12.10.17 Some Things I Learned About Dementia – Four ways to respond when someone with dementia repeats questions published 01.10.17

Original blog 01.10.17 – People with Dementia may repeat things…a lot

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Alzheimer’s disease and other dementias cause problems with short-term memory. This can lead to repetitive behaviors, like asking the same question over and over again.

Your older adult isn’t doing it on purpose to annoy you, they truly have no memory of asking the first or twenty-third time.

You might be able to answer patiently the first few times, but after hearing the same thing a dozen times, it’s natural to lose your temper. That’s why it’s important to arm yourself with kind techniques that stop the flow of questions before you get too frustrated.

Why someone with Dementia is repeating questions

Repetitive behaviors are often caused by stress, anxiety, frustration, or fear. People with Alzheimer’s or dementia are often unsure of what’s happening, where they are, or what time or day it is. Those are pretty unsettling feelings.

Your senior isn’t repeating questions because they need the information. They’re asking because they’re feeling stressed or anxious and need reassurance.

1. Respond to the emotions, not the words
When your older adult starts to repeat a question over and over, try to guess what feelings might be causing the behavior. If they might be feeling anxious, giving a brief hug or hand squeeze while calmly answering the question may soothe them enough to stop their need to keep asking.

2. Keep your answers brief
It’s tempting to answer a question from a person with Alzheimer’s the same way you’d answer anybody else. But the shorter and simpler your answer, the better. It saves you time and energy and reduces your exasperation when you have to repeat it five more times.

3. Distract with an activity
Sometimes the only way to get your senior with dementia to stop repeating a question is to distract them with something they enjoy. Maybe that means offering a snack or favorite beverage.

Or, you could ask them a simple question to get them thinking about something else, like “The sky is blue today, isn’t it nice?” Another idea is to ask them to help you with a simple chore they’re still able to do, like folding laundry.

4. Escape for a few minutes
It’s tough to keep your cool and not snap at someone when you’ve been asked the same question for the twelfth time. Everyone’s patience runs out at some point, especially if this isn’t the first time it’s happened today.

Sometimes you just need to leave the room for a few minutes. Go to the bathroom, get a quick breath of fresh air, or check your Facebook feed. By the time you come back, you’ll have had some time to cool off and will be better able to handle your older adult’s behavior with kindness.

Bottom line

It’s challenging to answer a question that’s repeated over and over again without snapping or letting the frustration show in your voice. Do your best to stay calm and use these 4 tips to respond in ways that are more likely to make the questions stop.

And if you do lose your temper, it’s because you’re human. Forgive yourself, let them know you DO love them, and take a brief time out to help you stay calm.

By DailyCaring Editorial Staff

Additional articles on caring for your loved one with dementia can be found at Daily Caring at: http://dailycaring.com/.

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Please come back next time when I’ll share more topics about dementia from myself or from this source.  If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s or Dementia), find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

margie-frog

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12.04.17 Some Things I Learned About Dementia – Video Ambulatory EEG and EKG

Monday, December 4, 2017 – I just had a 72 hour Video Ambulatory EEG. Since I had never heard about that before, I looked up some information to share with others that haven’t heard of it either.

An electroencephalogram (EEG) is a test to detect problems in the electrical activity of the brain. Video Ambulatory EEG is considered to be the Gold Standard for EEG testing. This allows the doctor to see any kind of events that you may have while you are conducting some of your normal activities and during sleep. The ambulatory EEG device will be worn for a specific amount of time that your doctor believes will give him/her the best chance to find what they are looking for, usually 72 hours in most cases.

An EEG is used to help diagnose the presence and type of seizure disorders, to look for causes of confusion or periods of unconsciousness, and to evaluate head injures, tumors, infections, degenerative diseases and metabolic disturbances that affect the brain.The ambulatory EEG is video monitored to observe activities of daily living, including sleep, and correlates event data.

This is not my head but since I have too much hair to even see the probes I found this one to show what it looks like with all these things glued to my head!

They also include three small electrodes attached to your chest to do an Electrocardiogram (EKG) It is used to look for and record irregular heartbeats that come and go or happen during certain activities. The test is designed to find out what is causing chest pain, dizziness, confusion or fainting.

Alliance Neurodiagnostics is the company that handled my in-home ambulatory EEG and EKG. A different company monitored the video and data collected from the EEG and EKG.

Okay that’s what it’s all about so this now is my personal account of having both an ambulatory EKG and EEG.

On Tuesday morning Juliette with Alliance Neurodiagnostics arrived at our motorhome with all her equipment. She asked lots of questions and took lots of notes. She went over with me lots of paperwork and things for me to sign.

She laid out all of the items she would need to hook me up.

We brought a chair inside from outside so she could get to my head from all directions. 21 sensors were glued to various specific locations around my head, two on my forehead and two on my chest.

My head was then wrapped with gauze, the wires all taped together

We had some errands to run and Misty’s birthday dinner to attend so I wrapped my head in a scarf.

This is the camera and computer set up in the living room.

The camera in our bedroom.

We can see when the monitoring service signs in because the computer screen comes on and we (and they) can see what they are seeing on the cameras.

I was very thankful when this contraption was removed from my head and I could bathe and wash my hair. They use some kind of putty glue to make the sensors stick to my scalp. To remove them I wrapped my head in a warm wet towel for 10 minutes to loosen them sensors.

The thing I liked the very least was being seen on camera 24 hours a day. Our bathroom was the only place we could not be seen! If some information is gathered by all of this it will be worth it!

We go to see Dr. Morgan at 4 pm on Monday to find out what the test results are. I’ll write about that when we get home.

Ya’ll come back now ya’ hear!

q

11.29.17 Some Things I Learned About Dementia – Getting a dementia diagnosis and getting medical records from Dr. Shamsnia published 4.24.15

Wednesday, November 29, 2017 – If you suspect that you or a loved one has dementia this post is important for you to read.  So many people have asked me how I found out that what I was experiencing was dementia so here it is.

