I was contacted by our local newspaper the other day. The reporter heard of my wifes EOAD and wanted to know how a younger person deals with it. I told him she had great difficulty communicating at the stage and point she is at now. Then he asked if I would be willing to talk on the issue. I told him I would if he would focus it on the issues of EOAD. Some of the issues I have thought of to discuss are : the lack of help because your to young of above the poverty level to get any aide. Adult daycare isn't going to work when your in your early forties and the average person there is twenty years or more older. You have children at home to try and raise now as a single parent, the physical and emotional loss of there mom the loss of a wife as she regresses away from you a little more each day. If anyone can think of issues related to this please let me know so I can add them to my list and hopefully get some good attention to this subject. Thanks. Tony
This is so important. I am glad you are getting the chance to tell your story. One of our local stations did a story on an EOAD family in our area. I know the family, and although it was extremely difficult on all of them, it was the middle teenage son who was having the worst time. He had no idea how to deal with his Dad's AD, and he was hurting. He came with his mom to our support group once, but we really weren't much help to him. I think there needs to be support groups for children of EOAD parents. The kids need to get together with kids who are going through the same struggles - kids who can understand and support each other. Copy and paste the link below for the story of the Rodriguez family. Lorenzo is 56 now, but was diagnosed at 50, and was showing signs in his 40's.
Yesterday I happen to see on TV a commercial for persons diagnosed with AD to call a number to see if they would qualify for a new drug study. Today I called they asked me a series of questions. The study was for 21 weeks with 9 Dr office visits. They even told me that one of the locations was in my town. The study was for a Phase 2 study of a drug coded AC-3933. I thought as my wife would have if she could, that she had nothing to loose and perhaps anything that may help prevent AD or the possible genetic pass down to our sons would be worth it. After going through the questions and set up I was asked her age........ sorry you must be 55 or older. I am so fustrated angry and left with little but my faith and boys to keep me going. For those of you over 55 the clinical trials.gov identifier is NCT00359944.
I am so sorry you had to face another blockade. I just don't understand it - you would think that with the increased incidences of EOAD, they would be lining up to do studies on younger people.
Did you ever do that newspaper interview you spoke about? If so, is there a link to it, so we can read it?
I have been where you are now. My DH was also disqualified from a trial because he was too young. The doctor in charge of the trial where we live even had a conference call with the drug company to ask them to make an exception because of David's family history and because he was only 2 yrs under the cutoff of 55 but they wouldn't budge. Just makes you want to scream. Our daughter is only 8 and it breaks my heart to have to see her go through this.
Joang: The story to promote awareness of EOAD and its unique issues has gotten a lot of positive response. I believe my decision to go public with it confirms that there are a lot of questions and misconceptions about EOAD. I hope this helps others to know they are not alone.
Check the front page of the website. I posted your story and links. I hope I have done justice to your cause, and that the Alzheimer's Association and others who are in a position to help will read and take action.
Joang: I just thought I would let you know that I have gotten several contacts from other caregivers of EOAD spouses. I am glad I did the story but I did have my doubts and a little reluctants to go public. However the fact that I have been able to help others by raising this issue and giving them a contact outlet has been the first real positive thing to come out of this EOAD nightmare. I also referred them to your site.
I felt the same as you before I started this website. It was a difficult decision to go public, but it has turned into a major positive. Thank you for referring my site.
Check the topic on this board - "This site and the information included" - Read what Lew wrote. He is the spouse of an EOAD woman - you will definitely be able to relate to him. He is new to this and hurting badly.
Take a look at this weekend's (Feb. 8/9) Blog on another EOAD case. I realize "David" is in a much earlier stage than your wife, but Mary's goal is the same as yours - awareness, education, and HELP for EOAD families. As soon as she sends it to me, I will add the area code to the phone number at the end of the article.
I honestly believe that if you all band together and make enough noise, you can institute change. Good Luck!
