WBUR

At 59, A Father’s Devastating Diagnosis

BOSTON — The Kelly home in suburban Boston feels as lively and chaotic as any home to three kids under the age of 13; it’s loud, and strewn with knapsacks, sports equipment and homework. It’s where you might find middle-aged parents struggling with the minor ailments of mid-life — diminished vision, some back problems — but not Alzheimer’s.

However, for the past year and a half, Dr. Ralph Kelly, the children’s father, has been battling the disease. He was diagnosed when he was just 59.

Ralph began to notice that something was wrong long before his diagnosis. He was a vice president at the biotech firm Genzyme Corp., and he started to find it increasingly difficult to get his work done. “It took me two to three times longer to write a report as it would have a couple of years earlier,” Ralph recalls. “People were talking behind my back, asking I guess, ‘What’s wrong with Ralph?’ ”

Soon the signs became more frequent — forgetfulness, confusion and frequently getting lost. “One day I was walking from my home and I walked a few blocks and turned around and had no idea where I was,” he says. “I became lost in an area where I had lived for 20 years.”

It was a tough reality for this former doctor with a prestigious career in medical research. But even with his medical expertise, Ralph had no clue he was in the early stages of Alzheimer’s.

Looking back, his wife, Ruth Fretts, who is also a doctor, says she was reluctant to consider that it might be Alzheimer’s. “It’s just scary,” she says. “You don’t want to think about it at all. There are these ‘OMG’ moments. You didn’t want it to be Alzheimer’s, but a lot of things were coming apart.”

From left: Avory, Arden, Nick and Evan Kelly while vacationing in Rome (Courtesy)

From left: Avory, Arden, Nick and Evan Kelly while vacationing in Rome (Courtesy)

‘It’s As If You Are Swimming In Glue’

Things finally came to a head in the spring of 2010, when Ralph was giving a company-wide presentation. He lost his train of thought and couldn’t get the words out. “It’s almost as if you are swimming in glue,” he says, “and you can barely hear the outside.” He still cringes as he recalls being laughed at, and feeling humiliated.

Ralph says shortly after that incident, he was told his job was being eliminated. The crisis led him to seek a medical evaluation. The diagnosis: Alzheimer’s. Ruth says hearing the word was devastating. “It felt as if someone had died,” she says. “It plunged me into complete grief.”

As horrible as the diagnosis was, another daunting task lay ahead: Ruth and Ralph had to explain to their then-young children that their dad had a debilitating and deadly disease. For advice, Ruth turned to Dr. Paula Rauch, director of Massachusetts General Hospital’s Parenting At A Challenging Time Program. Dr. Rauch advised Ruth to tell her children as soon as possible.

“Parents imagine not talking to their children is being protective, and what we learn from children is that they don’t feel protected, they feel excluded,” she explains. “Children hear their parents talking to other people, they have a sense that something is going on.”

So Ralph and Ruth sat down with their children to share the news that their dad had Alzheimer’s. Ruth was determined not to sugarcoat the truth, even when their eldest daughter Arden, who was 10, asked the tough questions about how long Ralph had left to live.

“I suppose I could have fudged that,” she says, “but I didn’t.” And neither did the kids. When Arden did the Alzheimer’s Walk, she posted on her website that her dad was dying.

Ruth assured the children that they were doing everything possible to help Ralph and she told them he would be taking part in an experimental drug trial that might help him.

Problem-Solving

Ralph is part of a drug trial at Brigham and Women’s Hospital’s Memory Disorders Unit in Boston, where he goes every month to be infused. But first he must undergo cognitive testing with neuropsychologist Dr. Dorene Rentz.

Dr. Rentz begins with a simple question: “Where did you last work?”

Ralph hesitates, stammers, and after an excruciating minute or so, he blurts out “Genzyme.” Then Dr. Rentz moves on to a problem-solving question.

“How many quarters are there are in $6.75?” This time, Ralph does not come up with the correct answer.

The cognitive testing is part of a double blind trial to test the drug Bapineuzumab. The drug appears to be effective in reducing the amount of amyloid plaques in the brain, which are believed to cause brain damage in Alzheimer’s patients.

But Dr. Rentz says even if the drug clears amyloid, patients may not see any benefit. “The whole thought now is that we’re treating too late in the disease process,” she says. “We can remove the plaque from the brain, but we may not be doing anything to reverse the actual disease.”

