After reading post and having a friend whose dad has alzheimer’s. I believe my husband age 35 is in the beginning stages of it.
He had a brain tumor removed nine years ago. He also had radiation and chemo.
For the past three years I have seen such a change in his ability to think and reason. He calls things by the wrong names, he is cold all the time, he just doesn’t seem to comprehend things I tell him. He used to love to be outdoors hunting and fishing but all he wants to do is sit in front of the television. He doesn’t brush his teeth and he doesn’t take baths unless we are going somewhere!
He will say things and then tell me I didn’t say that. Last year he told me he didn’t care about me. He sleeps a lot and there is something wrong with him all the time.
His neurologist had him tested by a psychologist to see if it was Alzheimer’s and she said that the results from the test from the year before and this year didn’t show any change, and that he didn’t have it, but I sure see a change.
People that haven’t been around him have even told me, but his mother is so determined that nothing is wrong and I have no support with his family.
The psychologist told me from the start that my husband didn’t have Alzheimer’s that he was too young, but I would like for my husband to go live with him and then see what he thinks!
Ask specifically for someone who specializes in EOAD, early onset, because they will be more open-minded about the possibility due to the past brain trauma.
Michele33, 35 wow. My DH is almost 55, I'm 51, and we're young. Do you have children at home? If so, there is a lot of advice on how to help children deal with his changes, moods, agitation, etc. I have never seen it put in words before, "there is something wrong with him all the time." This is something that I have seen. He has never in the past been a complainer. I wouldn't even find out if he was sick or hurt, if I didn't notice and ask. and now, always something wrong. I get to hear almost weekly that if he divorced me that it would solve his problems. During more rational moments (and there are some) he tells me to please not divorce him or leave even if he asks.
Some who post here can pin point a situation or accident where their spouses problems started. It sounds like this is the case with you.
My MIL is the same way. She thinks that all of his problems are either something else physical or something he can help. She also thinks that if the stress in his life was taken away that he wouldn't have any problems. This is not the case either.
Finally, they are so good at being good and normal when others are around. That's why others don't see what you see.
Michele, did your husband have whole brain radiation (they USED to do that for brain tumors) or did he just have radiation near the tumor site? I doubt if he has Alzheimer's, just the result from the brain radiation. My husband had prophylactic (preventive) whole brain radiation to prevent it from spreading there. Even if your husband didn't have whole brain radiation, they can't help but radiate SOME of the good brain cells. Although your husband is not too young to have early onset Alzheimer's Disease, I think it can be attributed to the radiation. The brain cells go through a steady progressive death after radiation.
So sorry to have to meet you here. Welcome. Prior to your post, I was the only one whose husband was affected by radiation to the brain. If you know what kind of radiation he had, I can help you more. I too thought my husband had Alzheimer's until I found this site. The symptoms are very similar.
Michele, it does sound as if you need to find a neurologist who specializes in cognitive disorders, and preferably one familiar with early-onset. The latter is easier said than done ... you may need to find an AD research center active in the field.
Joan has a link in the menu on the home page, "Find a memory disorder clinic in your area". Contact the ones closest to you, ask about their experience with early-onset.
Many different things can cause the symptoms you describe, and you need someone who will actually check your husband out thoroughly, and get to the bottom of this, not just tell you what they have assumed, right from the beginning, that he does NOT have.
He had 30 radiation treaments to the upper left part of his brain. He was fine until three years ago after our son was born, we have three children. From 12 to 2. Our last child was a surprise but she is such a blessing. Sometimes I feel like I am raising four kids my husband acts like one of them.
This year has been the hardest for me just realizing that things are just getting worse with him. He has a drs apptment in August with the neorologist. The symtoms with him just seem so simular to early signs of alzheimers.
Michele, regardless of the reason for him acting this way, I just wanted to welcome you and say I am sorry to hear of your troubles. I am glad he is seeing a neurologist, but as the others said, try to find one who specializes with EOAD, or as kitty said, someone who knows more about the effects of all that radiation. Keep in touch, Nikki
I know. It does seem so similar. That's how I landed on this site. Do some googling. Suggestions: brain radiation cognitive impairment, brain radiation dementia. Thing is, if it is caused by the radiation, then the typical drugs given for Alzheimer's will not work. I expect that given his medical history, what you are seeing is a result of the brain radiation. I didn't have a clue that the radiation could cause dementia. Not one doctor told me. But once I found this site, and with the help of those here, I did research on my own. Nor did I know that all dementias, regardless of their cause (with few exceptions, reversible) are progressive & terminal. My husband was also "fine" until 3 years ago, but upon reflection, I realized it started a lot earlier than that.
