I am a new spouse dealing with potential EOA which started with Expressive Aphasia (the inability to speak in full sentences - just a word here and there). Usually Aphasia is caused by a stroke, brain tumor, brain infection etc. but the MRI didn't show any of these problems, so my husband has been sort of diagnosed with Early Onset. He is 64. He has recently exhibited other signs of cognitive disfunction. Losing keys, repetitive actions - sort of like obsessive compulsive behavior. He is losing weight fast even though the blood work and physicals don't show any problems. Has anyone experienced anything like this?
Hi Dilly, I also have a husband with EOA. He doesn't have the aphasia but weight loss was one of his first symptoms. He wasn't remembering to eat. I didn't know what was going on and was of course assuming that he was eating, he was always so independent. Once I started making sure he ate, he put some weight back on. He would say he wasn't hungry, but when I put food in front of him he would eat it. And yes, he also has the repetitive actions...started with losing his cell phone, his glasses, pouring a drink and walking away from it, leaving cupboard doors and drawers open, obcessively thinking about going to the grocery store. Welcome to this site, there are great people here.
Thanks for your comments. I have taken him to his mother's for a week so that I can remove the vehicles before I bring him home. He backed out of the garage into a friends car, then he knocked off the side mirror backing out of the garage, then he skidded off the road on an icy morning into a ditch. Luckily someone found him and brought him home since he basically can't talk. Last week when I got home the car was missing so I took him with me for him to point out where the car was. Luckily it was at a local store where he could walk home but I got scared because if he was futher away and he couldn't walk home, how could he tell anyone or call me. He wears a medic alert necklace but no one would see it under he clothes. I'm very concerned about is reaction when I bring him home this week end and he sees the car and truck gone. I will have to hide my keys since he goes into my purse to look for them. When I try to explain he doesn't get it. We had the plumber here to fix a leak and he left to get a part and said to keep the water turned off. Husband went immediately downstairs and turned it on. I told him not to because it would flood the bathroom. He went back and turned it on again. His family is taking him to a Chiropractor with a diplomate in Neurology who believes that his neck/back problems are blocking the blood flow to the brain and he has told them that husband does NOT have Alzheimers. I don't care what you call it - there's some form of dementia that is just getting worse. I have to work so when I get him home and leave it will be a MAJOR adjustment for him and I'm very concerned. I've taken him to the best neurologist in the area and he's taking MRI's for comparison and for lack of anything else he has him on Alzheimers meds - the neurologist has him squeezing a ball with his right hand to stimulate the left side of his brain. This is just some of what is going on.
What is it with the grocery store obsession - in and out in and out back and forth. While he is gone my daugher, her husband and I cleaned out the fridge and pantry (he always did all the shopping and cooking since he is retired) and it was discusting - and overflowing.
You are all making ME feel so much more sane!! My husband brings home tons of stuff from the grocery store and it sits in the cupboards or fridge and often spoils. He leaves cupboard doors standing wide open, he forgets to lock the doors of our home, if he takes a phone call he paces constantly while talking, he jumps up in the middle of meals and walks out of the room or wanders in the kitchen, I find partly filled glasses of water in many different places, he loses his keys, checkbook, forgets to put a belt on, or zip his pants. BUT he goes to work every day! Regarding his speech, he often calls things a "deal". I have to guess what we're talking about when he comes to me and says "I can't find the little deal", or "do you know where my deal is?" He's only MCI so I can only imagine what the future will be like.
Just thinking, I am very baffled that your husband would still be going to work in this demented state. How are the Doctors allowing him to continue to work? I would think they would be suggesting disability. He does sound like he might be in stage 4 of the Alzheimer disease and maybe a little of stage 5.
I know the family is the last to recognize this, it happened to me, my dear Jim was in stage 5 before I even knew anything was going on. Please do check into his disability for work.
Dilly, the aphasia is definately a symptom of Alzheimer disease. My husband started with not being able to talk in full sentences, just words here and there and it gradually progressed into full aphasia, not being able to speak except gerbish, words that and jumbled and make no sense.
My husband started this about 2 years ago and has been unable to talk for well over one year. He is in stage 7 of the disease.
I've tried to talk to him about work, but he has his own company with several family members employed, and they hired him an "assistant" about 18 months ago which made him very angry. Also, he has finally agreed to early retirement in about 4 months. Additionally, as I said, he is officially only MCI as he scored so high on the neuropsych testing, even though he couldn't remember the doctor's name or location when we went back to get his results. So I doubt his doctor would qualify him for disability.