For Ralph the drug is his only hope. “I am beside myself because there is nothing, nothing out there besides Bapineuzumab,” he sighs. “I don’t have that much time.”

“I have four to six years left and I have to make them as meaningful as they can be.”
– Ralph Kelly

Finding Support

As Ruth looks after Ralph, her three children and her obstetrical practice, she has found support from those who best understand what she is going through — other spouses of Alzheimer’s victims.

At a support group in the Watertown offices of the Alzheimer’s Association, she shares concerns large and small. On a recent night, Ruth questions her decision to get another dog. She worries that it added more chaos to an already-chaotic home.

“I was thinking of Ralph, thinking that he would like the company,” she says. “There is something about dogs that make you live in the moment.”

The facilitator helps Ruth understand the value of a dog and reassures her. “Maybe I just have to get through the hump, you know?” Ruth says.

Staying In The Present

Ralph now spends most of his days at home with his family. “I miss the world of science and research,” he says, “but I have four to six years left and I have to make them as meaningful as they can be.”

He could have tried to work a bit longer, but chose instead to spend as much time as possible with his children. “When he was working he was not home a lot. It’s definitely better now,” Arden says. “He helps me with soccer and we watch a lot of science programs together.”

Ralph is in the relatively early stages of Alzheimer’s, where he has good days and bad. But further down the road the disease follows a terrible course. Beyond the memory loss, there is the inability to read or to recognize loved ones, and there are profound personality changes.

Ralph and Ruth say their challenge is to stay in the present, to create joy in their lives, and to create memories that will sustain.

“My initial thought was that this was going faster than I thought it would,” Ruth says. “But now we actually are holding steady and we will take it and make the very best of it. We will deal with what we have to deal with.”

She adds, smiling through her tears, “I still picked the right guy.”

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  • Linda Shepard Salzer

    My mother had obvious signs of Alzheimer’s at age 52, died at 67. She also had significant symptoms of metal toxicity.  I wonder how many mercury amalgam dental fillings Ralph has and what other exposures to toxic metals.  I recommend Andrew Hall Cutler’s books.  www.noamalgam.com and www.noamalgam.com/hairtestbook.html .
    Linda (mercury and arsenic poisoning survivor)

  • Rita Riess

    I worked with Ralph at Genzyme, but had left the company 3 years ago.  I had no idea that he had received this difficult and life changing diagnosis.  Ralph was a great person to work with and I hope that he and his family enjoy the time he has with them to the hilt.  His memories may be fading but hopefully the new memories will be cherished ones.

  • david snieckus

    Alzheimer’s
    Disease.

    Alzheimer’s is a
    degenerative brain disease in which nerve fibers become tangled, protein
    deposits or plaque build up in the brain tissue, and normal mental functioning
    declines. Characterized by memory loss, disorientation, and confusion,
    Alzheimer’s is commonly accompanied by frustration, bewilderment, dramatic mood
    swings, and gradual loss of physical and mental abilities. In the end, the
    persons grow noncommunicative, incontinent, and physically unable to care for
    themselves. Death follows from with several years to more that 20 years, with
    the average about 7 years. In the United States, Alzheimer’s is the
    fourth leading cause of death after heart disease, cancer and stroke among
    adults. Women are twice as likely as men to have the disease, whites are four
    times as susceptible as blacks, and one our of three elderly persons over 80
    has Alzheimer’s. the disease is considered incurable, and modern science use
    several medications to slow down it’s spread, control mood swings and other symptoms.
    Family support is a major concern, as caring for an Alzheimer’s patient puts
    tremendous stress on other family members.

     

    FROM THE MACROBIOTIC
    VIEW, Alzheimer’s is caused by long-term dietary excess. When food becomes
    one-sided, either too expansive or too contractive, it affects thinking, the
    emotions, and mental functioning. If the nerves, neurological centers, and
    brain cells and tissues are too tight or too loose, thinking becomes impaired.
    THE PRIMARY CAUSE of Alzheimer’s is chronic consumption of excessive animal fat
    and protein from meat, dairy, chicken, and eggs, which effect the nerves and
    capillaries. THE SECONDARY CAUSE is excessive intake of simple sugars,
    especially white sugar, chocolate and honey. Sugar affects the synthesis of the
    B vitamins in the intestines and consequently brain functioning. Too much oily,
    greasy food; refined flour from bread and pasta; hot spices, including mustard
    and garlic, are contributing factors. Overeating may also be involved.

    p. 326-327 The
    Macrobiotic Path to Total Health by Michio Kushi and Alex Jack, Ballantine
    Books, NY 2003

  • Michael P. Biber, M.D.