The first step is to make an appointment with a neuropsychologist to have a day or two of neuropsych testing done. My primary care physician referred me to the two doctors below but I don’t think you have to have a referral to see them.

I’ve seen both Dr. Susan Andrews and Dr. Melissa Aubert and would recommend either of them.  They are both in the same office in Metairie. Dr. Andrews had a second office in Covington when I saw her but I could not confirm that she still has that office now.

Office Location: 3925 N. I-10 Service Rd. West, Suite 201-A, Metairie, Louisiana 70002 Phone: 504-455-0109

Dr. Aubert’s E-mail: maubertphd@nolaneuropsych.com

Dr. Andrews E-mail:  srandrews.office@gmail.comm – This was the email she communicated with me years ago but I don’t know for sure it is still active.

I’m not getting any kickback from these doctors for referring people, I just know my experience was great with both of them and want to help ya’ll know where to get started.

The neuropsych tests that they do will show where your brain deficiencies are, if any.  If they find deficiencies they will recommend a neurologist for you to see and will send their testing results to that doctor.  The neurologist does the medical testing and diagnosis.  The neurologist, having the neuropsych testing information, can help them narrow down what medical tests to do.  I’ve had at least seven different medical tests.

Lots of people think they have dementia but if you haven’t taken neuropsych tests and/or the medical tests you really don’t have a true diagnosis.  If you have good insurance it will not cost you anything, so why not know for sure and get what little help is available for specifically what you have.

I don’t know for sure that Dr. Patricia Morgan will be my new neurologist but when I saw her she had her assistant do a few of the neuropsych tests before meeting her.  Questions that I found easy on the original and second neuropsych testing years ago were difficult now. I didn’t know what the date was (I got the month wrong). She told me three words and told me to remember them.  I tried to keep saying them over and over in my mind because I knew  she was going to ask me them again but I could only remember the first of the three words.  She asked me to walk one foot in front of the other which I’ve always done fine.  This time I looked like a drunk taking a test on the side of the road.  That’s from my balance being bad now.  Another test had me close my eyes and put my arm out to the side then trying to touch the end of my nose with it.  I didn’t make it to the tip of my nose but somewhere around my nose.  I think there was something else I didn’t do well but don’t remember now.

I realize that some of what I just wrote is also written below in the original blog from 2015 but I’ve gotten very frustrated trying to know how to make it flow right so I hope you can at least get something out of this.

Finally, currently I’m on day two of a three day at home EEG test to see if I’m having seizures.  I’m sure it’s necessary but it’s a pain to do.  And my head is completely wrapped up in gauze making me look like I had brain surgery.

We are heading to Hammond in a bit for the eye doctor’s appointment we mistakenly went to on Monday.  Hopefully we’ll get Roy’s cataract surgery scheduled for the first eye.

Original Blog – April 24, 2015 –

8756_415836921865239_221735958_nSince I have very little Alzheimer’s info to share and am creeping along in my own dementia journey, I’ve changed the name of the blog to Some Things I Learned About Dementia.

If you, or a loved one, is experiencing mental decline, today’s post may help you find where to start to get help.  I can’t say this is THE ONLY path but it is the one I know so I hope you can learn from this.  I don’t mind opening my life up if it will help someone else struggling and searching for help.

Also, I pulled up my big girl panties and went to Dr. Shamsnia’s office to make a stab (not not at him!) at getting my medical records and my MRIs.  More on that further down!

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10703805_824649437580941_2651549357672239530_nOn Tuesday I traveled to Metairie, Louisiana to see Dr. Melissa Aubert.  She is a Neuropsychologist in practice with Dr. Susan Andrews, who I saw 3-4 years ago.  Dr. Andrews no longer takes my insurance, but Dr. Aubert does.

She was wonderful.  We spent an hour together covering everything I could think of from the last time I saw Dr. Andrews until now.  She asked many questions about my current mental capabilities which allowed me to open up and really talk about what’s going on in that little space up there called my brain!   What a relief that was to have the words coming out of my mouth to someone who understands.

Due to the lack of information I was getting from Dr. Shamsnia I decided to pursue having a new neuropsych test done before leaving town for this years journey to the Northeast.  The10801589_855311604510077_5207705261697921312_n previous neuropsych test results showed specific areas of deficits, specifically learning new things and short term memory.  Having the retesting done will provide a comparison between where I was then to my current capabilities.  I handle things better the more knowledge I have about it.  The unknown worries me more than knowing.

The testing is a day (sometimes more than a day) long series of paper tests designed to show strengths and weaknesses.  Most of the tests involve answering questions or performing tasks. You may be taking some of the tests on a computer, using pencil and paper, or using other objects.

Doctors use a wide variety of tests for neuropsychological testing. In most cases you will take a series of tests, rather than a single test. The tests you take will depend on the particular brain functions that your doctor wants to check. The tests are meant to test your limits, so don’t be discouraged if they seem hard.

The tests I took in 2011 were:

The testing was very interesting the last time I did it in 2011, and I am happy to say they were able to schedule the next one for next Wednesday, April 29th!!!  The testing in 2015 included the following:

I can’t recommend strongly enough how beneficial this testing can be if you have any question about your memory or your mental capabilities declining.  It’s worth a day of your time to have these answers.

Once the testing is done, the Neuropsychologist reviews all the information and her notes from our visit to come up with her final report.

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When I left Dr. Aubert’s office I drove a few streets over to Dr. Shamsnia’s office.  I prayed before I got out of my car and said to myself “Girl you’ve got this!” I walked into the elevator and up to his office.

923515_10151922468590806_2082669326_n Seeing that there were no patients in the waiting room I breathed a sign of relief and walked up to the window.  The nice young lady and the nurse recognized me and I explained to them that I would like to have my medical records including the MRIs which I had been told were sitting on his desk.  They explained that normally they needed a form signed and it took 7 to 10 working days to have the files copied but they would go see what they could do.