Jane, you are the first person I have heard that has dealt with the Aphasia being the first symptom (or the first one I noticed) and everyone tells me its not AD. THis has been going on for about 2 years also. How many stages are there? Is he still home with you. I'm taking the cars away because if he gets stuck or can't start it - he can't tell anyone or call me. Please tell me how you've been coping. Also what does MCI stand for?
Dilly, I am not Jane but I can answer a couple of questions for you....There are seven stages in the progression of AD....you can google that and get some really good info.
MCI stands for mild cognitive impairment....which can be a precursor to the development of AD.
Thank you Sandi - I've read a lot but have been in denial. The aphasia aspect complicates things so much. Plus the family think the Chiropractor can help him by exercises and releasing the tension in his neck and back. I only wish.
Now I understand why we have so much of one thing when he goes to the grocery store. It is just the two of us and he brings back so much sometimes that I have to eventually throw it away. Shopping was never his thing - or spending money, but things have changed.
Dilly,I feel for you in having to make these quick decisions after your husbands accident. What is so hard is that they can be aware in so many things and get upset about them when they are so deficient in other ways. My E has had EOS for about four years now and the words are just now becoming more the problem. Driving was the WORST of all issues to deal with as he used to race, so he thinks he is the BEST ever driver!! Yet he can't even put on his seat belt most of the time without help. I drive his truck some to keep it running but I get lectured about it every time I do. He hasn't driven in over a year now but he always tells me he is getting better everyday (though he is not!) As far as shopping, we end up with tons of bottles of Gatorade. Though I tell him we have 12 bottles at home, I will find another slipped into the buggy when we shop!
Dill, I did not mean to imply that the aphasia was the first symptom my husband had with this disease. He has had the disease for 8 years, he has only had the complete aphasia for the last 2 years. He started with the trouble finding words about 4 years after diagnosis,then less and less words and finally the aphasa. I would have to wonder with the aphasia being the first symptoms noticed that he may have had a stroke. My father had these symptoms, went to bed one night fine, woke up the next morning could not speak and no other signs. He had a stroke. Could never talk again.
I have a gut feeling that your husband suffers from something other than Alzheimer's dementia...His aphasic speech was so global abruptly that its onset doesn't sound like any manifestation I have encountered with people I have seen with Alzheimer's. Did your husband have a fall or other i njury to his head before his expressive aphasia? I really think your hu sband is in nee d of further neurological testing . Can you contact a university in your area doing research in the area of dementia and ask what they can suggest? Also perhaps you need to keep getting other opinions until you can get a definitive diagnosis. I am no doctor and I may be alerting you mistakenly but something appears insufficient in their conclusions.
Thank you all for your responses and support. My DH has had 2 MRI's - no sign of stroke, tumor or any other brain infection. That's why it was so baffling. It took me a long time to even find out about Aphasia. Once that was diagnosed, primary sent us to 1st neurologist who said it didn't matter if it was primary progressive aphasia or AD - same meds. We went to another neurologist who is ok with the PPA diagnosis but feels there are other cognitive problems and doesn't have any other answers other than staying on the AD meds and monitoring the progress (lack there of) every quarter. No one has an answer. So whether it is AD or PPA with another form of dementia, what really is the difference? No one is telling us to treat it differently. Now the family has a lot of faith in this Chiropractor who is attempting to stimulate the left side of his brain. Not that it can hurt but he's out of state and I have to bring DH home Saturday. All *&*( will break lose when he realizes the vehicles are gone and he won't be driving. I'm very anxious.
o Comment Author Dilly o CommentTime 4 days ago edit delete Carewife - I was interested in your comments regarding the Aphasia which my husband has and for lack of a better dianosis he 's on the neds for AD. He is now developing cognitive problems and obsessive compulsive behavior. His mother's chiropractor has told her he does NOT have AD but a blockage of the blood to the brain. The neurologist is assuming EOA. Not being able to talk has caused the additional worry of him being in a situation (car or otherwise) where he can't tell me or anyone else where he is or what the problem is. Please let me know what other avenues there are to explore this horror.
o Comment Author pollyp53 o CommentTime 14 hours ago edit delete Dilly,
My husband with Alzheimer's has aphasia and is obsessive compulsive and has many cognitive problems. My husband presented with aphasia first, then the short term memory went, then the obessive behaviors and cognitive problems kicked in. Unfortunately, it has been a steady decline despite on two medicines, Aricept and Namenda that he has been taking since 2006. I am waiting for a plateau but I really haven't seen one.