    I only heard the last part of today’s first segment of your series.  As an Alzheimer’s clinical trials researcher, at Neurocare Center for Research, in Newton, and as a neurologist who has treated  many Alzheimer’s patients, I was disappointed with errors by commission and omission:
             1.  There was a comment implying that as for investigational drugs bapineuzumab is all there     is.  In fact, there are many other drug candidates being investigated in the hope that they will slow or even arrest the progression of the disease.  Just a month ago there was an encouraging, admittedly preliminary, report the  nasally inhaled insulin had a positive effect for trials subjects with mild to moderate Alzheimer’s with no serious side effects! 
              2. In the portion I heard there was no mention of the important fact that when patients with Alzheimer’s are treated with investigative drugs, and the same is true for FDA-approved drugs that may improve memory for up to a year or so, there is a wide range of responses.  To this point, most patients do not experience any measurable improvement in the case of the approved drugs and this is also true for the investigational treatments.  However, it is also true that some patients do remarkably better taking the FDQ-approved and also some of the investigational drugs.  Just two years ago we saw this at our research site when a minority of Alzheimer’s subjects had dramatic slowing of the progression of their Alzheimer’s for a period of two years, but because they were a minority the drug company that developed the drug and sponsored the trial halted the trial.
             3. A statement was made that as ALzheimer’s advances there are profound personality changes in the behavior of the afflicted.  Certainly, that is true for a substantial group of Alzheimer’s patients but it is also true that many patients retain their personality even after their memory and cognitive problems become very disabling.
             4. Carefully chosen and potentially promising clinical trials are incredibly important for Alzheimer’s patients and their caregivers.  Such trials are the only hope at this time of possibly slowing or arresting the course of this terrible condition.  Published data documents that Alzheimer’s patients who participate in trials are less likely to be transferred to long-term care facilities later in the course of their disease.  Subjects and caregivers who participate in the trials we have done almost always want to move on to new trials when one they have been engaged in is completed.  When I have asked them why they choose to return they consistently inform me that having mild to moderate Alzheimer’s causes profound loneliness as patients’ connections to friends and family are degraded.  Participating in a trial involves patients in activities that can be stimulating .  They appreciate being in a genuinely caring environment.  Also, they believe that we are passionate about identifying potentially worthwhile investigative drugs for Alzheimer’s, not just retreads of FDA-approved drugs.

    I applaud your broadcasting a series about Alzheimer’s.  I hope that there will be fewer problems with the next four segments.  Despite the four issues that I have noted the first segment was still an effective heads-up for your audience. 

    I am hoping that in your future segments there will adequate time to present the very important challenges for caregivers.  Between 25 and 50% of them become depressed during the course of their loved ones’ Alzheimer’s progression. There is evidence that participation in trials also has a benefit for caregivers even though they have to endure the burden of spending time accompanying their loved one to research sites for multiple visits.

    So, please expand your good work regarding Alzheimer’s.  There are ~120,ooo people in Massachusetts with the disease and many are not being diagnosed. Many of the undiagnosed with Alzheimer’s do not get treatment and, even more importantly, those with treatable conditions that can mimic Alzheimer’s remain untreated, often with devastating preventable consequences.

  • Jane R Moss

    I feel so sad after watching the video and reading this story. I think they are amazing family and 
    will try there best to make Ralph’s life the best they can.

  • Rob

    I feel your pain. My Father was diagnosed at 59 as well. Feel free to contact me as I am local here in Boston. rjcurtis@gmail.com  Also, reach out to Boston U Alzheimer’s Research if you haven’t already.  

  • Ruth Fretts and Ralph Kelly

    Thank you for your support. We learned quite a bit the first year. First was if you don’t let people know what you are going through, you won’t get help. You need to have people to “have your back” and keep an eye out for your kids. 

    When someone asks “it there something I can do?”, I always say “I will think of something” and sure enough I do.