I sat down, prepared to wait a while and who gets off the elevator but Dr. Shamsnia.  He looked at me briefly and said hello and went down the hall.  Whew, no face to face encounter!!  The ladies came back only five minutes later with a manilla envelope and my two most recent MRIs on disk.

I asked about the old MRIs and they said they didn’t see them.  I now firmly believe the office has lost my MRIs since several efforts to find them have been made by several different people.  How they could lose big old MRIs I have no idea, but they have.

I thanked them for always being nice and walked out.  The relief that washed over me from knowing I didn’t have to 9808_1100980976594842_8340971622499789430_ngo back there again was overwhelming.  When I got in my car I prayed prayers of Thanksgiving to God for seeing me through this dark time and bringing me out safely on the other side.  Not having to deal with the stress and frustration of working with that doctor eliminates so much of a burden from my life.  Only God will walk through all dark times with us and use it to strengthen our lives.  Only God.

I’ll bring my records to Dr. Vales, my primary care doctor, for safekeeping, until I can find a new neurologist when we return to town next year!  North Oaks Hospital Radiology told me they have duplicate copies of the MRIs that Dr. Shamsnia can’t find so I’ll be having those sent to the neurologist at the appropriate time.

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I just got word from North Oaks Sleep Lab that they have an opening for me to have my sleep apnea test redone TOMORROW NIGHT!!!!  Whoop whoop!  When I originally called to make an appointment they didn’t have anything open for weeks until after we left.  This is again another blessing from God!  I love how He cares for me!

Okay, now on to living life!

Isaiah-41-10

 

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11.28.17 Some Things I Learned About Dementia – My little brain, published 4.10.15

Tuesday, November 28, 2017 – Somehow when this was originally published it was out of order date wise.  I don’t know why a post written in February 2015 wasn’t published until April 2015.  This doctor visit is the same one I wrote about on November 26, 2017 and I don’t know why I wrote two different posts.  This one was written so that friends and family would be aware of potential odd things I might do because of my shrinking brain.  The one on November 26th was to share the beginning of the end of my relationship with this doctor.

Today, Monday, Roy and I went to Hammond to see his eye doctor about having cataract surgery.  We found out when we got there (after waking up very early) that the appointment wasn’t today, it’s on Wednesday at 1 pm.  It was in my phone’s calendar as Monday at 10 am so now we have to go back there on Wednesday…..  This is the doctor’s office that likes our hiding rocks, so at least there were some hidden there today.

My new neurologist, Dr. Morgan ordered a three day EEG which will start tomorrow morning.  I’ll write about that when it’s over and she gets the results.

537410_424890400919640_291293599_nOriginal Blog from April 10, 2015: Hi everyone! Roy went with me to the brain doctor (neurologist) on Friday, February 20, 2015.

I’ll try to keep this brief but informative. I had blood drawn two weeks ago to determine if my blood was low in any

vitamin or other thing that might be causing my brain to shrink. I was hopeful this was going to be the cause, since if it was, I could take more of whatever vitamin or other that it was. However, all my vitamins, thyroid, inflammation levels were normal. Even Vitamin D which the doctor said is rarely normal in anyone, was normal for me. Yay for being normal in something!!

This being ruled out, we still do not know what has caused the shrinkage. He gave me the report he prepared for me which includes the following information: He says I have significant atrophy in my temporal lobe, frontal lobe, cerebellum, and posterior fossa. He also states that he considers me to be disabled because of this and I will be sending the letter to Social Security to go with my disability application.

I pulled up my big girl panties and asked the “is it dementia” question and yes it is. We do not however at this point know what type of dementia it is. He does not feel it is Alzheimer’s.

I’ve looked up what atrophy in each of these brain parts does to someone to know what “might” be in my future. I say “might” because he’s told me to eat brain healthy foods and keep mentally active to help fight against the shrinkage. I will do all of that so right now I’m hopeful it won’t get any worse. That may be my positive life outlook causing me to be determined it will not get worse. I’ll take a positive outlook over a negative doom and gloom one any day. Since we don’t know what is causing it yet, I don’t know how possible it is that eating brain healthy and staying mentally active will stop the progression.

blue imagesSome of the things that atrophy in these specific brain parts can cause are:

Frontal and temporal lobe atrophy – planning and judgment; emotions, speaking and understanding speech; and certain types of movement including muscle coordination, shaking, falling, muscle stiffness in neck and back and eye movements. Further description of these changes are: they may speak easily, but their words convey less and less meaning. They tend to use broad general terms, such as “animal” when they mean “cat.” Language comprehension also declines. They lose their ability to generate words easily, and their speech becomes halting, “tongue-tied” and ungrammatical. Ability to read and write also may be impaired.

Posterior fossa atrophy causes: dilated pupils, eye problems, face muscle weakness, hearing loss, loss of feeling in part of the face, taste problems, unsteadiness when walking, vision problems.

I’m copying this information from websites and some brain atrophy’s have more information than others. This one for cerebellum atrophy was very wordy but here it is.

