Hi, I have made a couple of posts, but now I am jumping in. It’s only fair. You all have shared so much of yourselves and helped me in more ways that I can explain. My name is Stephanie and I am the primary caregiver for my husband Glen. I am 50 and he is 52. We recently celebrated our 20th wedding anniversary and were soul-mates for 3 years before making it official. We don’t have any children…just our two feline fuzzballs, Pugslie and Nathan.
I work full-time as a Vocational Evaluator for LA Rehabilitation Services, a state agency that is an employment agency for people with disabilities. I am also a graduate student working on my Master’s Degree in Vocational Rehabilitation Counseling on-line through the UNT at Denton.
I also care for my elderly mother, whose health is declining…and I am an only child with no extended family to help.
Glen was diagnosed 19 months ago with EOAD, but he was increasingly symptomatic for about 2 years prior to his diagnosis. Glen had a stroke on 7/6/2003, but made a remarkable recovery. Memory problems were noticeable, but minor. At the time, he worked at the local radio stations as News Director and Public Affairs Director for all four stations. In conjunction with this job, he also worked for a traffic reporting company requiring him to report traffic conditions in morning and afternoon drive shifts for three of the stations. Between his job and participation in community and regional theatre and films, people in our area know who he is. In 3/2007 he was diagnosed with EOAD. He is currently in stage 4 of the 7 stages. He is on Namenda and Aricept, and a multitude of other medications for depression, HBP, diabetes, cholesterol, etc... Late Onset AD runs in his family, but he is the first to have Early On-Set. Other contributing medical issues, HBP and diabetes, are under control. Depression is not under control.
On 8/28/07, Glen could not handle the pressure, chaos and every-changing routines & new boss/owner at the radio station and quit his job. He has since found part-time work at the local Library in Reference Department. It is his dream job and he loves it. Because Libraries have always been a positive part of his life, he is doing very well. His supervisors and co-workers know about his AD and are very supportive.
In 10/07, he began having trouble with profuse sweating and vomiting with minor exertion. They did an EKG, 48 hour cardiac halter and a Table Tilt test which confirmed he had a low heart rate, 45 and during the carotid massage his heart did not restart on its own for 15 seconds. All of this resulted in him getting a pacemaker in 11/07. He has been doing fine with this issue. The latest…sleep apnea. He is in the process of this assessment.
Glen really doesn't understand how far along his disease has progressed, nor does he realize there is a difference between Early onset and Late onset. He thinks he will be like his father and he won't be affected for many years to come and I don't tell him any different.
I know this is a long post, but for those of you who stuck it out…thanks for listening. I promise I won’t always be this wordy.
Welcome Stephanie So glad you posted. Thanks for sharing your story. You have a lot on your plate. I am 70 and DH 73. I think he is stage 5-6. He has Parkenism/AD?VD Until she passed in May 2008 my Mother lived with us. I am also an only child. We have 3 children and they are supportive. My Mother has had age decline he last few years and we had Hospice the last 6 months, so I can relate to all you are going through. Having one with AD is a full-plate but you add in a aged parent and everything multiplies
You already know how supportive and helpful this site is and I am glad you found it and hope you continue posting.
Welcome Stephanie I also have two furry felines. I don't know why-but they have both been demanding dual lap time tonight. One is a Maine Coon so we are dealing with big boys. I have a question for you. Do you think being a health care professional made you more aware of your husband's dementia earlier then the average bear. The reason I ask is that I am a home health nurse dealing with the elderly and when my husband started showing symptoms I was clueless as were his doctors. It is amazing how ill informed about dementia we are until we have to deal with it.
Stephanie, you said that your husband doesn't realize there's a difference between early- and late-onset AD. From what you've told us (I did read all the way through), there isn't any difference as far as your husband is concerned.
AD shouldn't really be broken into early- and late-onset -- that is causing all sorts of confusion. It should be broken into sporadic AD and familial AD (aka inherited aka dominant).
Sporadic AD mostly strikes in older people, but it can develop in much younger people as well. Young people who develop sporadic AD follow the same course of the disease as older people who develop so-called "late onset" AD. (The very first person diagnosed with "late onset" AD was, if I recall correctly, 51 years old.) The disease is no more likely to progress quickly in young patients with sporadic AD than it is in older patients with sporadic AD.
"Familial early-onset AD (eFAD)" is inherited. The mutations which cause eFAD are dominant; this means that, for a person to develop eFAD, at least one of his parents must have also had eFAD. There are something like 140 mutations to one of three genes that can cause eFAD. The specific mutation can determine the age at which the disease starts, and some of the symptoms that are most likely to develop. Some eFAD's can progress very quickly.