     Our kids have been in the loop since the begining, there was really no choice. Everyone knew something was wrong. If we tried to hid it, our kids would loose our trust. I have tought our kids that “showing up makes a difference”. And if you have a friend or family member with Alzheimer’s, show up. The whole family will thank you.Ruth Fretts and Ralph Kelly

    • Chris Papadopoulos

      Hi Ruth and Ralph,

      I am deeply sorry and saddened to hear about Ralph’s condition. Ralph used to live in the apartment right above ours when I was growing up.  In 1989 while my grandmother was visiting from Greece,  she suffered a stroke. Because our family had limited resources, my mother asked if Ralph could take a look at my grandmother after when she was experiencing symptoms of a stroke. He was very kind to do so and made the diagnosis that she did, indeed suffer a stroke. Ralph continued to follow up with us regarding her condition and even donated a blood pressure monitor that we could use to monitor our grandmothers condition.

      I wish you both the best.

      -Chris Papadopoulos

      • Chris Papadopoulos

        Ralph is truly a very giving person.

    • Karen

      First off thank you for thinking of us the other night.  I just wished you could of joined us.  Ruth and Ralph, we’ve known one another for some time now.  Our daughters have been growing into beautiful young ladies together & formed a bond & trust w/each other that will surely last a lifetime.  Our family considers her one of our own.  Needless to say I’ve known for sometime now and am grateful that she feels comfortable enough & trusts us enough to come over and talk freely w/us.  I know how difficult this DX is for the family.  I admire both of you for your strength, courage and spirit.  Know that we are here.

      -Karen   

  • Emcd2007

    http://www.rxlist.com/script/main/art.asp?articlekey=121966

    Arthritis Drugs Linked to Lower Odds of Alzheimer’s

    http://www.emedicinehealth.com/script/main/art.asp?articlekey=121931
    Arthritis Drugs Linked to Lower Odds of Alzheimer’s

  • Inge Thorn Engler

    I know Ruth Fretts, and have admired her enormously, even before reading this article.  She has always been open about her own life, which is rare in a doctor/patient relationship.  She is my gynecologist, and a very kind and helpful one.  I wish her and her family all the best and pray that the disease takes the gentlest course possible and that they all have the strength to support each other, however long it takes.   

  • JT

    “a dissent into hell”.  My mom worked in Geriatrics and is now 84. My dad was diagnosed with Alzheimer’s and she taught me more about what a Dr. or any book can tell me. My dad was a paratrooper in WWII and a smart, funny and successful man. He was able to do the New York Times crossword puzzle in a half hour on his ride into NYC, “in pen”. then the dissent into he;ll began to a point where as we joked, he would make a new friend every time we came to visit. My mom took care of him and I learned about the disease as I helped her. There is no cure. All you can do is make the patient comfortable.

    I explained with my limited skills that the brain is like a computer and as it gets older, it has a hard time accessing the files called memory. Although, the older files, having been opened more often are sometimes accessed easier. Thus, he can remember his old high school chum, but can’t remember what movie he just saw or what he had for lunch. to fix a computer that is slow, we add more memory and eventually discard it. We can’t add more memory to a human thus he will be disrded, put into a home or a facility where he can be cared for because in this country, the young family members aren’t trained to handle the elderly. My mom put my dad in the VA hospital when she couldn’t lift him any more.

    Thank the stars for the VA hospital. they were kind caring and just, in a word, GREAT.

    My dad died at 77. my mom is 84 and still lives independently.  The drugs recommended by Dr’s for my dad caused more side effects and problems than the disease itself.

    The only thing  in the end that he responded to was my guitar playing. An empty stare, sitting quietly, tapping his fingers.

  • Pmayville

    I am so impressed in the way you have engaged your kids.  We are a family living with the legagy of Alzheimer’s.  Some days I catch myself wondering what our life would have been like without the disease, but then again it has made us who we are.  You are blessed to have one another.  Thank you for your courage and your honesty.

  • Anonymous

    So sorry for what your family is going through with this difficult disease!!!  My hubs is 47 and also has Alz.  And like you, we have 2 children and we have worked hard to inform them as to what is going on and why.  They are 14 and 16. It’s a busy time of life to battle this disease so I do feel for all of you.  Let your kids know they are not a lone there are other kids who have parents with Alz also.  Kudos to your daughter for doing the Alz walk. Best Wishes to your family!!  May these clinical trials find some kind of hope for the onslaught of this disease on the brain!

