she needed full assistance in the bathroom to ensure that she had the help she needed.

As I was walking by the next ER room, a lady stepped out of that room and commented on my Alzheimer’s shirt! I wear purple every day. I had the one on today that says “The End of Alzheimer’s Starts with Me”. She said that she was there with her Mom and her Mom has Alzheimer’s. How crazy is that? Two rooms right next to each other in the ER and both are there for the same reason! (Alzheimer’s). Her Mom goes to the same day center that my Mom goes to. They probably talk to each other every day in the day center! Thankfully, neither of them will remember this horrible day!

Her Mom wandered and was found by a jogger. I referenced my friend Alex and the work he is doing with Dog Rescue for missing persons with Alzheimer’s; she know who I was talking about.

I talked to her about adding a home alarm to the house (we did this for Mom). This will help with peace of mind when sleeping. I also recommended that they get a bed alarm and chair alarm to notify when she get ups and wanders (we did this for Mom too). It’s amazing that we crossed paths and that conversation led to sharing personal experiences with dealing with this disease. I shared my contact information and she is going to reach out to me for information on some of the tools, that I referenced.

Mom is home resting now! We are just taking it easy today! Thanks for listening!

We have to fight to end this horrible disease!

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Posted in Alzheimer's, Caregiver, caregiving, Dementia, Family, fundraising, Memory Loss | 2 Comments

Alzheimer’s new TV commercial – Two Paths – Missed the mark!! #EndALZ

Please subscribe to my new blog and get email updates when I post new blog entries at http://www.ALZandDementia.com. I will stop posting here soon!

I’m writing this message to encourage the National Alzheimer’s Association to go back and do some editing to their new commercial. This seems like a pat on the back commercial for the National Association. We have to do better than this! I hope they have not wasted money on running this ad. It totally missed the mark!

A message from Michael Ellenbogen: (with his permission)

“The Alzheimer Association almost hit a home run with this commercial. Almost! They finally made it clear to the public that you die from this disease and then ruin it with the claim “We cure Alzheimer’s Disease”. I wish they did because I am living with the disease and I need the cure. Instead they try to make themselves look good at the expense of those suffering with the disease and their families.”

http://www.youtube.com/watch?v=wqK1NEpNBic

Additional thoughts from me on this message:
This ad missed the mark on messaging! When people not familiar with this disease hear this ad, they may not catch the true message. When the Alzheimer’s Association said “We cure Alzheimer’s” someone not familiar with this disease may think that the Alzheimer’s Association cured the disease and not heard the real message. (Especially with all the fireworks!)

I also think that there is no real call to action. i.e. Text to donate! They also do not reference their social channels (Facebook, Twitter, LinkedIn, etc.). They also do not reference the hashtag #EndALZ! (They also do not really use their social channels which is also a huge disappointment)

It seems like we have no consistent message around Alzheimer’s! It seems to change often. We have “Open, Voice, Move” and #EndALZ and now ”The brains behind saving yours”. – I think this last one belongs to the scientists, not the Alzheimer’s Association.

Please contact the Alzheimer’s Association and ask them to edit this ad to ensure viewers have a clear understanding of the message.

How to contact the Association:

24/7 Helpline
Contact us for information, referral and support.
tel: 1.800.272.3900
tdd: 1.866.403.3073
e-mail: info@alz.org

National office
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
tel: 312.335.8700
tdd: 312.335.5886
fax: 1.866.699.1246

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Today is Cancer Survivors Day – A blog for a new friend about a very rare & deadly cancer called mesothelioma

Please subscribe to my new blog and get email updates when I post new blog entries at http://www.ALZandDementia.com. I will stop posting here soon!

Recently, Cameron reached out to me to share his story about his wife and family; he shared their battle with a very rare and deadly from of cancer called mesothelioma. I was touched by the video and story! Please take a few minutes to review this video and hear their story. I know my passion is all about Alzheimer’s, but we all need to learn about other diseases and what others are going through. It’s not always about us and our cause.

My only request is that every needs to pick a cause and fight for it! We can’t sit on the sidelines and do nothing! We need to step up and fight for something with meaning! Someday, I will be able to write about someone winning the fight against Alzheimer’s, but today I’m celebrating another fight to survive! My grandma died of breast cancer and I have many friends that are fighting various forms of cancer too. We are in the fight of our life for my Mom and her battle with Alzheimer’s! Today, let’s celebrate this victory in the fight to survive!