-Difficulty maintaining normal upright posture, balance, coordinated walking, and running. Unsteady gait, staggering, tripping, falling, unsteadiness on stairs or maintaining balance on moving platforms, such as escalators or boats. -Difficulty with handwriting, cutting food, opening jars, buttoning clothes, sewing, typing, playing an instrument or a sport. –Speech: slurred, slow, indistinct, abnormal in rhythm. Swallowing: difficulty swallowing or choking (especially with liquids). -Blurred vision or double vision. Reading: difficulty moving from word to word. Problems following moving objects or shifting gaze from one object to another. -Patients with cerebellar atrophy often experience unexpected fatigue when performing normal activities. The impaired regulation of coordinated movements may lead to increased fatigue because of the need to expend more effort to perform activities that are no longer fluid or coordinated. -Patients with cerebellar degeneration may have cognitive and emotional difficulties. The cerebellum plays a role in some forms of thinking. Patients with cerebellar atrophy may have impaired recall of newly learned information or difficulty with “executive functions” such as making plans and keeping thoughts in proper sequence. Personality and mood disorders, such as increased irritability, anxiety, and depression, are more common in persons with cerebellar degeneration than in control subjects. blue images That’s about all the information I have to pass along. It is what it is and I appreciate all prayers! I’m pretty determined to not let this stop me from living my life. Our RV lifestyle keeps my brain active seeing so many new amazing things. My faith in God will see me through anything life has to throw at me in whatever form. I have the best, biggest God imaginable who can do anything. If He’s chosen for me to go down this path I will strive to handle it with grace and praise Him all the way! When we get back from many months out west I will have a new form of MRI where they can see into the brain deeper. I’ll meet with my doctor after that to see if he can tell anything more definitive then and also see if it has progressed any. He won’t have the new MRI machine now or I’d get it done now. If you are not a Christian you may not understand praising God in the storms. It’s hard for me to explain but having Him as my Lord and Savior gives me peace and knowledge that He will carry me through all the storms of life, including this one. The words of this song by Casting Crowns are amazing. I urge you to google the song and listen to the whole song. Ya’ll come back now, ya’ hear! praise-you-in-this-storm

 

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11.27.17 Part Two – Another Day at the Doctors published 04.08.15

Monday, November 27, 2017 –  This is part two of the end to my relationship with the brain doctor I had counted on so much. 

 

10396286_830004430448484_7403771438852782976_nWednesday, April 8, 2015 – Part Two

I left yesterday morning at 8 am for my 10 am appointment appointment in Metairie with Dr. Shamsnia. The waiting room was packed (all 25 chairs) when I arrived. It always is.

Like I said in my earlier post everyone is always upset about how long they have to wait to see Dr. Shamsnia, and I’m always his champion. After the four hour wait I was called and the nurse took all my information, blood pressure, weight, the usual. She said Dr. Shamsnia should be in soon. While I was waiting, I heard him twice say he was going somewhere and would be back in a while.

About 1 hour after I was waiting in the room, (now 5 hours into the visit) a nice resident came in and talked to me for quite a while about everything I needed to talk to the doctor about. He felt a new Sleep Apnea study was due, because even after sleepwing at least 12 hours every night I am still tired. Maybe my machine needs to be re-calibrated. We talked about the form I need Dr. Shamsnia to sign, the sleep apnea, the MRI comparisons and how I’ve called his office every couple of weeks to see if Dr. Shamsnia had compared them yet. I also said I need to know what type of dementia I have and wanted to know if there was a newer, better medicine than either Plavix or Aricept. He said he’d present all this to Dr. Shamsnia before he came in. Before he left I asked him (as I had asked the nurse originally) to make sure he has, in his hands, my MRIs to compare.

After another hour Dr. Shamsnia came in with the nice male resident and another female resident in tow. I’m use to that because he’s a teaching doctor and I appreciate that. Doesn’t bother me a bit. He sits down and says “You have a form for me to sign?” I said yes it’s from Social Security, and I explained I sent it in the mail but you said I needed to come in. He made several comments about it, saying “It looks like a legal form from an attorney. ” I assured him it came directly from Social Security to me. He goes over the form, circles yes and no, where appropriate and signs it. He stands up and heads to the door. After waiting 6 hours to see him, and having more things I needed to talk about, I grabbed his arm as he tried to leave. He looked at me and I said “Why are you leaving?” He said “Oh I just need to copy this form.” Thinking he was coming back I let go and then saw him give the form to one of the residents who went to the copy machine, while Dr. Shamsnia walked into the next patients room. I could not believe he did that and since the door was now open I could see the back office activity. When he visited with the next patient about ten minutes and came out I saw the nice resident try to have a word with him about me and Dr. Shamsnia blew him off. He then walked into the next room (there are only 3 patient rooms) with the residents and closed the door.

During the time he was with the other two patients I began to realize I couldn’t take him as my doctor any longer. I rosalyn use 2know my blood pressure, which was 118 over 78 when I came in, and at that point it had to be sky high. I didn’t say this before but when I first saw Dr Shamsnia years ago he stressed that I needed to eliminate all stress from my life or I would absolutely have a stroke. That’s when I put on Facebook that I was at the clinic and if anyone heard I was in jail, it would be for murdering the doctor. Had to let out some stress somehow!

The nice nurse came in the office (thinking Dr. Shamsnia was finished with me, since he’d given her my chart for me to check out) and said for me to go to the front window to get my next appointment. I burst into tears and asked her (very calmly, I don’t know how I did it) to have all my records, MRIs, other tests, etc. gathered for me because if he did not come to see me next, I was leaving and going to another doctor. She apologized to me, as has everyone in that clinic at sometime because of how he’s started to treat patients and his erratic behavior (they didn’t say erratic I did – he’s their boss they wouldn’t want to get fired).

I sat back down in the room and cried uncontrollably. The storm gates had opened and out came the tears. I 10407058_10153007783151718_8439821164716253461_nheard the last door open and close and heard someone say something to him and he came back in. He said, “You want something else?” I said (trying to calm down because I need the information) “I need to know if you have compared my MRIs yet?” He proceeds to tell me that my file didn’t show he has compared them, so he must not have. I asked him to do it now while I wait. He proceeds to fuss (nice word being used) at me saying that he does not take the time to do this for anyone. I said, “But you’re my doctor so who else will do it?” He said it could take hours, and he hires attorney’s to do the comparisons and he guess he just hasn’t gotten to it yet. He goes on about how much money he has to pay attorneys to take care of things. Then he goes on about the form he had to sign, how it’s worded trying to trick doctors. He said he does not sign these unless he can look the patient in the eye and know who they are. When I sent this to him I had just been in the office less than a month before. Okay, I understand that. He has to protect himself. He kept talking about what a wonderful, highly praised doctor he was. That he was well know for giving testimony in court and other things because if the words came out of his mouth they were golden (not exactly those words but the gist) That all of his patients knew that they had to wait a long time to see him but he was worth it. I told him as I was still sobbing that yes, he use to be that doctor, but he wasn’t any longer. My last visit was only 5 minutes and this one was only 2 minutes. I also told him that I needed him to be a better doctor for me and I needed him to explain more to me. He didn’t offer anything, just more self indulgent rantings about his superiority. He said “I don’t do for many patients what I did for you sending the Social Security his physicians report.” I again told him how deeply I appreciated it, but that he never told me the things in the office that he put in the report, and that I need to know more. There was MUCH more said on his part but I don’t remember it all. Except that his tone of voice and attitude had become very ugly.