I am not a brain expert, so I don't know what the upper left part of the brain affects. But I'm sure it affects something. Be sure to tell your neurologist about the brain radiation. However, don't expect him to know about the impact. By August, with some research, you will know more than he/she does.
Meow. With an accent. But I think Germans are partial to dogs. Now in Venice, there are thousands of cats. Everywhere. I'm surprised it isn't called the city of cats.
Poor michelle must think we're nuts. She's probably going to a support board for those who have been on the Alzheimer's spouse support board.
Michelle, don't let us put you off. We often deal with the seriousness of our situations with humor.
Actually, Michele, the last few posts weren't in code or a foreign language ... our posts all seem to get interwoven. You just have to read all the latest posts to know what we're talking about.
To know us is to love us. We really do behave like adults, at least part of the time.
I love to see translations of animal noises in other countries. Here, roosters say "Cock a doodle doo" To most Europeans a rooster's crow sounds like "quiquiriquí" (Spanish), "kukareku" (Russian) or "kikeriki" (German).
Dogs say Wau Wau in Germany. (pronounced vow vow)
Bored and need some fun? Find out what all the animals say in the language of your choice:
If the LOs don't have to behave like adults, we don't either. Well, at least not for the glorious few moments we are on this oasis of human companionship.
Michele, please come back and visit with us tomorrow. Or tonight. There is so much information here, so many ideas to think about to help you. Sometimes we get a little silly, it is a great outlet. Way to much of the time, we are way too serious.
I believe bluedaze may have been pointing to the fact that our pets seem to be as much a part of this board as we are... and a big part of what keeps us sane.
Michele, are you a cat person, or a dog person, or (gasp!) neither of the above?
Also, if you feel comfortable posting on it, one of our favorite threads is "Where are you from?" (And even if you don't, you may enjoy reading it.)
michelle33, What sort of testing did the psychologist give your husband? About how long did it last. There are some quick, short tests and a longer neuropsych testing (4 hours or more) that is much more accurate. PatB
trisinger, great site, I tried to send the link to a friend in Berlin but even though the letters matched exactly, when I hit the link that I sent her, it came up wrong. Miau
Thanks PatB for getting us back on track. I remember my first day here. I was in Hell.
Michele, if you can't find a "memory center" look for the local stroke rehab hospital. First of all they are used to dealing with patients of all ages and won't discount "Alzheimer's" just because your husband is young. Second the speech and cognitive therapists there have seen everything, and you can't fool someone who is seeing you for a couple of hours a week the way you can fool a doctor who sees you for 15 minutes once a year. And thirs "memory centers" aren't all that available, but stroke rehab is available all over the country.
If you can find a memory center and get him to it, that would probably be best, but it might be easier to present a stroke rehab center in terms of having strategies to deal with memory issues because of the brain tumor. In addition, if he is early enough some of those strategies might work and even give him his life back.
Your husband is so young that rehab because of brain surgery is something he should already have had.
I need to get the internet at home, but I just put my two youngest children in day care and I am cutting pennies, I am a dog and cat person and believe me I love to laugh. I have to laugh at things to keep from just crying. I am from MS and at the time of the brain tumor there was just one neoro-oncologist in the state of Mississippi.
The test that the psychologist did was just written stuff. Like he would ask him questions and then make him repeat stuff back to him. I probably would not pass it if they did me like that. We stayed there in the clinic for around six hours. He would ask me stuff and then he would ask my husband. I think it was just a waste of time.
The neurologist was worried it was a recurrence so from January to April he had like three mri’s and a t-scan and everything looks good. Since we have been seeing her she always says “You look good” that is her famous words.
Last night he was sick again. He hardly spoke to me and went to bed saying he was just feeling bad. This has become a once a week thing since around the first of the year.
My husband has had loads of testing, since we are enrolled in a longitudinal study at an AD research center and just finished a two-year clinical trial (testing every 6 to 12 weeks.) I've learned several important lessons:
(1) The person who does the testing can have a HUGE impact on the results. This isn't just my opinion, it's been confirmed by the experts at the ADRC. In fact, they try to assign the same testers to a given participant every year, just to minimize the impact of the tester's "style". (It tickled me when you said you probably wouldn't pass if treated like that. I can tell, after just a few minutes of chatting with the tester, whether s/he is going to run into serious trouble with my husband. Anyone who is arrogant or condescending is heading into a battle. And I'd probably react the same way, myself.)