“My name is Cameron Von St. James and I was thrown into the role of caregiver when my wife, Heather was diagnosed with a very rare and deadly cancer called mesothelioma, just three months after the birth of our only child.  We were initially told that she could have less than 15 months to live, but she was able to defy the odds and eventually beat the cancer.  During her treatment, I had to learn quickly to be an effective caregiver, and there were many times when I became overwhelmed and beaten down by the role, but we managed to fight through it together.  We recently participated in a short video about my wife’s cancer experience, which we hope to use to raise awareness and support for people fighting illness, and the caregivers who fight alongside them. Here is the link to the video:  http://can.cr/heather

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My Passion for Alzheimer’s and moving blog to www.ALZandDementia.com

Thank you so much! I am very humbled to know that so many people have stopped by to read my blog, comment and share your story. I have been writing more lately and plan to blog at least once a week.

I’m also humbled at all the people that follow me on twitter (and I follow back), engage with me, message me, listen to me, share with me, retweet content, ask for advice, share advice and care about Alzheimer’s disease.

I do have a day job (nothing to do with Alzheimer’s) and I spend several hours a night reading, learning, listening and sharing what I learn and experience. (I pre-schedule most of my tweets – I’m really not on Twitter all day and night) 🙂 I don’t do this for money, I have a career for my income! I do this out of love and respect for my Mom. I also assist my father with caregiving. For fun, I bowl, play volleyball, travel and spend time with family and friends.

My Mom is in the late stages of Alzheimer’s! She was diagnosed four years ago! I moved back to Michigan two years ago to help my Dad with caregiving. I continue to live with them today and help! I have a great job, work virtually, choose to live with my parents and help with caregiving.

I try to respond to everyone that follows me, mentions me, messages me, comments, retweets, etc. I take pride in the fact that I do respond to everyone (I may have missed a few, but I’m not perfect) – Most organizations/individuals do not even respond (they only self promote themselves with one-way communication or don’t communicate at all)!

It’s hard to believe that my blog has had thousands of views. I would have never thought anyone would have read what I have been writing. I have been using my blog and Twitter handle @ALZandDementa as social/virtual therapy for dealing with my Mom having Alzheimer’s. This is my support group! You are part of it and have made a huge difference in my life. THANK YOU! I have made so many wonderful connections online. I have had the opportunity to meet some of my online connections in real life and by phone.

My new website is up and running at http://www.ALZandDementia.com. I’m still working on adding some features to finish building it out. I hope you will join me there and continue to read, comment and share your story.

Please follow me on Twitter at @ALZandDementia; I have tweeted nearly 6,000 tweets, I’m following around 1,500 and have around 1,200 followers. I have heard from so many followers via Direct Message that do not want to reply publicly, showing support! I also get a handful that think that I’m too direct or don’t agree! I have had 1,000s of interactions with followers on Twitter.

You can connect with me on Twitter at https://twitter.com/ALZandDementia

My blog/tweets are sometimes very direct, showing my disappointment in advocacy, awareness, social media, government funding for research, etc. I am a very direct communicator and speak my mind. I have passion for Alzheimer’s and my Mom’s life depends on my passion and advocacy. I know that the odds of anything happening in her lifetime, is not realistic. I will fight hard for this cause and will not sugarcoat my feelings or disappointments. Also, when my Mom has a bad day, the stress level may drive me to be more direct and pointed with my comments/posts/etc. I sometimes go on rants, but that’s my passion for the end goal that we all have (a cure and/or treatment for Alzheimer’s)! I say what many want to say, but don’t! I’m sorry if that has come off the wrong way to some.

If you work in an organization and support Alzheimer’s; I would hope that you have the same passion that I have. You may not communicate as direct as me, but you need to have passion. You need to raise awareness and continue to educate others around this disease.

When reading my tweets, please do not read tone into them. I’m writing my thoughts in 140 characters or less. Also, 99% of my tweets are educational, informative, raising awareness, advocacy and positive. I will post some that are not! If your Mom was dying with this disease, you would have similar passion. Some of my Tweets towards the National Alzheimer’s Association and other organizations are educational (trying to share best practices with social media, mobile, etc.) and to motivate them to use social media. They may appear as negative/attacks; this has never my intention. My intention was and will be to raise awareness.