I had gotten very quiet while he ranted and knew what my next statement would be. I told Dr. Shamsnia that I was going to have my primary physician order my sleep apnea test. I didn’t say this to him Isaiah-41-10but, the only reason I originally planned to have Dr. Shamsnia’s office do the test is 1) because they do those tests and 2) because when I first brought my original sleep apnea test to Dr. Shamsnia he called other doctors quacks and said that he should do it himself. I also very calmly told him that I wanted my files and everything so I could take them to another doctor who I knew would review my MRIs and take better care of me. He starts telling me that most doctors cannot even read MRIs and they don’t have the expertise he has and the years of study and practice that he has. Then he said he had a comparison report in the file. When he pulled it out it was the comparison between my 2011 and 2014 MRIs. Not the old ones when my brain was bigger compared to the newer two, when it is smaller. I pointed that out to him. He proceed to go on about other doctors inadequacies and that I’d never find another neurologist like him. Thank the Lord!!!!

The nice young male resident was in the room and kept putting his hand on my shoulder to comfort me while the doctor proceeded to brow beat me. I was so hurt and upset by this time that I told him I write a blog, and that today’s blog would be about the visit with him today. I told him that I’ve always told people he was a wonderful doctor but in the last year or so he’s completely changed.

Okay, hold on, this next is unbelievable. He proceeds to tell me about YELP and how people rate their doctors on that and other sites. He said, “If you have a bad rating on YELP or others, those companies will come to you asking for money to raise your rating.” He said NO to paying them. Then he proceeds to tell me that in his new building next door he’s setting up a room with a computer with internet. On this computer, patients who like him will be allowed to go in there and enter their positive rating, thus bringing up his overall rating. The audacity of that man. Did he think I would not tell any one about this? The young resident looked floored and knowing that it was the resident’s first day at the clinic I felt so sorry for him, as well as me. I had told the resident earlier what a wonderful doctor Dr Shamsnia had been but that lately things had changed. He was getting to see first hand how crazy this little Iranian man really was.

At the end he finally said he will compare the MRIs, but not today because he has patients lined up until midnight. Maybe tomorrow or later in the week. At that time, no one had found my MRIs and brought them to me and it still hadn’t happened when I left. These are big approx. 20″x 26″ film that do not hide just anywhere.

10993455_821131654621733_4917288774200550534_nLet me stop here and go back to when we were in the waiting room. During the usual long wait conversations, we discovered there were four of us in the room with 10 am appointments and several for all appointment times before and after. When I left, the waiting room was full again with those people who might be waiting till midnight. No doctor should over book four patients at a time. Absolutely unacceptable.

When he rose to leave I told him that I would allow him to review the MRIs (I really need someone to) and will consider my next step. The resident again touched my shoulder and said I’m so sorry. Dr. Shamsnia said I could have my money back for today’s appointment.

The young nurse again came in and started to say something, and changed it to “Is he coming back?” I said I really don’t know, but I have to go. I sat in the room for a moment trying to calm down and then I went down the hall, through the waiting room and when I got into the elevator the tear gates opened worse than ever. I started sobbing so hard I was hyperventilating. I used my asthma inhaler to get me breathing. I’m sure the people in the waiting room, and the people in the parking garage, probably thought I had just received some terminal diagnosis. I really thought I’d die right there by all the cars.

I calmed down enough to make it across the street to my car. Roy wasn’t answering his phone (he had a great reason so I don’t blame him) but Chip answered his. I can’t imagine what Chip thought, but at some point while I was still in the doctor’s office I texted him to pray for me at the doctors. He did pray, so he knew something was wrong. During him calming me down, he said something about the doctor should give me my money back. I remembered I left without doing that. So I went back in, still red faced and teary eyed and walked calmly up to the 10440729_10152842929131718_3051818747705415572_nwindow. The nice receptionist opened her eyes wide when she saw me and I said “He said I could have my money back from today’s visit, and I’d like to have it.” She said “yes mam” and gave me my money back. When she did that she took my hand and again said she was sorry. They all had said they were sorry at some point during the visit, except Dr. Shasmnia. She then said “He’s looking everywhere for those MRIs.” I very nicely, because this was not at all her fault, said “He should have done that two months ago.” And I left.

It’s almost 24 hours since I left, and I am still totally drained from that experience. I will never go to that doctor again and I firmly believe what he did to me was mental abuse. I hope no one I care about, will ever be a patient of Dr. Morteza Shamsnia on Kingman Street in Metairie at Advanced Neurodiagnostic Center and Sleep Center. If you do choose to do so, you’re at least warned.

When (and if) he does find my MRIs and does compare them I will be thankful for that. I have already contacted my primary care physician to have the new sleep apnea test scheduled asap. They are also working up a list of recommended neurologists in this area for me to see. I will interview each one before I choose, because I NEED someone who doesn’t make me wait more than one hour (I think that is extremely fair) and someone who will take the time to know my case and help me through this horrible process of having a shrinking brain like I need them to.

I also should have had a followup neuropsychologist re-testing before now, and I will know more about the current condition of my brain by doing that. I called Dr. Susan Andrews who did the first one, and I found out she no longer takes Blue Cross. What a let down, but her partner takes Blue Cross PPO and we have Blue Cross HMO so they are trying to find out if they can cover me with her partner. I also asked my primary care physician looking for someone else to do the retesting in case that doesn’t work out.