So your husband may linger in the earlier stages, just the way his father did.
Stephanie, welcome to the AD info line. like many who read but chose not to post often or never, there is so much info on this website, and we all thank Joan for her time and effort and fustrations keeping us grounded and in touch with others who suffer the journey of our spouses. its alarming to me how many new members with EOAD. Your plate is indeed full with spouse, aging mom, career and home. glad you chose to come out and post again its comforting to know others can offer advice and support. divvi
Yes, Indeed! Welcome Stephanie. Its interesting that in 2000 when we first began noticing differences and my husband was nearly 60, the drs. discounted most of what we said because he was TOO YOUNG. Is it my imagination or is it now possible to reach a diagnosis earlier? Have doctors possibly been better educated in these things?? At any rate, welcome.
Welcome Stephanie, As I have said, way too many times lately....so sad that so many new folks have a need to come join our group. I am sure you will find everyone very helpful & kind. My husband also was told he was too young for AD...memory problems started at 50 he is 57 now, all test were not consistent with AD. I felt I was on a roller coaster, one minute knowing from all his symptoms that something was terribly wrong to thinking at least he doesn't have AD. Even though his memory declined each year. Well, they were correct he didn't have AD, however, this summer after another PET Scan he has been diagnosed with Frontal Temporal Dementia. My husband's maternal grandmother & mother both passed away from dementia, they were not diagnosed by a Neurologist, due to denial from my father-in-law. They both were much older than my husband when they started showing symptoms.
Thanks so much for your warm welcome. It is sad that this type of bond must be formed. I'd much rather be meeting you all under any other circumstances. I don't have a huge support system, but the few I have are wonderful people, they just have very full plates themselves. They try very hard to be there for me, but you all help on such a different level.
Bluedaze...I don't think I was as sensitive to dementia issues before my husband was diagnosed, even though I have had elderly relatives over the years who have had related issues...but I think I am more sensitive to it now. When other friends or clients talk about certain behaviors, that little bell in my head can't help but tinkle sometimes. As I listen to them, I can't help but run through the symptoms in my head.
Sunshyne...thanks for this info...I have never seen this explanation in my research. Most all of the research I have seen indicated a faster deterioration and shorter lifespan for EOAD. Even with the medication, I do find my husband is deteriorating rather fast. When I track back to the time when I first started noticing the "little things" to the diagnosis to now and compare this to the info about the stages, well...it just seems fast to me compared to the stories I hear about people having this disease for 15+ years. Initially, I thought my husband was having TIAs or gearing up for another stroke. Initially, the medical professionals said it wasn't AD because he was too young, even though his father has AD. The best we can tell his father was diagnosed at age 79, but my husband's step-mother was, and still is, in denial and never told anyone. We discovered it on own in regular visitation with him. All of the children/spouses began to compare notes. We have since learned that at least one maternal uncle and a maternal great-aunt died from AD/complications. So he has family history on both sides, including one parent, plus his other health issues.
Kadee...when you used the word "rollercoaster", I couldn't help but have a very therapeutic meltdown cry. When other people ask me how I am, that is usually the word I use to describe my life...I am hanging on to the rollercoaster with white knuckles.
Stephanie, having other relatives with sporadic AD means very little ... having it "run in the family" means that the likelihood you'll develop sporadic AD is just slightly higher than it is for anyone else.
Sporadic AD is very unpredictable. The average lifespan from onset of symptoms is a little over 8 years, but can range from 2 to more than 20. Often, progression is a series of declines and plateaus, with the patient holding steady for a while, then slipping, then holding steady again. Generally speaking, the early and the late stages tend to go more slowly, the mid-stage a bit more rapidly.
But as everyone here will tell you, when you've seen one AD patient ... you've seen one AD patient.
I imagine other health issues may affect the progression. The depression may make it appear the disease is moving more quickly than it actually is. Depression can cause a "pseudo-dementia", that is, it causes the symptoms of dementia, but if the depression can be successfully treated, the symptoms are also treatable. So having depression on top of AD is a double-whammy, so to speak, but hopefully treatable if you can find the RIGHT med.
There is also a very close link between diabetes and AD -- close enough that AD has been called the "diabetes of the brain" or "Type III diabetes". I think some people are looking into intranasal insulin as a possible treatment ... yes, NCT00581867 (this is only recruiting at the University of Kansas Medical Center) and NCT00438568 (only at the VA Puget Sound Health Care System).