(2) The testing can give some insight into the regions of the brain that are affected, and can sometimes be useful in ruling out particular disorders as not causing the dementia (although not always.) One thing the testing can NOT do is determine how much your husband's abilities to function in "the real world" have deteriorated. Again, this isn't just my opinion -- AD patients who enroll in studies at the ADRC must have a caregiver who is with them most of the time and who will also enroll. The researchers know that the tests provide limited information, and so the caregiver is interviewed every time the patient is tested, to find out whether/how the test results correlate with the way the patient behaves on a day-to-day basis.
(3) Test results can bounce around all over the place, depending on many variables, including the level of stress the patient is under at the time, whether s/he doesn't feel well ... gosh, just about anything, including the phase of the moon. (Many caregivers report that their LOs show cyclical symptoms that do actually coincide with a full moon.)
Which leads me to another point ... you say your husband says he feels bad about once a week. Try keeping a log about what is happening ... maybe you can discover a pattern that will tell you what "trigger" is causing him to feel worse. Maybe you're gone longer that day than other days, a kid next door is practicing his drums, there's a TV show that upsets your husband but he doesn't actually say so, you serve something for dinner that he hates (or that really does give him an upset tummy), who knows.
I'm a little surprised the testing has been all written. They haven't done any neuro tests to see if motor functions are being affected? Testing the sense of balance, ability to touch his nose with his eyes closed, ability to stretch to touch something (which can reveal a tremor), that sort of stuff? There should be maybe an hour or more of that sort of testing, if they're trying to diagnose what's wrong with your husband.
(I'm also surprised you were there for all the psych tests. Usually, they won't allow someone else to be there, for fear you'll influence your husband's responses.)
When my wife had memory testing I was present, but the tester made very clear to me that I was not to give any hints, verbally or by actions. It was very frustrating to see a woman who used to have a photographic memory unable to remember names of animals, etc.
Today I had a new problem. I had my knee replaced about 15 years ago. Yesterday it started hurting when I would stand on it (possibly due to my trying to get back to exercising). This morning I was unable to walk without holding on, which made it difficult to get breakfast. I tried to get DW to help by giving her specific instructions, but it took a lot of work. I must admit that I broke down and cried because of frustration. I'm a little better off now since our daughter found my Canadian crutches and brought them to me. But I still don't know how we will manage the basics, such as getting meals, washing the dishes, etc.
Michele, I don't know if you are northern MS, so you could go to Memphis, or Southern MS, so you could go to Baton Rouge, but both of those cities should have really good neurologist and memory centers, as well as stroke facilities. From what you have told us, your husband needs more help than you have been able to get locally.
One thing that I would like to suggest - if you have not already started doing so, you need to write a journal recalling in as much detail as possible everything that has happened to your husband from the beginning, and for the last few months, go into his not speaking, what he eats or doesn't, any personality changes, his going to bed early... and take a copy with you to a new doctor to review before he sees you and your husband. This will help the doctor determine what other tests might be run on him. Also, I have been told that MRI's don't show AD, but PET scans will indicate it. You said t-scan, and I don't know if this is what you meant or not...
Just a couple of suggestions I thought I would throw in.
Marsh, I'm glad I haven't been present when my husband was tested ... it would be too painful. (Plus, if the tester started being condescending, I'd have trouble restraining myself from socking him/her.)
I am so sorry you're having knee trouble, how VERY frustrating! Can you hire someone from a local home health care company to come and pitch in until you're walking again? Visiting Angels or Granny Nannies or Comfort Keepers?
I wasn’t with him when they did the memory test, I had to wait in the waiting room. They did ask me questions and at one time the psychologist had us together asking us questions. I will start keeping a record of his behavior. My mil just thinks he will snap and everything will go back to the way it used to be, but I just feel as if it is getting worse. He has just gotten worse over the last several years. I feel like his neurologist doesn’t tell me what she knows is coming. I would like to be more prepared for whatever may come. I am pretty sure that the neurologist said it was a t scan, I don’t have a clue what it is. Thanks for all your comments. It has really helped me. I just felt like no one understood what I was going through, but I am glad to have joined your group.
michele I'm glad you found us. Who else could understand what you are going through. Sometimes it might seem like we are going off the deep end-but don't you worry. We are always here when you need us. Fl. bluedaze
Michele, she may have said a "C-T scan" which is the same thing as a CAT scan. For a description on how the different imaging techniques work, the information they can provide, and some examples of the images that are produced, see:
Kitty will be able to sympathize with your fear that the neurologist knows what's coming but won't tell you. Have you just flat-out said that to the neuro?
Develop a list of the changes that you've been seeing, and take it with you to discuss them when you see her.
Welcome to the website. I am so sorry you have to go through this so young. I don't post much, but I read them everyday. I have learned so much from everyone.I will be thinking of you and I hope you find the help you need.