  • MIchael Ferguson

    18 Oct 11
     I have known Ralph Kelly since 1968 back in Kitchener, Ontario. His wit, intelligence and unfailing generosity have always made him one of the best people I know. I am saddened by this news. For someone whose intellect and curiosity are so much a part of him, this news foretells a difficult journey. I trust his family will have the courage and the help they will need to help Ralph, father, doctor, friend and great American-Canadian, through the times to come. Affectionately and with sadness, Michael Ferguson, Kitchener, Ontario, Canada.

  • Emcd
  • Meredith

    Dear Ruth and Ralph

    I am so terribly sorry to hear about the diagnosis. Degenerative diseases are extremely difficult for a family to cope with, my own mom has Parkinson’s disease, not nearly as destructive but I understand how heart-wrenching it is for kids to know that their parent is not always going to be around. I commend your decision to spend as much time as possible together. I truly believe the power of a families love and support can make a huge difference in everyone’s quality of life. I wish the best for all of you- your strength and resilience is a message of hope for all who suffer. 

    Meredith (Lindsey’s friend from Ottawa) 

  • Yana Lambert

    Many thanks to WBUR and to Ruth and Ralph for sharing your story. My husband is further along since his diagnosis in Sept 2008 — 2 neurologists in recent months have used the word “severe” following cognitive testing, though I think he may be in the mild stage of “severe” (or perhaps the severe stage of moderate — who can say, really?).
    So far, I can share this one ray of hope: I am convinced that surrounding the person with Alzheimer’s with love and more love, and making sure he/she feels safe, protected, nourished and nurtured will go a long way in helping to retain our loved one’s sense of self and well-being. Lots of hugs  help. Crying together is good too. God bless us, everyone!

  • Ruth Fretts and Ralph Kelly

    Thank you Iris Adler. Many people struggle quietly, searching for a bit more energy to get through the day, the series has been our “advocay work”, and you have brought this out in the open. In my medical practice, I have learned that “everyone has a story”, our’s is just one of many. If I could take just one thing off the weight of any disease, or worry, I do, and sometimes I just listen. 
    For my kids we try to fit in “cool things” every now and then, and when a nice opportunity comes our way, we try to take it. I am very proud of our kids, these are not ordinary times, but we have all grown, have tried to be more kind to each other and have enjoyed the beautiful light in the late afternoons.
    Ruth Fretts Ralph Kelly, Nick Kelly, Evan Kelly, Arden Kelly, Avery Kelly. 

    • Rich

      Dear Ralph,

      I just heard about your Alzheimer’s illness on WBUR while I was at work and I was very moved by it. The one thing I sensed from you in the video and on the WBUR program is that you were
      positive about your condition and the future. You’re making the best of a not so great situation and I think that’s an awesome example for your children!

      BTW: You mentioned during the radio program that there was nothing out there to 
      successfully treat Alzheimers. Well…I was wondering if you would be interested in some
      rather amazing information I have stumbled upon concerning the treatment of Alzheimers
      as well as many other ailments. I would be happy to share it with you if you have any
      interest. You can reach me at leproducts at verizon.net.

      I hope this message finds you well and may God Bless You and Your Family. (^_^)

      ~Rich Cully

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  • Paula McColgan

    Hi Ralph,

    I heard about the news from Cathy and was astonished.  Reading your story, it seems that you are Ruth have a terrific attitude, and I think a positive attitude is everything.  I would love to hear from you.  Although we have moved, my cell phone is still the same.

    Your old friend from the Brigham,

    Paula McC

  • catf

    Has Ralph ever been tested for Lyme Disease?  There is a school of thought that says chronic Lyme disease can cause these symptoms.  Find a Lyme Literate Doctor, not an infectious disease specialist.  Best of luck.  Ralph’s young age makes me think of this possibility.

  • Lee Mac

    Just to suggest to anyone who wants to test for heavy metals. I live in the UK and done a test and was amazed to see the levels of toxins in my body (some heavy metals have been implicated in Alzheimer’s) http://www.novadetox.co.uk/acatalog/hair-mineral-analysis.html it may be of interest to a family member who wants to check a parent? thanks for interesting but sad article.

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