04.26.15 Some Things I Learned About Dementia – Sleep Apnea Testing

Welcome to Sleep Apnea testing 101! If you’ve never had a sleep apnea test, here’s the skinny on it!

I had my five year sleep apnea re-testing Friday night and have written about it below the information from the hospital that follows.  If you’ve never had a sleep apnea test (or sleep study) I hope to take some of the mystery out of it for you.  Here’s how important it is.  I didn’t take action when my husband told me, at least a year before I had my first sleep apnea test, that I was periodically not breathing (for up to 45 seconds) throughout the night.  Because of my putting off getting tested, and also my not regularly using my CPAP once I got the machine, I had multiple TIAs during the nights causing several lesions in my brain where information can’t pass through now.  When oxygen is not getting to your brain while you sleep, multiple problems can happen WHICH COULD BE AVOIDED.

SleepApnea_chart

Avazak.ir-Line28The following is information from our local hospital’s Sleep Disorders Center telling you some about what they do.

North Oaks Sleep Disorders Center provides clinical services and treatments for patients who may show symptoms of a sleep disorder.  The Center’s sleep evaluations are designed to:

  • Diagnose sleep disorders
  • Assess and discuss treatment options for sleep disorders.

Each one of our four soundproof, hotel-style bedrooms has an adjustable, queen-sized bed, recliner and a private, full bathroom. Your bedroom is furnished with a ceiling fan, night lights, a thermostat for you to control room air temperature and a television with a DVD/VCR player.

What Is A Sleep Study?

You may need a sleep study, or polysomnogram, which measures your bodily functions during sleep, to determine if you have a sleep disorder.

What is a Sleep Disorder?

If problems sleeping regularly interfere with your daily life, you may have a sleep disorder. Most common sleep disorders can be treated if correctly diagnosed. The most common signs of a sleep disorders include:

  • daytime sleepiness
  • trouble falling asleep
  • heavy snoring
  • uneven breathing
  • morning headaches
  • night time chest pains
  • heavy use of sleeping pills
  • waking up a lot during the night.

Avazak.ir-Line28SLEEP APNEAIf your spouse is telling you that you snore loudly or you stop breathing throughout the night or you are really tired during the day you may have sleep apnea. If you are noticing these things with your loved one, get them to their doctor to have a sleep study done ASAP.  I’m no specialist but I personally have had sleep apnea for a while. I’ve learned enough to know how important it is that you get tested as soon as possible.

This past Friday evening I arrived at the sleep lab around 8 pm with my pillow and sleeping gown.  The staff member who buzzed me in was the same person who did my original sleep study five years ago.  His name is Nick.  He showed me the room I’d be sleeping in.  Here’s pictures of it.

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20150424_203008There are four separate sleeping rooms there, all sound proof and comfortable. There are cameras on the wall monitoring everything. Nick asked me to fill out some papers – a Sleep Questionnaire. I changed into my gown and followed Nick to sensorsanother smaller room where wires galore were all laid out.

Here he put patches connected to wires all over my face, scalp, neck and legs.  There is also a little wire with a monitor up my nose (like they use when they give you oxygen in the hospital).  HOWEVER, it did not feel like all that was on me.  I didn’t feel anything in my scalp, legs, face or nose and it didn’t stop me from sleeping.  I almost included an actual picture of me all picked up like the dummy on the left but it may have gotten burned into your brain and I’d rather you not live forever thinking I ever looked like that!

I went back to the bedroom and crawled into bed.  From his monitoring room, Nick spoke to me through a speaker on the wall of the bedroom.  He calibrated the sensors by having me look up and down, look sideways, blink my eyes, move my feet a certain way, make a snoring sound and some other things.  Then he told me good night and that was that.

I won’t give details of my specific nights experiences because everyone’s is different.  Generally, once you’ve slept enough time for them to see and hear what they need to (about half the night) they wake you up and if the first part of the night indicates you need a CPAP they will put one on you to wear the rest of the night.  After all those hours of the sleep study they’ve gathered a lot of information.  They wake you up, you get unplugged, dressed in your regular clothes and home you go.

You want to make this as normal experience as possible, so bring with you whatever you have with you when you go to sleep normally.  I always wear ear plugs, so I brought them.  I always read for a while before going to sleep so I brought my Kindle.  I drink water during the night so I brought my cup and they gave me water. Having my own pillow helped me feel like I was at home.  Whatever you need, bring it.  They do not care, so bring it.

About a week from now my primary care physician will get the sleep center’s report.  My CPAP will be recalibrated with the amount of air they determine I now need.  Right now I’m at a 7.  Can’t wait to see what my new number is!

I hope I’ve gotten across the message that this is serious.  It’s not just loud snoring, it can be causing a serious medical condition.  DO IT!  I know I showed this graphic above but it’s so important I’m showing it again.

SleepApnea_chartIf you have any questions that I can answer from my experience, let me know!

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04.24.15 Some Things I Learned About Dementia – Dr. Aubert and getting medical records from Dr. Shamsnia original – reblogged on 11.29.17

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 this before leaving town.  The10801589_855311604510077_5207705261697921312_n previous neuropsych test results showed specific areas of deficits.  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 long series of paper tests designed to show strengths and weaknesses.  It was very interesting the last time I did it and I am happy to say they were able to schedule the next one for next Wednesday, April 29th!!!

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.

Because I want to help people through sharing my journey, I will be sharing more details of my reports both from 2011 and the new ones from 2015.

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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 pulling up my big girl panties 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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04.10.15 My little brain! original – reblogged 11.28.17

537410_424890400919640_291293599_nHi 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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04.08.15 PART TWO – A day at the doctor’s office original – rebloged 11.17

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 sleeping 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!

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04.08.15 A day at the doctor’s office – yes ALL day original – rebloged 11.17

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 and our soon to be grandsons Braxton and Bentley. It’s the twins 2nd birthday and it’s my sister’s year older birthday – she’s that old!!

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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