I am glad to hear all the responce. I am making new contacts every day. I even was contacted by the local community college nursing school to see if I would talk on the issues of EOAD and the ordeals of being a caregiver. I am glad that my efforts by going public are helping others just as your website has done. Like I was told once and never forgot "nothing beats a failure but a try".
Tony... I posted a response to your artical in the paper.....I,m Dan over in Summerfield.. I admire you for coming forward and as soon as Joan gets the personal info area set up maybe we can contact each other and meet for coffee or a beer... My mother and my youngest son are here right now so I was able to get away this afternoon and rode ( on the motorcycle.... WOW an afternoon away ) with some friends over to Daytona and going thru Deland on our way back I thought of you cause your so close to Deland... Anyway I;ll wait to hear from you cause your so busy with work and the kids and maybe we will get the opportunity to meet......... Dan
Dan, I read your post and noted you ride a motorcycle. My wife was diagnosed EOAD last June07. She had been having lapses in memory for quite awhile, but due to chemotherapy from breast cancer we thought that was the cause, but it was getting worse. It was driving me nuts, and we were getting into arguements because of her forgetfulness. I too ride a m/c and I would sometimes go out into the country just to get away from the pressure of this situation. I had to learn a lesson the hard way about how this disease affects both of us. I got to where I was so angry about this and it caused me not to concentrate as much as I should and I crashed and broke my leg. That threw all the problems back on her to take care of me and deal with her diagnosis. I have never had an experience like this in my entire life. You are helpless. I am now seeing some of what she must be going through. We both turned 70 this last year, and thought we would be having some fun--ha ha-. No ne told me getting old would be like this!!! Lew
Yes Lew ,, If your not carefull they will hurt you ( Motorcycles )..... I,m 59 and live every day with the dreams I have about finishing what I started while riding the bike.... When this hatefull journey began ( 3-4 Yrs. ago )I was letting it drag me along, but have since made up my mind that damnit I;m not also going to be a victim........hang in there my friend and may we all live long enough to fullfill our dreams........
Yes I think it would be great if we could get together for a coffee or beer. I hope to get others in the area together who are careing for EOAD spouses. I have two so far in responce to my story. I also will post info on Joans info site when up.
I got your phone message last week and wrote your number down but OF COURSE I misplaced it. It's been a crazy week. Please call again or pass your number on through Joan.
Joan, could you please send Tony my email? Thank you.
I am putting what little free time I have to work as an advocate for the alzheimers association. Yesterday I went to a town hall meeting that was put on by U.S. Senator Bill Nelson. I briefly told him my EOAD story and I put in a pitch for more money to be allocated for NIH for additional research on alzheimers. He was receptive to it. I hope and pray my efforts will be rewarded.
Tony Many thanks for your hard work getting the message out to all including the govt. We appreciate it and will continue to pray for you and more research for EOAD and all forms of AD.
Good for you! As you know, I'm in Florida too, as are many of my readers. As a follow up to your town meeting, I am going to write to him - Hey, Floridians, let's fill up Senator Nelson's mailbox!
Thanks. It was one of the most difficult things I've ever had to do in my life. When I watched the story on TV it was amost sureal- like I was watching someone else's life not my own.
Before I go to D.C. next week, I was asked to compile a list of topics, issues , experiences that are often faced by those dealing with EOAD. For example, helping children to cope, lack of respite care, too young for govt. aide ect... If any readers have an issue related to EOAD that they would like me to add to mine to present please let me know. You can email me at tonypesare@yahoo.com. I hope to present our comments at the early stage advisory group meeting next Monday. Thanks.
