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Joined: 5/20/2014
Posts: 4408
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This was the discussion with neuro psychologist this afternoon! Also referring me to neurological opthamologist. Has anyone else had to see neuro opthamologist?The bruised hip bone is seeming the least of problems at this moment. Have a headache and need a nap.
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Joined: 12/4/2011
Posts: 21306
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My PWD has been diagnosed with LBD. I would be glad to share links to sites that have been helpful to me.
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Joined: 5/20/2014
Posts: 4408
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Yes, jfkoc that would be helpful. Thank you.
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Joined: 12/4/2011
Posts: 21306
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sorry for the delay...the best thing I have come upon is the book Dementia with Lewy body and Parkinson's Disease Dementia by J. Eric Aslskog. He is with Mayo. I some time read on LBDA but somehow can't get logged in. LD Daughter has logged on so she may have found out the secret. Right now we are having a devil of a time with meds. The Neuro prescribed benzos to help with some of the non-motor symptoms. The sent him over the edge. Her remedy was to take more. Then it was too mush Sinemet. I ended up having a long chat with our pharmacist who kept rolling her eyes in disbelief. I think the meds are very tricky and personal....requiring trial and error. Today is a lot better. It is good to have him get some relief.
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Joined: 5/20/2014
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Hi Jkoc,
Med's very 'tricky' with LBD. So glad he's feeling better. I don't know if you've seen the below video shorts.
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Joined: 12/4/2011
Posts: 21306
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yes, thanks, and have ordered all of the dvds. currently have a huge problem with the neurologist who despite a re flag on Dick's chart, has prescribed Seroquel and Klonopin for anxiety. One night he was having such a horrible time I surrendered to using .5 Haldol. The Dr's solution was to give more Seroquel. Then she said to lower the frequency of his carbodopa/levodopa CR. Tricky is spot on. We are going to try a bit of Xanax tonight. Glad the cortisone continues to work
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Joined: 5/20/2014
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I keep getting stuck back and forth with this and worry about PCA or CBA (I think that's what it's called). Losing vision means losing independence and perhaps ability to live alone. I have to go to Neuro opthamologist next week. They said plan to be there for 3 or more hours and plan to get some testing ( of what kind I don't know). Nervous about drive to Philadelphia in city and the whole deal. My friend here who helps me has relapsed with alcohol and has depression. Not a good mix! Neighbors, friends, and family having problems problems with Diesel and problems and stress at work, problems on the board this week. I feel stretched out and pulled all over the place. I think I want to sleep all weekend and just watch TV and not talk to anyone. need to decompress. Maybe I could talk to someone who could be supportive of me? Lost and alone!
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Joined: 12/9/2011
Posts: 13687
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Dear llee, I send you a big soft hug and I so wish that there was more I could do for you. You must be exhausted from such a high level of stress and facing all the yet unanswered questions plus all that is happening with others in your life. It is just the worst to feel vulnerable with so many unanswered questions and be so much on overload. Posterior Cortical Atrophy, (PCA), being not easy to diagnose, begins with a course set on elimination of findings as much as identifying findings. This then makes sense to me as to why you are going to be seeing a Neurological Ophthalmologist. It will bring much needed knowledge to the table. It's a wonder your nerves are not vibrating like a tuning fork. You are a very intelligent person and are good at moving forward in reality for a diagnosis so that a care plan approach can finally take place in a meaningful way. That will hold you in good stead while diagnostics are taking place. You may not feel it, but you are awesome in how you are pursuing this. This weekend . . . oh yes; it does sound good to step way from everything and everybody else's problems to treat yourself well and indulge yourself as much as you can. Sleep; perhaps staying in pajamas; not answering the phone; watching a movie or two while you eat whatever you want even if it isn't broccoli! Actually; my kind of day. (Well; if there is chocolate involved!) llee, I may not have dementia myself; but that does not mean that I do not care about you and that I do not feel for you, because I do. Here's hoping for a good weekend for you and what the heck; here come's another one of those big soft hugs, J.