A different trial (NCT00570050), which is not on AD itself, states: "It is hypothesized that intranasal administration of insulin will enhance hippocampal-dependent neurocognitive performance in euthymic individuals with major depressive disorder. This novel initiative represents a proof-of-concept study that insulin is salient to neurocognitive functioning in major depressive disorder; it also represents a novel and safe therapeutic avenue. The available literature suggests that the acute administration of intranasal insulin enhances cognition in memory-impaired older adults with either Alzheimer's disease or minimal cognitive impairment. Prior research demonstrates a cognitive enhancing effect of insulin within one hour of the first intranasal insulin dose. Other studies suggest that the long-term administration of intranasal insulin (i.e. over eight weeks) enhances memory performance in human volunteers. We aim to evaluate the acute and long-term effects of intranasal insulin administration in persons with major depressive disorder. As such, the neuropsychological testings will be conducted at three time points: the week before receiving insulin, within one hour of the first dose and after eight weeks of insulin administration. "
There's also a study to determine whether using Metformin to lower peripheral insulin in overweight patients with amnestic mild cognitive impairment (amnestic MCI) can decrease the risk of cognitive decline and progression to AD. And another on rosiglitazone, which they say is an "insulin-sensitizing" medication, to improve the attention and memory skills in MCI patients.
I wonder if the diabetes is not as "under control" as the doctors think. Have they talked to you about this possible link? I forget, has your husband seen any super-duper specialists who are conducting research in this area?
Rollercoaster is a great metaphor! My DH was diagnosed 2 years ago with MCI and 15 mos later with Mod to severe AD. That was fast. I had known for at least 3-4 years that something was wrong. Just couldn't put my finger on it. Oh, I should correct that--in my heart of hearts I knew. I just didn't want to admit it.
You've come to a good place. There's lots of information here. You have so much to deal with now. It's important you take care of you before you try to take care of your DH. Blessings!
This is incredible info on this intranasal insulin hypothesis. It does make sense, especially when you consider how the PET Scan works. My husband has been on Metformin for years. His blood sugars, when I can get him to take them, hover between 88 and 102. He rarely takes his readings anymore. About once a year the insurance company keeps issuing new, updated monitors thinking they are doing us a favor. I don't think he can figure out how to work the new ones. After his stroke, we both went on a major lifestyle change with diet, exercise and the attitude change that "food was merely fuel". Very hard to do in south Louisiana where fabulous food is a major part of our culture. He dropped 125 lbs in the first year. After about another year, about the time his "little things" symptoms began, he started straying from the food/fuel philosophy. Since then he has gained about 65 lbs back. Since his diagnosis, he has lost some, but he continues to lose impulse control and now eats whatever he wants in whatever portions he wants. I can only control what I cook for him and what we keep in the house. I simply cannot control what he does when I am not around. This is where I pick my battles. We do go to a major medical center in New Orleans and he does have a barage of specialists. I don't know of any treatment trials in our area, but we are due to go to the doctor next week and I will inquire, especially about the intranasal insulin study. Thanks...
Stephanie, if they aren't familiar with the trials (or the rationale behind them, etc) and want contact information on the Principal Investigators, let me know. I can often dig up stuff like that.
Stephanie, I am also new to this and was amazed at how much we have in common. I am an employment specialist working with the same population. My husband also had a stroke, but unlike your husband there is no known Alzheimer's in his family. He had an accident at 33 and had TBI. He was an engineer for 25 years and gave it up also when travel, stress and the work became overwhelming, that was 4 years ago. I think that was the beginning. He started testing 2 years ago at 56 and it was confirmed 9-months ago and we believe he is in stage 4. He also took a job that he enjoys just to be busy and told his co-workers who are very supportive. But his work is declining and I wonder how long they can keep him. I also think his decline is quick. Life does feel like a roller coaster. And this week was rough. I also appreciate this site and all the support here.
Sunshyne...I'll know more after next Friday's appointment. I really love our Primary Care Physician. She is the best doctor we have ever had. I really credit her with Glen's remarkable recovery from his stroke. It was as if she cared as much about his recovery as I did. I know her first appointments begin at 7:30 am and she has called our home at 7:30pm (and once she called on a Sunday afternoon) to follow up on changes she made in his medication just to make sure things were ok. I am not as impressed with his other doctors, so anytime I need information or would like to explore something new, she is the one I go to. If she is not familiar with any of these, I will let you know and get the info.
Gerry, it is sadly amazing that our lives have paralleled so much. I am particularly empathetic regarding your husband's TBI. These are particularly difficult. I can't imagine what you face daily with a stroke, a TBI and AD at such a young age...so cruel. My thoughts and prayers are definitely with you.