I mailed off the form Dr. Shamsnia signed, this final piece in the current phase of Social Security processing. It is now in the Philadelphia Social Security’s hands where they do the medical review. Hopefully I’ll get a determination from them soon.

If anyone local knows a neurologist and/or a neuropsychologist on the Northshore in Louisiana, and that doctor is great, please let me know. We hope to be leaving here soon for a year, and I now need to get the sleep apnea test done, the neuropsychologist testing redone and a new neurologist on board.

My God is GREATER than anything Dr. Shasmnia could throw at me. Knowing I had His loving arms around me kept me from totally going over the edge. I failed to mention earlier above that during the last two hours, when things were the worst, I read the Bible’s book of Acts on my Kindle. It helped me focus on my God and take comfort from His words. If you don’t know that kind of Love and comfort that only God can give, please ask me to tell you more, I always want to share!

Ya’ll come back now, ya’ hear!

psalms 40 2

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11.26.17 A day at the doctor’s office – yes ALL day! Published 04.08.15

Sunday, November 26, 2017 – I’ve thought a lot about whether to republish this blog post about the second to last visit to my previous brain doctor.  Also the next one about the very last visit to this brain doctor.  I’ve decided to share it again in case it will help even one patient avoid this doctor.  These personal blog posts were shared originally in between posts about other dementia related info.  I’m going to post my personal blog posts in order after this one and will then get to the remaining non personal dementia posts.

 

Original post from April, 2015: TODAY’S BLOG IS ANOTHER OF MY VERY WORDY, LONG BLOGS. I WANT YA’LL TO KNOW ALL THIS AND I AM WRITING IT FOR MY OWN RECORDS. IF I WROTE THIS WHEN I GOT HOME YESTERDAY IT WOULD BE MUCH LONGER (HA!) AND MORE EMOTIONAL. A GOOD NIGHTS SLEEP HELPED THE EMOTIONAL PAIN SUBSIDE SO I’M TRYING TO KEEP THIS FACTUAL.

Tuesday, April 8, 2015 – First let me say Happy 36th birthday yesterday to our oldest son Chad. Second, a big Happy Birthday to my sister Harriett Roussel!

Dr. Morteza Shamsnia is my neurologist whom I’ve seen for about four years now because of my brain. He was highly recommended by Dr. Susan Andrews, a Neuropsychologist. I went to her after having some odd symptoms of memory loss. She did a very extensive day long test and two separate meetings with evaluations. She determined that I have significant deficits in new learning and short term memory. They were very much in the abnormal range when compared with my overall IQ. She told me all about this brilliant neurologist who used cutting edge treatment and technology and that I’d be so lucky to see him.

I made my first appointment and after he did at least 5 different brain tests he concurred with her finding and said that the deficits were being caused by multiple TIAs and brain atrophy. Visits for the first few years were fine. He was highly recommended and even though I thought he was a little eccentric when I met him, I liked him and felt very blessed to have him as my doctor. I think I even wrote nice things about him in previous blogs. He deserved all of them (except I mentioned nothing in my last one – about my visit there – about his bad behavior.)

There was a 2-3 hour wait every visit the first few visits, but you got to really talk to Dr. Shamsnia and I left feeling better. The last year or more the wait got to 3-4 hours with less and less quality time with the doctor. I saw physicians assistants, nurse practitioners, and residents many times before finally seeing the doctor. However, when I saw Dr. Shamsnia finally it was like I had never told the first ones I saw anything because they didn’t pass it along to him or either he didn’t listen if they tried. I say that he didn’t listen because I saw it first hand yesterday.

During the four hours I sat in the waiting room yesterday, everyone complained about the wait. This always happens but I’ve learned over time just to use this as a time of rest. I bring a snack and my Kindle and read or watch TV during the wait. The ladies next to me were complaining and I assured them he was worth the wait and they agreed. When I left his office I had been there 6 hours and 30 minutes. This is unbelievabl,e but it’s not why I will never go to him again.

You need to know about the wait because no one should ever have to wait that long. Though for a doctor who knows your case, seems to care and spends the time needed with us I’d do it every time.

The visit before last (two months ago) Roy came with me because I need Roy to understand what is going on with my brain. That visit was only 4 hours long but Roy got to meet my crazy little Iranian, but I always give someone a chance regardless of past bad experiences and I don’t stereotype people.

At the doctor’s previous request I asked North Oaks Hospital (here in Hammond) to dig back in their storage vaults for any MRIs I had 20 or so years ago. It took them a while but they got them all. A really heavy thick folder of every type of CT, MRI, Mammography I’ve ever had. I pulled out the two MRIs. One from when I had the first TIA 25 years ago, and then another of my head and neck when I had a tumor removed from behind my ear. I brought them with me along with the CD I recently received from an MRI in December 2014 and one in 2011 when I first began seeing him. HE ASKED ME TO DO THIS, remember this. This was back in the days when he was a good doctor for me.

The Nurse Practitioner that had been in several times kept saying how sorry she was that we were waiting so long. She said she’d let him know exactly what we need but never was given a chance to do that. You can see their office area when in a room with an open door. By the time we saw the doctor he (the doctor) was trying to get out of the office for the day to catch a plane. The nurse practitioner had already told us that all my vitamin and mineral levels were great from the blood work. Dr. Shamsnia spent maybe 5 minutes with us and said he didn’t have time to review the MRIs from 20 years ago to the recent two MRIs I had in 2011 and 2014. I asked if we could do some test to determine what caused my brain to atrophy since it wasn’t vitamins and his response was “You want a test that can cost $500,000 to run and you will no nothing after that.” He told us he didn’t have time to take care of what we came for that day and he left. His words exactly but he did have time to tell us how very busy he was and all the things he took care of – all non patient related.