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Joined: 12/4/2011
Posts: 21306
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Wish I did not live 1/2 way across the country. I would be ever so glad to take you...
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Joined: 5/20/2014
Posts: 4408
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Thank you Jo and Jkoc. I did have that what I like to call a Lifetime Originals weekend, in pajama's, naps and of course some chocolate (ice cream)! Thankfully, my friend has stepped in and will be taking me to the appointment in Philadelphia which is a big relief. I was getting anxious worrying about navigating traffic in the big city but now that is one less worry. Whew!
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Joined: 12/9/2011
Posts: 13687
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Chocolate IN ice cream; whimper, whimper . . . give me a call, I have my own spoon! (Grin.) Sounds as though your hip has been on the mend? Hope that is so. I am truly glad in that your friend came through for you in transportation to the Neuro Ophthalmologist. That is happening this week, isn't it? What a good weekend you gave yourself, I wonder why we don't do such things for ourselves more often . . . J.
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Joined: 5/20/2014
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Yes Jo,the appt is this Thursday. Actually, I did not know how to or to take the time in the past to take care of myself like most women doing and doing for others. A good friend taught me about decompressing with the Lifetime Originals and I've been doing it ever since. I'm hooked!
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Joined: 12/9/2011
Posts: 13687
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I will be thinking of you on Thursday and hope that the experience is an easy one and that the three hours pass swiftly. Will you be taking any granola bars with you in case you get hungry? When facing hours of a test with a long drive to and from, I used to stuff a few granola bars in my purse for a "just in case" need. Sometimes they came in real handy. Where I live, it is going to be hotter than the hinges on the gates of purgatory this weekend. I think I will use your good example and just hunker down with the TV and the air conditioner. Best of wishes coming your way for a good experience on Thursday, J.
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Joined: 11/29/2011
Posts: 7027
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Hi Llee I think you said your appointment is in Philly and you are nervous about driving. Your local support system won't work.I don't know how far you are from Philly. Can you call and ask your local Aging Offie if they provide transportation. Yes, transportation is provided for those under 60 with a medical necessity, which you have.
Do call you local Aliz. chapter (1-800-272-390 for #) and also ask about transportation.
I no longer even thinking about doing any where near NYC.
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Joined: 12/4/2011
Posts: 21306
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Are you new to the Lifetime Origionals Club? I have an emeritus membership...lol
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Joined: 5/20/2014
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Mimi, Thanks but I do have a ride now. Center city makes me anxious these day's.
I'm a quick study Jfkoc...and it's nice having the drama contained in that TV screen. Then there is getting a break from thinking about your own problems...
Stay cool Jo!
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Joined: 12/15/2011
Posts: 18704
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How did your appointment go today with the neuro-ophthalmologist, Ilee? I'm glad your friend was able to accompany you.
Iris L.
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Joined: 12/9/2011
Posts: 13687
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Thinking of you, llee and also wondering how it went and how you are. I also hope the long day did not cause your hip to flare up. J.
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Joined: 5/20/2014
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It was somewhat of a fiasco with eye's dial-lated (sic) over and over for various testing. Eye's still tired! 4 hours of test and waiting for results! Neuro Op and intern were very nice. Interested in what is wrong. I felt like a unique specimen! Told me nothing wrong with eye's has to be brain but no details or bad news. He is going to write conclusion and recommendations to neurologist. I guess I will ahve to pick neurologist brain about conclusions on next appt (9/11). Fight for an answer & diagnositc impressions and conclusion. Do I want to know? Honestly, I can't answer that question. Hugs and Love to All...
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Joined: 5/20/2014
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One thing that keeps sticking with me about the Lewy Body possibility that I heard somewhere is that the persons knows that they have dementia. Sort of an acute or hyper-awareness perhaps. All this time and since my 40's I have been very conscientious of the cognitive decline, aware of every missing link. Like I'm aware of every synapse that miss-fires and every wrong turn I make. It's hard to put it to words. It's hard knowing sometimes the things I do make no sense and are not right. Like I know looking in the refrigerator for clothing is not right, not normal and I can feel that when I do it but cannot and do not have control over it. Maybe that is the hard part, the knowing all the time. I wish I could talk to another person with LBD and see if this makes any sense or if I am getting this right.