My husband has a lot of atrophy in his left temporal lobe and some on his frontal lobe. The Dementia Clinic where I live teaches us that the younger the patient is the faster this disease tends to go. It has been happening rapidly for us. I first started noticing symptoms when he was 57 1/2 to 58. Yes, this indeed is a horror.
o Comment Author Dilly o CommentTime 7 hours ago edit delete Brought DH home on Sat - saw the Chiropractor on Friday - he's convinced he can help him - I only wish. Unfortunately he is out of state and he's trying to locate someone locally with Chiropractic Neurological training to no avail. The vehicles are gone and so far so good. Of course Ihad to take him to 6 stores yesterday. The real test will be tomorrow when I go to work and he'll be here without a car. It's very frustrating to think there may be help but no one tells you about exercises to keep the left side of the brain stimulated except this Chiro. Any thoughts from anyone? 4.
o Comment Author carewife o Comment Time 7 hours ago edit delete Dilly; YOu indicated that MRI shows atrophy on the speech area of the brain so the aphasia is apparently linked as a result of damage to that area, I cannot tell you if or who the medical field can be with the knowledge to help your husband. I do know the aphasia is not an entity unto itself but is a verbal resul t of some cause. Has the chriopractor had other patients with the same diagnosis that he has been able to effect improvement and/or cure. What doees he base his therapy on? YOu might want to get on the internet and research aphasia and its connection to brain damage. Perhaps someone has written a paper about this subject. I do know the brain is very mysterious and its damage causes a myriad of results. KEEp trying t hough to find help for your husband , you will p revail I am sure!!
o Comment Author carewife o CommentTime 6 hours ago edit delete Dilly, I judtlooked up "aphasia and its cause" ONMY browser and found an article on progressive aphasia from Mayo clinic. It is a rare neuerological disease resembling the symptoms you have written on your husband. Look it up or if you give me your e mail address i"LL forward i t to you.
o Comment Author Dilly o CommentTime 5 hours ago edit delete Thanks Carewife, I will check out the Mayo article. I have done extensive research on PPA but most stay it is caused by a stroke, tumor, brain infection which the MRI's don't show. Unfortunately, whether the atropy to the left side of the brain is just PPA and not AD, the progression of it is causing similar symptoms, short term memory loss, OC behavior etc. It's so hard not knowing what he needs or wants due to no communication. Writing is decipherable also. Thanks for your input.
o Comment Author Dilly o CommentTime 5 hours ago edit delete Just checked out the Mayo info about Aphasia - no known cause, no cure, only gets worse. What can I say.
o Comment Author Dave S o CommentTime 5 hours ago edit delete I am a little confused. Do a search on Semantic dementia. This may give you an answer you are looking for.
Yes, I am very aware of semantic dementia. My husband's diagnosis on October 20, 2006 is Alzheimer's with a heavy semantic dementia component. He calls telephones keys, he calls purses cell phones. Hence the definition of semantic is, pertaining to, or arising from the different meanings of words or other symbols. It is getting a lot worse and communication is getting really difficult. Sometimes I know what he means because he repeats the same story so much. THe Alzheimer's Disease is evident by the fact that he can't put things together anymore (Executive function of the brain). He was a main frame computer troubleshooter and now he can't even figure out that you can't fill up the above ground pool without a pool liner. His short term memory is so bad that he asks the same question 50 times. Thanks for listening. I needed to vent.
Dave, thanks for your comments, I checked out semantic dementia which took me to frontal dementia and again to non-fluent alphasia - same ol, same ol, tired of no answers as I am sure everyone here is also. Heartbreaking and no end in sight. I do appreciate your concern and direction. I've searched and searched for some type of help. Dead ends. Maybe DH just needs relaxers or maybe I do - actually I have some but have not taken any - just have them as a parachute for when I'm ready to jump off the cliff!
