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whaat73

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About whaat73

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  1. Forum question not posting

    Hello, I just wanted to double check on my posting as well. I didn't know we could check "follow this topic" and will do so in the future. Could you please tell me if my posting is still being reviewed by the moderator? Thank you in advance.
  2. Hello Dr. Okun, I am my 69 year old mother's caregiver. In September of 2013 she was diagnosed with PD. At that time she was only exhibiting a slight resting tremor in her right hand, micrographia, and deficit in sense of smell. She wasn't experiencing anything that was trouble her or I. The PD diagnosis came as a surprise. She was placed on Azilect and Amantadine and we were sent home with a pamphlet and told to join a support group. That was the extent of the "education" we received from her neurologist at that time. I decided to seek all of the information I could about my mother's health care/diagnosis etc. Once I started reading about PD I realized how complicated and unpredictable this disease can be. For about a month and a half after her diagnosis she became nearly catatonic and she started having hallucinations. Her family doctor weened her off of both the Azilect and Amantadine and she became herself again. The day before Thanksgiving in November 2013 I was standing in my mother's living room and she had a stroke. Thankfully my husband is a first responder and we got her to the ER right away. They couldn't find evidence of a stroke on CT Scan but I made an appointment with a new neurologist and it was at that appointment that they found evidence of a small stroke on MRI. The majority of damage that was done from the stroke was the aphasia she was experiencing. It wasn't horrible but she wasn't having any trouble with speech prior to her stroke. Long story short I would say she gained back about 90% of speech. Fast forward to 2014-2015. Finding the new MDS was a life saver. She was President of the Iowa Parkinson's Foundation, involved in research, and she spoke to my mother and involved her in her own care, rather than deferring to me. I liked her immediately. The MDS placed her on L-Cardopa 25/100 4 x a day. However, over the next year my mother would start having itermittent problems with her speech.....mainly trying to get the right words out. From what I had read, she was exhibiting the all to common symptoms of cognitive impairment in PD. Her daily life, however, was not disrupted. She was still meticulous about balancing her checkbook, keeping her home tidy etc. But there were still troublesome things that occurred. My mother internalizes everything. She is extremely anxious and prone to depression. However, she never voices this. It manifests itself in other ways. She has feared dementia her entire life. And she began obsessing over her PD diagnosis and worrying that she would end up in a wheelchair. She would have episodes of worsening speech, slowed thinking, and questionable judgement. As her appointment with her MDS got closer this past January she progressively got worse. I wrote to the MDS and she agreed to move up her appointment date. My mother was like a small child at that appointment. At that point I was devastated and certain that she was going to be diagnosed with DLB. This was not my mother sitting before me. To my surprise her MDS was somewhat dismissive of her cognitive issues. Yes, she administered a MMSE. Mom scored just above MCI. Her neurologist was clearly not comfortable discussing the problems with cognition. I have read about the fact that there are some neurologists who are not comfortable speaking about cognitive issues and/or they just don't address them for whatever reason. I explained to her that my mom is horribly depressed and basically just sitting around waiting to die because she feels there's nothing to look forward to. The MDS told me she doesn't treat depression and I would need to speak to mom's family physician. So she agreed to take ween her off of Primidone and push her back to 3 L-Cardopas a day. She told us to come back in 6 months. As I type this I'm still shocked at how she handled this. Not to mention telling us to come back in 6 months? Literally the day after her doctor appointment with the MDS my mother started to return back to her normal self. (Normal being still with cognitive issues but nothing severe enough to impact daily life) She later told me she thought she was going to be told she had dementia at that appointment and she was extremely upset and anxious about it. Anyway.....I'll wrap this up. My mom's condition continued to stay level until about 5 days ago. I noticed she was having more difficulty with her speech....ie recalling words, getting out the right words, and she was confused at times over things that are not normally confusing to her. Yesterday I took her to Walmart to grocery shop. She did ok. When we got home I went upstairs to her house and we had a Subway sandwich together. While having a conversation with me I noticed she began to stare blankely. She'd start a sentence and trail off and laugh saying she forgot what she was saying. We would be talking about a particular topic and she would start rambling about something completely random that made no sense. For example, we were talking about going to the Garth Brooks concert this coming weekend. In the middle of this she said "You know, its like when you go into Younkers and there's something you see you want to buy and its $150 but you only have the $50." She then trailed off. I asked her what she was talking about and she looked at me like I was nuts and told me she already explained to me about the $150. I have a monitor in