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Joined: 9/12/2013
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even though my diagnosis is ALZ I never really am sure if it couldn't be fixed some how. From what you know does LBD feel like a possibility more than other causes? I had just turned 40 when I had first onslaught of odd stuff begin. Neurologists would say, "Not married? Children out of the home?" Things were not normal, reality was different. Maybe the beginning of ALZ? I still remember hitting the curb at office parking lot, not judging distance well - which cleared up after 6 months. I got my health back for about 10 years...or learned to live with changes. I was close to a man with Lewy Bodies, part of his Parkinson's that took years to diagnose. He was well aware of things, he would sit hunched over with his face in his hands. He had vertigo as his first sign. He was up late nights. I don't remember anyone ever giving him anything for his anxiety, that shocked me. He was 75. His "dementia" from what I heard was mostly thinking he was at a lake house where he used to fish a lot, or distress because he wanted to go back there. My visual problems are also in my brain not my eyes. Since most people can not report visual problems (I could only report double vision, fuzzed over) lots of falling could be from visual changes, not just balance problems. I did not know I had lost peripheral vision until I was tested and told. Nothing is straight forward. Lots of people concerned about you and grateful for you sharing your experience. You matter to so many people (and your dog) - want you to have all the best help there is possible.
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Joined: 12/9/2011
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For those who have not seen it, this is the link to the Lewy Bodies Association and information: http://www.lbda.org/ J.
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Joined: 12/9/2011
Posts: 13687
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No wonder your eyes are tired! Mine go bonkers for hours after just one dilation with an eye exam. Four hours was an awfully long time to be put through all the exam wringers. Did they give you any breaks? They should have served wine and hors douvres in such a situation! I hope your hip did not start to complain about having to sit there for four hours and then a long drive both ways, that would be insult added to injury. Two weeks for results, I'm sorry you have to wait, but I understand what you are saying about maybe not even wanting to hear . . . . How is doggie doing by the way? Such a good boy. National Dog Week is September 19th thru September 25th. I think special treats are in order! I've always said it; dogs are SUCH good people! J.
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Joined: 9/12/2013
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L lee checking in. HUGS and thank you for all your support through my tough times, here and in private. hope we all can be of help to you too. getting diagnosed is nailing jello to a wall. Sometimes feels like a waste of good jello.
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Joined: 5/20/2014
Posts: 4408
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So here's how Friday went. Vet appt at 1 pm. They called to reschedule to 7 pm. I said that is too late for me that I took off from work for the 1 pm. Caller say's okay is 5:40 better. Yes 5:40 it is then. I get there they tell me my appt is at 7 pm. There no recorder of my earlier conversation! I requested to be seen in the order that I arrived. No confirmation of dx for Diesel! To test for Myasthenia gravis bllodwork has to go to CA and test costs over $500. May be Addison's another expensive test and you have done so many test already we hate to see you spend so much on all these tests. It also could be brain tumor. Here's the kicker...we think the best way and most bang for your buck is to take Diesel to a neurologist! There are vets who specialize in neurology! Thus they are referring Diesel to University of Penn vet! I have to marinate with this information for a little while!
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Joined: 11/29/2011
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Hi Llee I have Myasthenia Gravis and i did not go through any such process. It did take awhile for me to figure out that changes of glasses were not working.
I then went to an MD eye doctor. I had to get past his nurse asking something about a red line. And my responding there are two line lines. And she reaffirming that there was one red line. And my saying I am seeing two red lines. Fin ally she left to get the doctor. he validated that I was indeed seeing two lines. Then sat next to me and said Im almost 100% sure that you have Myasthenia Gravis. Can you go to the hospital for blood tests and brain scans. Went across the street for that. Oh yes, all blood tests came back normal, except one that had to be sent away. Maybe that's the one you are mentioning. Medicare and my insurance paid for it. It finally came back, positive. However, I still needed one more test to confirm. It was something called Tensilon (?). That was done at the doctor's main office since it is a medical procedure. After prep and a very mild anesteshia, drops are put in one eye. Then the doctor tries to pull open the lid. Same thing other eye. Takes a few seconds each eye bngo, yes you have MG. Next ocular (just the eyes) or ge? I had general.