Polly, was your husband's first symptom the aphasia? Can he still drive? My husband put the battery in backward and blew all the fuses. He used to maintain our cars and now had a hard time starting one the other day and had to walk home. At least he was within walking distance. That's what scared me so that I removed the cars - I was afraid he'd be too far from home to walk and wouldn't be able to tell me or anyone what the problem was. Again, he has a medic alert necklace and a note in his wallet but who's going to stop for a man walking in the freezing weather?
o Comment Author pollyp53 o CommentTime 38 minutes ago
My husband's first symptom was aphasia and the inability to know placeholders of numbers like the difference between 1,000 and 10,000. He also did not know how to say the words for colors. This started in about mid 2005. Yes, my husband has tried to wire things in our pump house (we are on a well) that would have caused a lot of damage. The neighbor bailed him out. I hate to say this but your husband should not be driving. In California the laws are very strict on that. Once your loved one gets a diagnosis of any type of dementia, the doctor notifies the Dept of Health who then notified the Dept of Motor Vehicles. My DH got the diagnosis on 6/16/06 of rapidly progressive dementia and it was at that time that the doctor notified the Dept of Health. It takes 8 weeks for them to catch up. I let him drive until 8/14/06. It's not a good idea because with this disease they have slower reaction times. We may get to the point where they might step on the gas instead of the brake. My husband calls red lights green and green lights red. It's too risky. I have hidden all of the keys. After husband fell from a ladder on 9/24/07 (short term memory forgot to secure the ladder) and landed on the top of this head (by the way, he had no residuals from that fall; he was very lucky), I took the keys out of the ATV so that he wouldn't drive that on our road to go get the garbage cans. I am also going to hide the key to the riding lawn mower now that it runs. Alzheimer's patients and machinery of any type do not go together. I am surprised that some of these loved ones are still driving. I think some of the other states are more lenient. A friend at work whose mother lives in Nebraska still drives and she is further along than my husband with this nightmare.
o Comment Author Dilly o CommentTime 28 minutes ago
Polly, so happy to hear from you - you're the first person who's DH started this horrible journey with Aphasia. I have removed the other two vehicles and have hidden the keys to the car I have for work. THis is the first week-end home without them. I have to tell you this Chiropractor in RI feels he doesn't have Alzheimers and that he can be helped with adjustment to his neck and back (which have been bad for years) and exercising the left side of his brain - squeezing a stress ball with the right hand. Special glasses with flashing lights on the right eye, etc. We don't live in RI and he hasn't yet found anyone in our location to continue the work but he is trying. I told him that after 2 years of denial that he has AD, I've finally accepted it (as much as anyone can) and that I had serious doubts about what he was saying. I asked him why no other neurologist or doctor talked about this type of treatment. He said it was relatively new and that he hadn't dealt with Aphasia but had some success with patients with Parkinsons. I plan on talking to DH's neurologist in March at his next appt. My DH is 64 - how old is yours? Its so lonely without being able to talk to him and to share decisions and joys and sorrows. I missed him so much when he was at his mother's last week, I couldn't stand it and now that he's home we're on the same treadmill. He wants to go to the store all the time. He can say a word or two - he still can say, "love you" but mostly says, "yea' "yea". So lonely without him. How do you cope?
Dilly, I will explain how I started this nightmare. In November of 2005 (it was my 52nd birthday) my daughter and my husband were sitting on the bed in our bedroom joking around. I was at the computer half listening. My daughter would point to things and say dad what color is that? He would guess. She would say dad, What’s 5 x 2 and he would struggle. My daughter said see mom dad does not know his numbers and colors. I said oh crap. I was concerned so I sent him to hisinternal medicine doctor on November 29, 2005. They did a CAT Scan of his brain and did the standard mini memory examination. He scored 29 out of 30 on the standard mini memory exam. The doc told him he had a lot of atrophy on his brain like that of an alcoholic and they patted him on the rear and sent him out the door.
We were going to build a home on the Big Island of Hawaii. I was ready to sign the contract to start building and I said I don’t’ want to do this until I send him back to the doc. My youngest daughter and I went to his internal medicine doc with him on June 16, 2006 so 7 months had gone by since we sent him the first time. They issued the standard mini memory examination again and he scored 17 out of 30. Doc diagnosed rapidly progressive dementia and that’s when the process started to notify the Dept of Motor Vehicles. They placed him on Aricept at that time and referred him to Neurology. He was 58 at the time so they were falling all over themselves trying to help him.
We went to the neurologist on July 6, 2006 and the first neurologist diagnosed him with a frontotemporal dementia called Pick’s Disease. Patients with Pick’s are very inappropriate in public and can do things bizaare. I said my husband is not like that. So I went to a second neurologist and because of the language issues he was having, he diagnosed him with Primary Progressive Aphasia which is another form of frontotemporal dementia. I spent 4 months on the frontotemporal dementia primary progressive aphasia forums. I learned that those husbands and wives don’t have short term memory problems. They just have aphasia. That’s what separates them from Alzheimer’s. I decided since my husband has primary progressive aphasia, I will get him into a study. Well, the study wanted the results of his neuropsych testing. I said to them what's that. THey said 8 hours of testing. When my husband got the results of his 8 hours of cognitive testing in October of 2006, that’s when they diagnosed him with Alzheimers with a strong semantic dementia component because he does not know what things are as well as being aphasic. That testing tells a lot about dementia. If they score low in all 5 areas of cognition, that points to Alzheimer’s. If we didn’t have that test, I would still be wondering. It's when we got this diagnosis that the neurologist placed him on Namenda as well as the Aricept.