I thought Roy was going to run after him and punch him but he restrained himself and we went home knowing only that I have dementia (only because I stopped him from leaving and asked the direct question) and that he doesn’t know what kind of dementia it is. He gave me the report he prepared for me for Social Security and I thanked him profusely for doing this since I knew the importance of what he had to say. I learned more from the report than HE HAS EVER TOLD ME. The total extent of what he’s told me the last three visits is – you have dementia, your brain is really shrunk – and that is it. Everything else I’ve learned has been from the report and looking up phrases from the report on the internet.

Can you begin to see how especially frustrating and awful this is for someone whose brain is significantly shrunk and who has lesions in her brain from having multiple TIAs. However, I’m now focused on qualifying for Social Security Disability and I knew I had to see it through with him until that’s over.

About a month ago, one of the packets of info I needed to complete for Social Security included a form for him to say that he does prescribe the two medicines I listed, Aricept and Paxil, and that without them I wouldn’t be able to do the work I use to do. Even with them I can’t do the work I use to do but that’s what the question stated. I sent the form with a complete letter explaining why I needed him to sign and enclosing a stamped envelope addressed to SS. About two weeks later Social Security called me because they received my portion of the packet but not his. I called his office and spoke to his nurse who said she didn’t see it so I scanned it and emailed it to her. He seems to be rarely in the office lately between flying places, building his new huge building next door and teaching at Tulane Medical Center so it was a few days before she got back to me. She said he refused to sign the form and he hadn’t reviewed the MRI’s for difference yet so I’d need to come in. After the last visit I decided that after we went on the road for a year I’d see him again and then transfer to a better doctor but I had to go see him this time to get the form signed.

The rest of this is going to be very long (it is already, sorry) because I want to share all the details of the visit yesterday. I need to go into the house and put a second coat of wax on the stained concrete flooring and while I’m feeling okay and rested I need to do that. I will post this and pick up as soon as I finish the floors.

Be back in a bit! Rosalyn

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11.04.17 STILAD about a daughter of a woman with Early Onset Alzheimer’s

Sunday, November 5, 2017 – Please pray for the families of those who died or are wounded in the church shooting in Texas at the First Baptist Church in Sutherland Springs. We’re Southern Baptists like they are so it kind of hits home. Maybe church members who can legally carry a weapon need to bring their weapon with them to church. It breaks my heart that while these people were Worshiping our Lord they were gunned down. I pray that they all were Christians and are now with their Lord and Savior. I don’t find that I am finding the right words to say what I want here so let’s go on to the blog post below.Saturday, November 4, 2017 – When reading through this blog post today and watching the two videos, I felt the same strong need to share it with others as I did when this was originally published in 2015. This young woman’s mom was diagnosed at age 50 with Early Onset Alzheimer’s. Ashley, the daughter was only 17. Her faith in God is in itself an inspiration. Listening to her tell how God used this disease to speak to her and grow her faith and her character. What I think I like the most is how she plays with her mom and makes her laugh. She says in the second video that they developed a special fun way of communicating with each other. I hope that those who love me and are in my life will watch both videos. The first is 7 minutes and the second is over 30 minutes but includes the first video in it. Chip knows how I love to be silly and this made me think of how I’d love my friends and family to be with me. Mama became like a little child and I’d call her pretty girl. She’d just smile and smile when I called her that. Don’t stay away from visiting me because you think I won’t remember. For the few moments that someone is visiting a dementia patient their well being is improved significantly. When I become like a child please still be my friend and come play with me.

This is the original blog post from February 2015:

always show kindnessI posted a blog last Friday so I hadn’t planned to post one today. HOWEVER, I saw an amazing video that needs to be shared now, not later. Actually two videos by the same person. I posted this all on Wednesday on my personal blog because I felt it important enough to share with the many people who follow that blog. Here it is below:

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I know this is not my Alzheimer’s blog but this is so important to me that I wanted to share it on both blogs. Alzheimer’s or any form of dementia, is H.O.R.R.I.B.L.E but rarely do you hear anyone express the realities of it. When I watched this video just now it resonated such truth to me that I just had to share.

After I watched this, I wanted to know how her mom is doing now. I haven’t found much but did come across the most amazing video of this young woman giving a speech at Biola University. In it she describes the spiritual journey she’s gone through discovering God’s character and developing a relationship with Him. This combined with her talking about her mom’s condition is beyond inspiring. She is a very young caregiver that all caregivers can relate to and others of us can learn from. The first video is part of the second one so you can speed through that if you want to but most of the second video is new stuff.

With what I’ve experienced over the last few years with my brain, it’s become important to me for people to understand brain deterioration, whatever the cause. Feel free to share today’s blog with those you love.

I just had a friend write me about a situation she finds herself in with her mom who is showing signs of dementia. While I don’t know answers to everything I will always be glad to share things we did or tried with mama that were successful (or not successful so you don’t do that!) in a similar or same situation. Please don’t ever hesitate to reach out to someone else for help or comfort while dealing with this despicable disease.

1958090_770136129721286_2157984721598649208_nYa’ll come back now, ya’ hear!

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Please come back next time when I’ll share some topics about end of life matters. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

ephesians 5 2

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11.14.17 Some Things I Learned About Dementia – Losing a Loved One to Dementia

I skipped several blog posts that were originally posted on Some Things I Learned About Dementia. I’m finding this hard to do so I’m choosing the ones I believe are most important to share. Feel free to go to our Dementia blog to read more at: https://rosalynsalzheimersblog.wordpress.com/

Our interim pastor’s wife, Janice Adams, shared this on her facebook page back in 2015. I knew it was something I wanted to share with those who follow this blog. I hope, as always, that it is helpful to someone living with someone who has dementia. Here it is!

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Whether you are the one diagnosed, the family of the diagnosed, or the caretaker of the diagnosed – this post is for those of us who have suffered or do suffer from Alzheimer’s or Dementia. My intent from this is to bring comfort and a fresh perspective to anyone in those three painful categories.

For those of you who don’t know, I spent the past two years working in the Special Care Unit of an assisted living facility.

This unit had my heart from day one. I felt a deep sense of compassion for all of the people who lived with dementia, & became excited to help their days be worth living.