Home get out the medical dictionary. Read. patient usually dies because can't breathe. OMG!! The thought comes. And here i worried for so long about getting Alzheimer's. Oh well, suffer, maybe five minutes, an it's over.
just about the time the MG was finally getting stabilized, I was diagnosed with AD.
It is extremely rare to have both.
And yet here on the Boards you, being tested, Sun-Also, I think confirmed and myself. What are the chances?
Wait, this is your dog? That's why the cost! And the treatment you received by that office was not ethical. There may have been an emergency which caused the change. Did you get that explanation? So sorry.
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Joined: 12/15/2011
Posts: 18704
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I had two cats years ago with what was called feline AIDS. They seemed fine and happy. When they began bleeding from their mouths and couldn't eat, I treated them humanely. I was not going to spend a lot of money needlessly.
A friend of mine spent $1,200 on her guinea pig. They live for only so long, anyway.
Other people do not see any problem in adding to our stress. Sometimes, we just have to put our foot down mentally, and say, "No more!"
Iris L.
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Joined: 5/20/2014
Posts: 4408
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Iris,
Thanks for being the voice of reason. I have to make a decision and plan for euthinization!. He fell down the steps last night from top-bottom! He got up right away but it had to hurt! I can't go on like this any longer and I cannot afford a vet & more tests from University of Penn (they are very costly). So sad right now!
Thank you all.
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Joined: 12/9/2011
Posts: 13687
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Oh llee, I am so heartfelt sorry to hear about your sweet Diesel; it is beyond difficult to have to come to that merciful decision. There are not words that can suffice to send that will make this any easier, but my thoughts are with you along with a warm hug coming your way. J.
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Joined: 3/7/2012
Posts: 1747
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Ilee... I am sorry about Diesel.
As Iris' said sometimes we have to say, "No more." I had to say those exact words to the Emergency Team when my beloved husband had his very sudden massive heart attack at home. The Emergency Responders had tried 4 to 5 times to bring him back to me.
"No more" are very difficult words. But it is the humane thing to say and to do. My immortal beloved looked at me and he smiled at me in love and gratitude the second before he died. There was a twinkle in his eyes.
Courage. Courage.
We never forget those we love. They remain immortal in the heart.
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Joined: 12/15/2011
Posts: 18704
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My aged male cat began to fall over and I knew it was time. I carried him out to the balcony so he could feel the sun on his body. I petted him and kissed him and softly sang lullabys. I then took him in a basket to the vet. He was barely breathing. I was sad, but I knew it was his time.
Animals in the home live longer than they would live in the wild or in the street. They have had good lives with us. We can honor them by not letting them suffer.
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Joined: 5/20/2014
Posts: 4408
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My neurology appt day is here. So many questions about the neuro opthalmology tests and neuro psych scores I can't even begin to get them on paper or conceptualize what I want to ask. I just want to know why my brain is not seeing and in what ways my brain is not seeing? What I need to be aware of and know about this? How do I need to be careful? Well I guess this is as good a start as any with questions. Wish me luck and courage!
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Joined: 12/15/2011
Posts: 18704
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May you get your questions answered, Ilee. I keep a journal specifically for doctors' appointments and test results, with questions and answers given.
I also balance any answer given with input from the members here. Sometimes, the advice given by a doctor may be speculation, and not pertain to our own case.
Give yourself a reward after your visit. I always do.
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Joined: 12/9/2011
Posts: 13687
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llee, I will be on pins and needles until we hear from you about your appointment. Hopefully this will be a good appointment in which a physician actually gives you all the information without having to have it pried out of him. I so wish you well and you deserve answers. We will be waiting to hear and truly care, J.
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Joined: 7/24/2015
Posts: 3020
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Best of luck Llee08032, hope your appointment goes well today and you get more insight into what is going on.
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