I couldn't agree with you more on your blogs about our experiences in D.C. As you know one of the themes to get out this year besides more MONEY was to let our elected officials know that AD in not just and "OLD PERSONS DISEASE". By attending this forum, I was fortunate enough to take that message personally to capital hill and I hope make a positive impact by delivering it and all the issues you mentioned in person. There is so much work that still needs to be done and as you write we must keep EOAD and AD on the front burner and in the public spotlight. One congressional aide I spoke with told me after our meeting thanks for the education on EOAD I gave him, he told me to remember in D.C. the squeeky wheel not only gets the grease it is what gets the money. I am now working on taking that message around the state and to Tallahassee. I am in touch with NPR radio who was at the early onset town hall meeting also. I know there is much more to post from our trip and look to your future blogs. It was so good to meet you and work together on this cause "A WORLD WITHOUT ALZHEIMER'S"
Tony, Thank you for all your efforts with EOAD. It must have been a very hard decision to make to take this on. I appreciate it. My husband was diagnosed about 4 years ago (now 54) and it did take a while to get the diagnosis due to his age. I can relate to your earlier post about being turned down for the clinical trial as the same thing happened to us. Our doctor also practically begged, but my husband was 1 year too young. We continue with Namenda and Aricept praying that it is slowing down the process. He does not realize how disabled he is. In the scheme of the disease, he is doing ok, but is far from normal and it has progressed so much since the diagnosis. We have 2 grown daughters(22 and 24) and a 12 year old boy. It is very hard on him as I am sure it is for your children. I agree that there are not 'age' appropriate programs for the Alz. patient, the spouse or the children. We are just gliding along right now, but I know the worst is yet to come. I really hope my son is off to college before it gets too bad. Thankfully I am able to stay at home as my husband needs me and I can be available for my son. THANK YOU AGAIN (Joan also) for everything you are doing for this cause.
Tony, Thank you so for your efforts on EOAD. My husband was daignosed at 52 years old but we look back to symptoms up to 12 yrs earlier. He is now going into stage 6 quickly. He had a head injury that the dr belives sped up his progression to an earlier age. If I had to go through this though, in ways, I am glad it is while I am as young as I am and not in our later years when I might not be as able to care for him. I DO agree that the government needs to address the disease NOT just being an OLD person's disease, and with the stats going up daily for early ages of Alz, someone needs to wake them up to the fact that we do not qualify for many "senior" over 62 services.
I have been very interested in the discussions about EOAD, particularly that doctors don't seem to recognize it. When I was in Medical School 50+ years ago Alzheimer's Disease was known as "Pre-senile Dementia". The original case, reported by Dr. Alois Alzheimer in 1906 was a woman who died at age 56 of memory loss and confusion. At autopsy she showed the plaques and tangles that typify "Alzheimer's Disease". It was not until 1977 that it was recognized that "Pre-senile Dementia" and the "usual" dementia of old age were the same disease. Since then, because the majority of patients are in the older age group, the doctors trained since 1977 may not recognize the less common EOAD. If we follow the report of Dr. Alzheimer, only those in the younger age group would be called "Alzheimer's Disease", with another name for the entire spectrum. When I was in practice I had a hard time diagnosing someone over 65 with Alzheimer's Disease, since I knew it as pre-senile dementia, so the older patients just had the dementia of old age. With my wife now a victim, I have become better educated regarding this disease, learning more than I ever learned in medical school from those of you on this group.
I agree with decblu that the government and insurance companies need to wake up to the reality that this disease affects more than just the elderly (whatever that means. To me anyone over 90 is beginning to approach elderly)
My husband has not been diagnosed yet. He is almost 42 and has been exibiting symptoms as far back as his early thirties...starting with strange, non-specific headaches. We do not know his heriditary history as he was adopted. Anyway, something that has stricken me over the last couple of weeks is that of all the people in our Alzheimer association support group, only one of them is not EOAD (there are 7 of us). However, my hubby is by far the youngest and it is so difficult hearing about the clinical trials every one is either in, or about to be in, knowing that DH can not qualify.
It must be terribly frustrating. However, once in a blue moon they do accept patients in your husband's age range.
I had tripped across one trial that was accepting patients as young as 40, on deep brain stimulation. (Okay, guys, don't hit me. I know this is a rather unusual approach to treating AD, but you don't know what you'd be willing to consider if your spouse was as young as Kirsty's. Besides, it's being used in 40,000 patients to treat Parkinson's, so it isn't all that far out.)