Thanks for taking the time to read this!

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Wow! Response to my conversation with a group of 7th & 8th graders

I have moved my blog to http://www.ALZandDementia.com! Thanks for visiting this blog!

Just received an envelope from New Bedford Academy! All of the 7th & 8th graders that I talked with last week about my job and Alzheimer’s, wrote me individual thank you letters!

I just spent an hour reading all of them! What an awesome gesture and an amazing way to start the holiday weekend!

Several referenced their own personal family connection with this disease and other diseases; they also referenced their personal volunteering and support for charitable causes!
Pretty cool that our youth and future leaders are already paying it forward, doing great things and supporting amazing causes!

 

20130524-181324.jpg

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Please ready this Blog: Alzheimer’s Association – Why are we not talking on social media? #EndALZ

Why are we not talking on social media? (We are failing as a collective group – The National Alzheimer’s Association, 15.4 million caregivers, 5.2 million with Alzheimer’s, the millions that lost someone to this disease and the millions that know someone that has this disease or has had this disease) – We need to step up now and make Alzheimer’s a national conversation. We need to get our politicians talking about it and get our news media talking about it.

What should the National Alzheimer’s Association Do?

  • Create a national Social Media command center and staff it with the right resources
  • Invest money into social media/mobile and reduce print media
  • Make website mobile friendly
  • Create an App for smart phones that works for the Walk, Advocacy and information
  • The National Alzheimer’s Association should share at least three things a day on Facebook and engage with following.
  • The National Alzheimer’s Association should share at least 10 things a day on Twitter and engage with following.
  • The National Alzheimer’s Association should share content and engage with following on all social media (i.e. Facebook, Twitter, LinkedIn, Pinterest, Google+, YouTube, etc.)
  • The National Alzheimer’s Association should also use paid advertising on social media to grow following and raise awareness.
  • The National Alzheimer’s Association should also use images with limited text to get message out.
  • The National Alzheimer’s Association should also use video to get the message out.

Big Numbers:

  • 320 million people living in the United States.
  • 5.2 million in the United States with Alzheimer’s Disease
  • 15.4 million caregivers in the United States

If you look at our news media, we get very little coverage. This is not a disease that people are talking about. We need to do more and we need to do more now. We need to get a younger voice talking about this disease. We also need to make it sexy to talk about. Cancer is sexy to talk about, but Alzheimer’s is not!

Prefect example of a media bias for other diseases:

“Angelina Jolie will have ovaries removed to lower chances of cancer” http://www.toledonewsnow.com

(I don’t remember this much coverage when Glen Campbell was diagnosed with an actual disease, called Alzheimer’s)

Lets dig in a little deeper into the numbers!

We have 15.2 million caregivers and 5.2 million with Alzheimer’s disease in the US! Why do we only have 365,000 likes on the National Alzheimer’s Association on Facebook and 23,500 followers on the National Alzheimer’s Association on Twitter? Shouldn’t we have 15-30 million following the National Alzheimer’s Association on Twitter and 20-30 million Facebook likes for the National Alzheimer’s Association?

If you think the National Alzheimer’s numbers are great, I would love to hear from you. If you think we are missing the mark on how the National Alzheimer’s Association is using social media – Please call them/email them and tell them that they need to do more. I have been telling them for a year that they need to do more, but I’m not seeing enough progress.

The only way we will get them to do more is to call them and email them. We all need to do this every day. We have to make sure they hear us. If we do not do it now, it will be too late for our loved ones that have this disease.

24/7 Helpline

Contact us for information, referral and support.

tel: 1.800.272.3900

tdd: 1.866.403.3073

e-mail: info@alz.org

National office


225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633

tel: 312.335.8700

tdd: 312.335.5886

fax: 1.866.699.1246

What should you do (As an individual)?

  • Please call/email the National Alzheimer’s Association every day and ask them to do more on social media.
  • Please like them on Facebook at https://www.facebook.com/actionalz and ask them every day to do more on social media.
  • If they are not going to raise awareness, we need to do it for them. Please share one thing every day on social media. (LinkedIn, Twitter, Facebook, Google+, Pinterest, etc.)
  • Please follow the National Alzheimer’s Association at @ALZAssociation on Twitter and ask them to tweet more often.
  • Please follow me on Twitter at @ALZandDementia.
  • Please use the #EndALZ hashtag in all social media, not just Twitter.
  • If you are not sure what to share; friend me on facebook at https://www.facebook.com/richardakenny and share what I share.