There were so many aspects of this job that were challenging. It was a challenge to calm down an angry resident throwing punches. It was a challenge to guide back home the resident who came the hall completely naked, covered in poop head to toe, and unaware. It was a challenge to redirect the anxious, hysterical resident whose convinced that her husband (who passed away long ago) is cheating on her in this moment. Or the resident who truly believes that she is the president of the United States, so you must do everything she says. It was a challenge to get my residents in the shower, or to even use the toilet most of the time.

All of these things & so much more were daily challenges I faced as a caregiver. However, if you know me, you know that I love a challenge. Not only, most importantly, was I able help the resident, but I also felt accomplished for handling those stressful moments well.

But the longer I was there, the less I considered these things challenges. I got to know each resident as a person. I know them from the depths of their life story to the smallness of how they take their coffee. I began to see these people not only as individuals, but as friends. And as I did, the only challenge I began to face each day was the fact that these people that I love so deeply are living with such a terrible disease.

It wasn’t fair that these people suffered in this way. Not only did they suffer, but their families suffered greatly. And then I realized that I was suffering for them as well. My heart broke because of this horrible disease. I remember driving home from work one day and being so angry. I thought to myself, “is a person really still human – are they really still themselves – once their mind has left them”?

This question ate at me that night and broke my heart.

But then God allowed me to see things from a new perspective. I came into work the next day and saw a very angry Ellie (not real name for privacy reasons). Ellie was probably the worst case of dementia I have ever seen. Her mind was totally gone. Most days she was far from the ability of holding a conversation. I walked into my unit this specific day to find her yelling and cussing and threatening – her normal self. But on this specificity day, I went up to her with my arms open wide and a huge smile on my face. I squeezed her tightly and said, “Ellie, I just love you so much”. All at once, she was at peace. No more yelling, cussing, or threatening. For just a split second she had no anger and no pain. With the biggest, two-toothed smile, and joy in every inch of her being, she loudly declared, “oh I love you too”!

It was in that moment that I realized this truth: No matter how gone a persons mind may become, they are still so very human – they are still very themselves. Ellie was deep down in there somewhere – it just took some effort to find her.

I’ve taken care of many residents into their last days. And I can tell you that not a single resident, as gone as their minds became, EVER lost the ability to give and receive love. And this, I believe, is what makes a person themselves – it is what makes a person human.

All at once I saw that what makes a human being human is the heart with which one can give and receive love.. There was an intimacy there that went far beyond words or acts” –Henri Nouwen

I will not reduce the utter sadness of this disease. It is a horrific thing for any person to have to go through. But I tell you that on a daily basis these people in my unit laughed, enjoyed each other, smiled, lived, and loved.

My encouragement to those who have a loved one suffering from dementia, is that as you feel like you are slowly loosing your mother or father, please know that no matter how progressed their dementia becomes, you will always have access to their heart.

At the end of the day, God is good. We HAVE to hold onto this truth. It will sustain us! Romans 8:28 says that God works all things together for the good of those who love him! I promise that somehow – someway, even this, God will use for good.

And most importantly, let us not forget that in the grand scheme of things, our lives here on earth are so short. I praise God for the promise of a better life after this one – with no more sickness and no more tears. I praise Him that He will redeem us for everything we suffered from in this life, beyond what we can imagine!

God is good! I pray you are able to rest in this truth today.

10.18.17 Some Things I Learned About Dementia reposted from December 2014 with updated information

October 18, 2017 – When I first learned about Christine Bryden I wrote the blog post below. In the video below she’s talking about nursing/ memory care and what someone with dementia needs vs. what they sometime receive.  Personally, like Christine, I want to have a say in where I may live at the end of my life.  Roy and I have talked and I’ve chosen two nursing homes (one in Hammond and one in Amite) that we want to check out.  My desire is to take care of as much as I can now when I am in a good place before I can’t do it any longer.

Christine Bryden: I have Mid-stage Dementia. Here’s What I truly Need.

t081026-Through-W3648The video below is exceptional. I can share what we experienced caring for my mom, but Christine Bryden has this disease and is doing everyone a service by sharing what she’s learned and experienced.

Christine Bryden was diagnosed with dementia at the age of 46. At the time, she was a single mother with 3 girls, as well as a senior executive to the Australian Prime Minister. Six years into her dementia, see her talk about what it feels like and what you can do to help.

She is amazing at how well she’d done in writing books, giving lectures like the video.  Reports say that after 20 years of having dementia that she is still alive.  That is such an inspiration to me.

She, so very well, explains what Alzheimer’s patients truly need. The video is almost 30 minutes long but I encourage everyone to watch it. Caregivers, family members and friends can learn so much from this. Her advice is exceptional, especially since she’s actually living the life of Dementia.

I have not read her book Dancing with Dementia so I can’t recommend it. However, if you want to check it out, here’s a link to where you can purchase it from Amazon for $18.32 at:

Click on the photo below to watch the video.

christine bryden

I first saw this on Alzheimer’s and Dementia Weekly, a great resource. I will share some of their articles here but they have so much more than I can pass along so I encourage you to check it out! You can subscribe to receive weekly emails loaded with information. Their website is:

http://www.alzheimersweekly.com/

indexAn informational document called “The 10 Rights of People with Dementia” seems to go well with the video above.

 The 10 points of the global dementia charter are: 1. I should have access to a doctor to check if I have dementia.

2. I should have access to information about dementia so I know how it will affect me.

3. I should be helped to live independently for as long as I can.

4. I should have a say in the care and support that I am given.

5. I should have access to high-quality care that’s right for me.

6. I should be treated as an individual, with those looking after me knowing about my life.

7. I should be respected for who I am.

8. I should have access to medicine and treatment that helps me.

9. My end of life wishes should be discussed with me while I can still make decisions.

10. I want my family and friends to have fond memories of me.

index Romans 8:37-39: “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

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Until next time, my friends:BE LOVING

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