My husband is now 60 and I am 54. He started this mess when he was probably about 56 or 57. Now that I look back it has been going on a long time. I have taken some Dementia classes and they say count back as long as 9 years from first onset of symptoms that you notice.
Does your husband have short term memory issues? Has he taken the standard mini memory examination? It sounds like he is really aphasic. My husband knows more than two words.
I don’t always cope really well. I get inpatient because I have to do everything and I get tired. I get tired of hearing the same question over and over. It sounds like your husband can’t form enough words to ask you questions over and over. It sounds like he has some Executive function problems because he is wiring the battery incorrectly. That’s one of the areas of cognition they test for on that 8 hours of neuropsych testing. The real key they told me is if they are struggling with short term memory, it's Alz. They will ask them 3 things at the beginning of the test and ask them to repeat the three things at the end. My husband can't remember something 10 seconds after you tell him.
Feel free to e-mail me at pollyp53@dishmail.net.
I have finally accepted this too as rough as it is. My husband has a ton of Parkinson's in his family. His mom had it at about 51 and his cousin started it at 55. My husband's daughter died of a brain tumor at 28. She just died January 1, 2005. I still haven't gotten over that, now this.
I don't think I would do well with Wayne going away some place. I don't think he would either. How does your husband cope with change? They are very routine oriented. SOrry for such a long post. Glad to have you to talk to.
Polly, thanks so much for sharing your story with me and your email. I appreciate it so much. My husband was given the memory tests by 3 doctors over the past 1.5 years. He did pretty well the last time but not as good as the first couple. He can't count backwards from 100 by 7's and many other parts of the test because he can't get the words out. They didn't think the 8 hour test would be conclusive due to his miniml ability to communicate. He can say a few words but generally only one at a time and not always the one he wants. He can no longer say my name. Today is the first day he is home alone without a car. I worry less obviously about his safety but worry more about his mental well-being. I am 59 and husband is 64 - this has been going on for about 2 years - seems to be progressing more rapidly - deteoriation of speech and writing. OCD tendencies, doesn't want to shower but washes hair and body. Is very considerate but gets understandably frustrated. What does your husband do all day long? Mine watches law and order over and over but does keep things basically straighted up and tends to our two cats. I'm not ready for him to be any place but with me (or visiting Mother and Sister) but I worry about his happiness. I hope we can go on vacation in June to the ocean and have some happy days together. Thanks again for your thoughts, support and sharing. Dilly
Hi. Good to hear from you again. Thanks for sharing your story with me. My daughter and I read your latest post and were very saddened that your husband can no longer say your name.
My husband has a male caregiver that comes into the house every day. He can no longer stay alone. He would forget to turn burners off on the stove, etc. It is too risky for him to stay alone because he does not undertand how things go together and he doesn't know that he is supposed to eat. He needs prompting to eat. My husband would probably not be able to follow the plot of Law and Order. He enjoys shows like I Love Lucy and Andy Griffith. He laughs all of the way through them. He doesn't ike sitting around watching TV. He likes to work outside on our 10 acres, but I can't trust him doing things without my supervision. Lately the caregiver has been taking him to his house everyday which I am glad. My husband does have OCD tendencies. He will stay on one subject and not get off of it. We were fighting him taking a shower for awhile, but now since he gets bored he takes one after I do in the morning because he has nothing else to do.
Have the doctors done an MRI on your husband's brain? If so, did they see any atrophy on the left lobe? Are you working all day and leaving your husband home alone? Where in the US do you live? I live in Northern California outside of Sacramento.
My husband has not been able to count backwards from 100 by 7s since 2005. He can only count to 10 and he can count to 20, but you have to prompt him.
I sometimes can't believe this is actually happening. Don't you just want to wake up and have this just be a bad dream? I am still working full time so I am not with him everyday. Some times I think that's better, but some times I miss him too. I am really torn on whether to continue working or not. What did you husband do when he worked?