Marsh,
Sorry to hear about your knee. My biggest fear is what if something happens to me. I hope it gets better real soon. Are you able to get to the doc to check it out?
My DH had testing with a neuropsychologist and separate testing from a neurologist. The testing from the neurologist included the balance, gait, touching finger to nose, etc., ordering MRI, PET scan, etc. These would give the neurologist some information as to whether there were physical problems and how they might fit into a diagnosis of various neurological problems (stroke, MS, Parkinsons, etc.)
The neuropsych testing was done by staff in the office of a neuropsychologist and this lasted about 4-5 hours and I was not present for any of this. It included doing some things with each hand, like putting blocks a hole, or moving things around based on instructions. There was also drawing, remembering, etc. As I understand it, this would show if he had less function on the left than right for example, or more problems responding to written instructions than verbal instructions for example.
From your description, I couldn’t tell whether your DH had the full neuropsych testing, or just a series of short tests from a psychologist, that would not be supplying all the information necessary to analyze any problems. For example, there is a short “memory test” that can be done by anyone in about 5 minutes that is sometimes used by various doctors, staff, etc. to either screen someone, or show progression, etc. Some doctors use this (especially family doctors) to determine (incorrectly in my opinion) as to whether someone is impaired (and needs medication or a referral) or is “just fine”.
Your DH needs full testing, by appropriately trained/certified people to accurately come to some decisions on potential problems/further testing recommended/functional deficits.
Sometimes it is hard to know exactly what was done/tested. You’ll find on a lot of our discussions we ask “what was done” and by “what kind of doctor”, especially as some doctors/relatives/social workers, etc. will “diagnosis” something (or declare someone as healthy) without all the information they should have. This is important to make sure you know what you are dealing with; what medicines are appropriate or inappropriate, what sort of disability/services you are eligible for and to have the medical documentation necessary to support those inquiries.
You will find, if you need it, a lot of support, hugs, humor, and suggestions (whether you want them or not) if you visit us. I'm so sorry you are facing such problems as such a young age and with young children. As with most things, there are better times and worse times, but never a good time for somethings to happen. Such is the case with Alzheimer's disease and other dementias. And, having to face and deal with the cancer alone, at any age, is overwhelming in itself.
Know we are thinking of you and offering any support you may need.
Sunshyne and Polly, I have an appointment tomorrow to see the orthopedist who did the knee replacement. He said he will probably inject the knee and that should make it better. We'll see.
I'm glad you are seeing the orthopedist tomorrow. Having knee replacements was one of the best decisions I ever made. I dread the thought of any problem with them. I will be thinking about you and hoping the shot works.
Sorry to hear about the knee;s..... Both my knees are shot from to big a load and Arthritis.. I am currently trying injections of synthetic knee fluid that only seems to help a little.... I;m 60 and my ortho wants me to wait as long as possible but they ache at night and keep me awake..... The real problem I face is that there,s no way I could have my knees operated on for replacements because of Dee needing me for everthing.. My ortho knows my situation ( with Dee ) and wants to try everything he can to prolong having to have them replaced..... Its becoming a real situation cause I,m at a loss what to do..... Dan
Michele, This must be very frustrating for you, and it doesn't help if you feel your doctor is keeping you in the dark. I know for my conditions I tried every local neurologist we had in the surrounding area. I still didn't feel I was getting the help I needed or had a relationship I trusted. So I kept trying and trying... I found a wonderful neuro who is also now our friend.... he saw me through brain surgeries, many other issues, and is now taking over Lynn's care... we have to travel 2 hours one way but well worth the trip! Keep looking until you find one you click with.
Along with the journal, you also have a right to ask for copies of all your husband medical records. It helps you keep track of what has been done and the results. It is also handy for new doctors, and for me at least, to show family that show an interest or have questions. Please keep us posted on what you find out.
Marsh, I too am sorry to hear about your knee, I have to say it is refreshing to hear a man admit he has cried, as well as one who is wise enough to go to the doctor. Best of luck to you and Dan on your knee pain. Lynn has pain in both his knees, but has refused any treatment... some men can be so stubborn , notice I didn't say all men...lol
dandee, if you aren't already on fish oil get on it now. It was my orthopedist that put me on it so we could pull back on the pain meds. I've been where you are, and I know how much you hurt.
The funny thing is that what I needed was minor surgery in one knee and a larger than normal cortisone injection in the second one. And I was on Vioxx for the pain for more than 18 months.
If the injections don't work, the next step is the minor surgery where they clean out the cartilage. It is worth doing if a full replacement is not yet appropriate.