The National Alzheimer’s Association Social Media Presence or lack there of:

Twitter:

  • 25,350 followers (5.2 million people suffer from this disease and 15.4 million caregivers)
  • 1,537 tweets (this is not really that impressive)
  • 1,000 following (I’m happy to be one of them)

Facebook:

  • 386,000 likes (This is good, but it should be in the millions)
  • Right before #ALZForum (Alzheimer’s Advocacy Forum) – We had a lot of activity, but this ended after the forum – We should have this activity and more every day

6 fb ALZ talking

LinkedIn:

  • 9,445 members of the Alzheimer’s Association group (75+ Millions people on LinkedIn in the US)

http://www.socialbakers.com

There are a lot of people in the world and United States on Facebook and Twitter. Why can’t we do what our celebrities and politicians are doing?

  • The Alzheimer’s Association has 365k likes on Facebook and 23,500 followers on Twitter
  • Rihanna has 70 million likes on Facebook and 29.6 million followers on Twitter
  • The Simpsons have 64 million likes on Facebook and 1.1 million on Twitter
  • The Notebook (a movie about Alzheimer’s) has 13.9 million likes on Facebook

1 top 6 facebook fans2 7-14 fb fans

http://fanpagelist.com

Other Top Diseases:

Facebook

  • Breast Cancer – 3.8 million likes on Facebook
  • American Cancer Society – 795k likes on Facebook
  • American Heart Association – 349k likes on Facebook

Twitter:

  • American Cancer Society – 380k followers on twitter

Alzheimer’s Facts:

  • In 2012, 15.4 million caregivers provided
 an estimated 17.5 billion hours of unpaid care, valued at more than $216 billion.
  • Alzheimer’s disease is the sixth-leading cause of death.
    • Alzheimer’s disease is officially listed as the sixth-leading cause of death in the United States.(113)
    • It is the fifth-leading cause of death for those age 65 and older.(113)
    • However, it may cause even more deaths than official sources recognize.
    • As the number of people with Alzheimer’s disease and other dementias
 grows, spending for their care will increase dramatically.
      • For people with these conditions, aggregate payments for health care, long-term care and hospice
are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (in 2013 dollars).A19
      • Medicare and Medicaid cover about 70 percent of the costs of care.
      • Out-of-pocket expenses for long-distance caregivers Are nearly twice As much As local caregivers.
      • 1 in 3 seniors dies with Alzheimer’s or Another dementia.
      • An estimated 5.2 million Americans of all ages have Alzheimer’s disease in 2013.
        • This includes an estimated 5 million people age 65 and older(83), A1
        • Approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.(84)
        • One in nine people age 65 and older (11 percent) has Alzheimer’s disease.A2
        • About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.(83)
        • Of those with Alzheimer’s disease, an estimated 
4 percent are under age 65, 13 percent are 65 to 74, 
44 percent are 75 to 84, and 38 percent are 85 or older.(83), A3

7 death rate disease 3 growth of disease 4 health care costs

168250_601345999875469_1763592768_nhttp://www.alz.org/downloads/facts_figures_2013.pdf

Social and mobile facts and figures:

Mobile – with the number of people accessing the internet via a mobile phone increasing by 60.3% to 818.4 million in the last 2 years.

Older users adoption – On Twitter the 55-64 year age bracket is the fastest growing demographic at 79% since 2012.

The fastest growing demographic on Facebook’s and Google+’s networks are the 45 to 54 year age bracket at 46% and 56% respectively.

Facebook

  • 4.5 Billion Likes a day (Alzheimer’s Association – How many do you get?)
  • 4.75 Billion content items shared (Alzheimer’s Association – How many do you share?)
  • 189 million mobile only users
  • 1.11 Billion active users
  • 665 Million daily users
  • 751 Million monthly mobile users
  • 16 million local business pages
  • 7.5 Million promoted posts (Alzheimer’s Association – How many have you done?)

5 facebook stats

https://www.facebook.com/media/set/?set=a.10151908376636729.1073741825.20531316728&type=1

http://www.checkfacebook.com

Twitter

Twitter is the fastest growing social network in the world by active users according to a Global Web Index Study.