Hi Polly, yes DH has had 2 MRI's - they show atrophy on the left lobe. At this point in time, yes, I work and leave at 6:30 and usually don't get home until 6:30 - 7. Long day. Got sick today - low blood pressure - need to go take a nap. My husband was an independent painter - houses, etc. We live in upstate NY - about 15 miles from VT border. Long winter - am dying for spring to come. DH loves to garden and bird watch - that will hopefully take him away from the stupid TV. Although without it, I'm not sure what would entertain him. Keep in touch - as we share this horrible nightmare and search for ways to keep upbeat and maybe share a laugh or two - haven't had the chance to laugh in a while. Did today when my dr told me my bp machine must be malfunctioning because if it was accurate (65/40), I wouldn't have the strength to call his office. Two other associates used it and it registered their's fine. Oh well - it did make me laugh. Take care - Dilly
My wife was 55 and a beloved first grade teacher when she began to exhibit short term memory problems. After a year and a half of being told that it was "normal aging" the neurologist arranged for a neuro-psychological exam. She did so poorly that the psychologist freaked out that she had even driven herself to the appointment. Based on that, the neurologist diagnosed her as having Alzheimer's. He referred us to a neurologist at University of Maryland who eventually referred her for a PET scan. The scan revealed deteriation of the left side of the brain which the doctor referred to as, "abnormally abnormal." The radiologist diagnosed her as having Alzheimer's but the neurologist referred to it as frontal temporal dementia.
The upshot of all of this is that we have found a neurologist at Hopkins who had worked as a speech therapist for ten years before going to medical school. Her primary area of interest is Primary Progressive Aphasia and her diagnosis is that this is a stand alone diagnosis. Other things I have read say that it is a syndrome of fronto-temporal or Picks disease. In any event, it is a dementia but is not Alzheimer's.
I was very interested in the post from pollp53. Her husband seems to have the same symptoms as my wife. Her langauge abilities are severly affected. She can't express what she wants so we play twenty questions or she just takes to the object she is talking about and I figure it out. Today, for example, she took me to her bathroom and I had to go through a litany of questions before she pointed to the light bulb that was burned out. Her understanding of language is limited in that she can't follow a simple direction any more. As far as TV goes, you're right; she can't follow the plot of Law and Order but she'll sit with me as long as we are together. She likes quiz shows like Price Is Right where contestants are excited and happy. She gets a kick out of them.
Despite all this, she is very happy and cheerful. She loves to hold hands, kiss and otherwise show our love. She still does the dishes, takes care of her own hair and makeup and feeds herself, although I prepare all the meals.
Sorry for going on so long. This my first visit to this site and it is great to find at least two people whose spouses have PPA. As mentioned earlier, it is a rare disease and as we all have found out, it is generally misdiagnosed. This doesn't change the fact that the disease is progressive and each year, so far is worse that the previous one. I'm glad that I found this site. Most of the postings on the Alz.org message boards are from caregivers of elderly parents. It is good to be others who are caring for spouses in their late 50's and early 60's.
Hello baltobbob, I am relatively new to the site also and like you have a spouse with PPA and it appears to be also frontal temporal dementia. If you read my earlier postings you will see that he recently went for a few treatments with a chiropractor trained in neurology who believes he can possibly be helped somewhat with some neck/back adjustments and exercises to stimulate the left side of his brain. I figure it can't hurt. Everything about all the loved ones on this site is hard, but I never in life, thought about my husband losing his inability to talk - to let me know how he feels - what he needs - what he wants - and, to realize that if he was in a situation without me where the car wouldn't start that he couldn't tell anyone or even tell me where he is. Scared the heck out of me. Now I'm trying to figure out how to keep him safe but not limit him. Luckily we live in a small town where he can walk to the store, hairdresser, bank and drug store. It's only been one week since I've removed the vehicles from his use, but he's been pretty good natured about it so far. Since I still work he is at home alone and so far is doing good and can take care of himself. I am anxious for spring as he loves to garden and bird watch. Please stay in touch and know that you are not alone. Dilly
Yes, she is Beth Hillis. We found out about her when we took Mary to Towson State for speech therapy. She had been in therapy the previous year and although the therapist was great, she felt that she was not the best person to work with Mary. She suggested that we contact either Towson or Loyola which have graduate programs in speech. The supervising instructor went to graduate school with Dr Hillis and kept praising the fact that she was originally a speech therapist and had a special interest in PPA.