Deep Brain Stimulation (DBS) for Alzheimer's Disease ClinicalTrials.gov Identifier: NCT00658125
I did a quick search of http://clinicaltrials.gov/ct2/home
I entirely forgot that your husband hasn't been diagnosed yet, so I didn't look at all the trials on diagnosis. The only one I looked at that was taking people as young as your husband was:
Improved diagnosis of AD using synchronous neural interaction ClinicalTrials.gov Identifier: NCT00666445
Trials that do apparently have age as a criterion:
Vitamin E and Namenda (Memantine) for the Treatment of Patients With Mild to Moderate Alzheimer's Disease ClinicalTrials.gov Identifier: NCT00235716
Development of NIC5-15 in the Treatment of Alzheimer's Disease ClinicalTrials.gov Identifier: NCT00470418
There were a couple of trials accepting patients as young as 19, but my original attempt to post disappeared into the ozone, and I've lost the info. Do an advanced search at the clinical trial web site, if you're interested. They typically require that the patients have already been diagnosed with AD, but you might coax them into giving you a diagnosis if you and your husband were interested in participating, and met the rest of the qualifications.
Yesterday my dear wife of 21 years peacefully lost her battle to AD. Having now seen what this horrible disease can do first hand has only given me strength and resolve to continue my advocacy to find a cure. I pray now that God will give me strength and guidance as I raise my sons and we go on. Thanks for all your support over the past year. Sincerely: Tony
At times like this, it is difficult to find the words to say.... I am so sorry for your loss, keeping you and your family in my thoughts and prayers, Nikki
Tony, I recently lost my dad, I came across this and thought I might share it with you... It is called the reunion heart.... it is a heart with a tear drop shape cut out of it..
The Reunion Heart..
Since Heaven has become your home I sometimes feel I'm so alone; and though we now are far apart you hold a big piece of my heart.
I never knew how much I'd grieve when it was time for you to leave, or just how much my heart would ache from that one fragment you would take.
God lets this tender hole remain reminding me we'll meet again, and one day all the pain will cease when He restores this missing piece
He'll turn to joy my every tear with thoughts of you I hold so dear and they'll become my special way to treasure our Reunion Day.
Tony, I am so sorry to read of the loss of your dear wife....I know you will continue to be a wonderful father to your boys. You honored your wife by your loving care and devotion. My thoughts and prayer are with you and your family.
Tony, Thinking of you and your family at this difficult time. I appreciate all you efforts on educating the public about this horrible disease, especially at a time when just getting thru the day must have been so hard. Please let your kids know we are thinking of them and all they have and will deal with this also. PatB
I want everyone to know what a courageous battle Tony and his family have fought against this scourge of a disease. The newer members of this forum should know that in Tony's case, EOAD really lived up to its name - EARLY. Tracey was only 43 years old. Tony's boys are 18, 16, and 12.
I had the privilege of meeting Tony when we went to DC. He is an outstanding advocate for EOAD issues, and a terrific guy.
My heart is with him and his family during this difficult time.
My heart aches for you and your boys. What a wonderful example you have shown them by your love and devotion to their mother...and to them. You all will be in my thoughts and prayers. My sincerest sympathies.
tony, i am so sorry to read of your loss. this has hit me hard. my dh also has eoad at 52 years old. he is declining rapidly. such a difference a day can make. i grieve for you and your boys. may god comfort and bless you and your boys. jav
Words cannot convey the sadness I feel in my heart for you and your young family...I hope you can continue to fight for the understanding and support of help for E'OAD victims as you have been doing. Right now may you and your children be comforted by our heavenly father as you mourn the loss of your beautiful young wife.
I don't have the words to express how sad I feel for you and your sons.In all of your previous posts.. I could feel the love you shared with your wife and sons.
I wish you peace
Please know that you have touched the lives of may people with your example of compassion and care.