  • 44% growth from June 2012 to March 2013
  • 288 million monthly active users
  • That means that 21% of the world’s internet population are using Twitter every month
  • Over 500 million registered accounts
  • Twitter’s fastest growing age demographic is 55 to 64 year olds, registering an increase in active users of 79%

YouTube

  • 1 billion unique monthly visitors
  • 6 billion hours of videos are watched every month
  • This means that 50% more hours of video are watched in March 2013 compared to last August when it was 4 billion hours a month and last May when it was 3 billion.
  • YouTube reaches more U.S. adults ages 18-34 than any cable network

Google+

  • 359 million monthly active users according to a Global Web Index study
  • Its active users base grew by 33% from June 2012 through to March 2013

LinkedIn

  • 75+ million users in the US
  • The largest professional business network on the planet continues to grow but not at the pace of Twitter or Google+
  • Here are some numbers from Visual.ly.
    • Over 200 million users
    • 2 new users join it every second
    • 64% of users are outside the USA

http://smallbusiness.yahoo.com/advisor/21-awesome-social-media-facts-figures-statistics-2013-231748416.html

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How can a single University (Sanford) raise $1 Billion, but the Alzheimer’s Association can only raise hundreds of millions?

A University can raise $1 Billion in a year, but the Alzheimer’s Association can only raise hundreds of millions!!! Do we really need to have our universities/colleges raising billions on capital campaigns? (granted, some of this may go to a research facility or equipment, etc.) Wouldn’t this money be better served trying to find a cure for a disease that will cost this nation more than a trillion dollars a year for care by 2050?

Are you are donating large sums of money to the University/College that you graduated from? If so, please consider shifting some of your donations to a cause that can make a difference in the lives of millions and end a horrible disease.

Sanford’s capital campaign raised $1 Billion dollars in the last year. Our Presidential candidates raised Billions during the 2012 Presidential election. The Alzheimer’s Association raised hundreds of millions. Research funding from the National Institutes of Health (NIH) are currently funded around $600 million.

We need to go out and hire the best and brightest fundraisers to raise money for the Alzheimer’s Association. (Let’s look at political fundraisers and school fundraisers – They seem to know how to raise a lot of money)

ALZ Association Financials:

http://www.alz.org/about_us_financial_report.asp

Key points from the original article from the NY Times:

Last year, the university, near Palo Alto, said its five-year capital campaign, which ended in December 2011, had taken in a record-setting $6.23 billion, far exceeding its original goal of $4.3 billion, and surpassing by more than $2 billion any other single higher-education campaign.

The report, released Wednesday, found that colleges and universities in the United States raised $31 billion last year, or 2.3 percent more than in 2011, slightly ahead of the inflation rate. That is still slightly less than the $31.6 billion record, set in 2008, before the financial crisis cut deeply into charitable giving.

After Stanford, the fund-raising sums drop: Harvard raised $650 million; Yale, $544 million; the University of Southern California, $492 million; and Columbia, $490 million.

Together, the top 10 universities raised $5.3 billion of the $31 billion total.

Among public universities, the University of California, Berkeley, was the leading fund-raiser, bringing in $405 million.

The $1.035 billion in gifts to Stanford last year comes to about $56,000 for each of its 18,500 students.

Correction to their original story:

An earlier version of this article misstated the location of Stanford University. It is in Stanford, Calif., not Palo Alto. The article also misstated the date of when their five-year capital campaign ended. It was in December 2011, not Dec. 31, 2012. Also, the announcement was made last year, not earlier this month. The article also misstated the total amount of funds raised by Columbia.  It was $490 million, not $400 million.

http://www.nytimes.com/2013/02/21/education/stanfords-fund-raising-topped-1-billion-in-2012.html?smid=tw-share

Definition of a capital campaign:

Definition: A capital campaign is a time-limited effort by a nonprofit organization to raise significant dollars for a specific project.

Often the money raised is to fund the acquisition, construction, or renovation of a building. Sometimes, capital campaigns are used to build an endowment for the future. In other cases, capital campaigns fund an extraordinary expenditure such as an expensive piece of equipment.

Capital campaigns have a beginning and an end, but often span several years. A capital campaign employs all the usual means of raising funds such as direct mail and direct solicitation. Capital campaigns require extraordinary preparation and skillful execution.

http://nonprofit.about.com/od/c/g/capitalcamp.htm

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