We have been very pleased. She is very approachable and communicates well. We learned more in our first visit with her than we had in over two years at University. I'm afraid that she doesn't have any more of a magic bullet than the other neurologist, so the progression continues.
How do you know Dr. Hillis? Is your wife a patiennt at Hopkins also?
Dave, Small world. That is about the same time as we started seeing Dr. Hillis. Did you participate in the speech study with 20 familiar foods, 20 unfamiliar clothes, etc? We did because I feel that any stimulation is good, although after about two months it became frustrating for Mary. We still use the pictures to do our "speech therapy". She doesn't do well with naming some of them but can when presented with multiple choices. In any event, it gives us something to do together and encourages her when she gets discouraged.
We had participated in a similar study for an undergraduate student at Towson and during that study Mary demonstrated progress with repetition. So, it seems that in the early and middle years of PPA, the patient can learn words. The graduate student at Towson also prepared a communication notebook which we have not really found a good use for other than practice. Dr. Hillis suggested that we get a visual dictionary which we also have not figured out a practical use for. Did she suggest that for you and have you found it useful?
I worked for years in speech therapy with communication boards. It is late, and I am going to bed now, but tomorrow, I will write more with suggestions for you. Also, we have a practicing speech therapist on these Message Boards. I will e-mail her - she may be able to give you some practical suggestions.
Concerning communication notebooks - it depends on your goal. If they are going to therapy to stimulate ability to recall the name of an item and verbalize it, then "practicing" with the notebook may help. If they are at the point that practicing any of it is not going to help, then the notebooks can be useful tools of communication - for your spouse to point to the picture to express their wants and needs. You need to discuss realistic expectations with the therapist or doctor or whoever is treating your spouse.
Check out my "previous blog" section on the left side of the website. Click on #31 -it concerns using pictures to communicate and find where items are located.
Hi Bob, Dr Hillis did not include us in a speech study. She did mention possibly using a notebook to use with words to help communicate with my wife. I had taken my wife to speech and occupational therapists though. We only had 2 sessions with the occupational therapist who agreed that working with her would not produce anything helpful. The speech therapist lasted through 5 sessions when she determined that my wife was too far along in the disease and the therapist could not help her in any way. I tried flash cards to play a matching type game with my wife but she couldn't remember anything. My wife has lost most of her communication and for the most part, you cannot understand anything that she is saying. She also has difficulty putting the correct word with a picture; maybe calling a pencil a fork, etc. I am taking her back to Hopkins in the next week or two for another MRI. Last years MRI showed a lot of shrinkage in the brain and I expect this next one to show more shrinkage. When my wife takes the battery of tests, they offen skip some because my wife cannot understand the directions. Basiclly, we are just living day to day and enjoying whatever we can at the moment. She really belongs in a home but I cannot afford the cost. I am checking with the Department of Aging to see if they can provide any help for me. I have a support group meeting tonight and my daughter has graceiously volunteered to watch her mom for me while I attend. I hope your LO is doing somewhat better and you can spend more quality time with her. Take care.
Dave, It doesn't seem as though our wifes are very far apart in symptoms. I just thank God that Mary is pleasant, loving and compliant with whatever I want her to do. She has deteriorated quite a bit since she had a knee replacement in October. Prior to that, although her language skills were very limited, she had a routine of housework and some computer games that kept her occupied. Her reaction to the surgery was disasterous. During November and December, her personality changed completely, she became very fearful, distrustful and oppositional. She began to wander which scared me to death. On some occasions, she would accuse me of trying to put her in a home ( She had been in a nursing home for two weeks for rehab after the surgery). Other times she would tell me that I should put her away because I don't deserve this. My world was so out of control that my doctor prescribed an anti-depressant and another "as needed" med for anxiety. I think that she had slipped into full blown fronto-temporal behavior due to the drugs.
Anyway, the first of the year all of these symptoms ceased and she is her loving self again. She no longer can occupy herself and the aphasia is even worse. We have become close with a friend who suffered a massive stroke about two years ago. Since his aphasia and Mary's were very similar, we have been going over to his house for "speech therapy" on Monday afternoons. Between his wife and I, we have about a half dozen workbooks and I would just go back and forth between them with the exercises. Yesterday it was obvious that although his word finding is as good as it has been, she was lost and then became upset and her inability to find the words. She gets confused with routine situations. She may try to put her arms in her pants or step into her shirt but if I correct her she just laughs. Just now, she was spooning butter into her soup rather than spreading it onto a cracker with her knife. Hey, if this is worst we have, I should be thankful.
My challenge now is to keep her busy. We do some work from the speech book and I read to her from library books. She likes boy meets girl love stories such as Nicholas Sparks or Fern Michaels. Three years ago, I would read a chapter to her and she would read a chapter to me. Two years ago, she began missing lines in the book, so we switched to large print books and her reading was still pretty good. Now she can't read at all and I suspect that she doesn't follow what I am saying either. She just likes to be with me and hear my voice. Sometimes I will read dialog with a change of voice or with emphasis and she will repeat the funny word and laugh. So something is going in.
Right now, I feel guilty for spending this much time at the keyboard. I need to find her and engage her in something to do. Look, my email is baltobob@comcast.net. It has occurred to me that 99% of the folks on this message board may not be as interested in my personal story. Feel free to email me any time if you want to compare notes. By the way, we are going to Hopkins for an MRI next Friday. The similarities are almost like something out of The Twilight Zone.
PLEASE don't feel guilty for taking a little time for yourself. You need it. We all need it.
I can't speak for everyone, but I like to hear other's stories - it helps us realize how alike our issues are, and that we're not crazy, as so many outsiders seem to think.
Bob, I'm not very good with words so I don't post very often.If someone is not interested they can read just the posts that interest them.I read every post every day,just my way of coping with this situation we are in.GOD HELP ALL OF US.Thanks,Ann
Bob, I am interested in your story also since my husband has expressive aphasia and apparently the fronto-temporal dementia. As with you, I miss being able to talk to my spouse or for him to be able to communicate to me how he is feeling. He has been using a heating pad on his arm (no visual injury or bruise) for 2 weeks. Anyway, we're here to support and share. Dilly
It's great meeting people who are sharing the same experience. A couple of things have occurred to me that I would like to share. When your loved one is in the earlier stages of PPA, language difficulties may distort the normal diagnostic tools. Mary took a neuro-psychological evaluation early on which led the first neurologist to diagnose her as having Alzheimer's. The psychological test is almost entirely based upon language and, therefore, the results are not valid. Likewise, the second neurologist based every visit around a mini-mental exam which also requires good language skills. When you have difficulty naming objects in the first place, how can you be expected to repeat the words that he gave you?
Don't try to assess your LO's progress with the normal stages of Alzheimer's. It may lead you to assume that she can't do things before it really happens. The more that you do, the sooner she will really not be able to do them.
Lastly, try to appreciate what you do have. In my case, my wife is still pleasant and loving. I know how much worse it could be and that it may change at any time. One of the interns at Hopkins commented to me that patients with PPA are frequently more pleasant than those with Alzheimer's. I don't know what to expect when and if she progresses to full blown fronto-temporal, though.
My husband's main symptom is aphasia. He also has some other problems with needing to do things RIGHT NOW and the compulsive desire to buy things that we really do not need. I found what baltobab said about not assessing progresss with the normal stages of Alzheimer's because I've noticed that my husband isn't following most of those normal stages. His ability to talk is much worse than anything else that is going on.
He is still driving. He can go to the store to buy his newspapers (every day) and even go to the grocery store with a list and come back with most of the things on it. He went to the doctor for his blood test alone today. All of those things are in the immediate area. He seems to be able to come home from just about anywhere we drive with no help from me, but he can't follow directions to go to places unless I do them step by step as we are going there.
The doctor did not say Alzheimer's; he said vascular dementia. Is that the same as fronto-temporal?
Hi Starling, You sound like I did 9 months or so ago. My husband can't communicate other than a word or two and then not necessarily in context. What made me stop him from driving was my fear that he would be too far away from home and have a problem and not be able to tell anyone or call me. He has a medic alert necklace and a note in his wallet explaining but he or someone would need to get that information from him somehow. It's been hard since he was always so independent and did so many things for me while I was at work but how would I find him if he had a problem and couldn't get home? He did have a fender bender over the winter and they towed his truck and the police brought him home - luckily - but he couldn't even tell me what happened. So far he's accepted that he can't drive until he 'gets better' but this summer I feel will be difficult since he loves to garden and usually uses the truck to get flowers etc. Just one day at a time. It's so frustrating not to know whats the right thing to do.
Starling, Hi. My wife's mother has Vascular Dementia mixed in with Alzheimers. It is in a different class than Fronto-temporal Dementia. I believe the vascular has to do with the lack of sufficient blood getting to the blood vessels in the brain and is related to having mini-strokes. You should find more info on the http://www.alz.com site.