her home that I have on at all times. I watched her all last night and all of today. I contacted her MDS to let her know what was going on. She can't see her until next week on the 4th. Here are my questions along with the medications she's on: Medications: L-Cardopa 25/100 3 x day Propranolol 40 mg 1x day Buproprion 300mg 1x day Folbic 2.5-25-2mg 2x day Amlodipine 2.5mg 1x day Plavix 75mg 1 x day CoQ10 200mg 2x day D3 1000 units 1x day Could the fact that my mom be extremely medication sensitive be causing her to exhibit these issues? Was her extreme behavior last night considered delirium? And if so, isn't that an urgent issue her doctor should be seeing her for? Could her depression be causing these symptoms? What does one do when the MDS doesn't want to address cognitive problems and/or is dismissive of them? Dr. Okun I know I'm reaching here. I know in reality what I'm probably up against and just don't want to face it. My mother is the best woman I know and my heart is in pieces watching this happen to her. I'm lost, confused, devastated, and deeply sad. I want very much for this to be a fix that will bring her back to at least somewhat close to where she was just a few weeks ago. When she was diagnosed in 2013 she was happy, "normal", smiling and had no issues except a slight resting tremor. How does it happen so fast that she is exhibiting this kind of behavior? I know DLB and PDD can cause this. I'm holding fast to the hope that this is not her fate. Thank you for your time. I apologize for the length of this message. Any insight or suggestions are welcome. Dina
  3. Thank you Dr. Okun, The fact that you answer questions for us, and on a holiday, means so much to those of us who are scared and sad for our loved ones suffering. I am truly grateful to you. Thank you again. Dina
  4. Hi Dr. Okun Thank you for your quick reply. My mother is actually 66 and not 86 so I wanted to ask you if that changes your recommendation? Thank you ago for your quick response. Especially on Thanksgiving. I hope you have a wonderful holiday. ???? Sincerely, Dina E.
  5. Good morning, My mother is 66 years old. She was diagnosed last month with PD. She also has Essential Tremor and was diagnosed with that in 2001. As far as the PD diagnosis goes she was referred to a movement disorder neurologist when she presented with a resting tremor in her right hand. So far that has been the most pronounced motor symptom she has. She was placed on Azilect and Amantadine. These medications made her nearly catatonic at times as well as exaserbated PD symptoms she didn't even have, or at least weren't noticeable up to that point. She was weaned off the Azilect over 5 day period and the Amantadine dosage was cut in half. She continued to have terrible side effects and her hands, legs and feet began swelling. The doctor had her sto the Amantadine a week ago yesterday (Wed). Her symptoms have improved and she was back to her old self, minus the resting tremor. Last evening I was at her house for about 2 hours. We talked and laughed and the evening was a typical one for her (she lives next door to us). I was about to leave when she asked me if I needed her coat to walk back home. I told her no thank you and she replied with slurred, garbled, inaudible, speech that was somewhat hard to hear. I thought she was playing a joke on me until I saw the horrified, scared look on her face. I walked her to the couch and called my husband who is a first responder. He checked her for signs of a stroke and she didn't have any except the sudden slurred speech and inability to communicate well. We decided to take her to the ER. Long story short, they did a CT scan and it was negative. So they attributed this to the PD and started her on a low dose of Sinemet and sent her home. Her speech has not improved over the past 6 hours. Her other medications are Primidone, Propranolol, and Bupropion. My question is this: Is it common for PD patients who have never had speech problems to suddenly, in mid conversation, have slurred, garbled, inaudible speech? In a matter of a seconds she went from her regular self to a scared, frail person unable to speak. And if this does happen, is this permanent or is there help for it? I'm sorry for going on for so long but I wanted you to have some background knowledge on my mom. Thank you for any help/advice you can offer. Sincerely Dina E.
  6. Good morning, My mother is 66 years old. She was diagnosed last month with PD. She also has Essential Tremor and was diagnosed with that in 2001. As far as the PD diagnosis goes she was referred to a movement disorder neurologist when she presented with a resting tremor in her right hand. So far that has been the most pronounced motor symptom she has. She was placed on Azilect and Amantadine. These medications made her nearly catatonic at times as well as exaserbated PD symptoms she didn't even have, or at least weren't noticeable up to that point. She was weaned off the Azilect over a 5 day period and the Amantadine dosage was cut in half. She continued to have terrible side effects and her hands, legs and feet began swelling. The doctor had her stop the Amantadine a week ago yesterday (Wed). Her symptoms have improved and she was back to her old self, minus the resting tremor. Last evening I was at her house for about 2 hours. We talked and laughed and the evening was a typical one for her (she lives next door to us). I was about to leave when she asked me if I needed her coat to walk back home. I told her no thank you and she replied with slurred, garbled, inaudible, speech that was somewhat hard to hear. I thought she was playing a joke on me until I saw the horrified, scared look on her face. I walked her to the couch and called my husband who is a first responder. He checked her for signs of a stroke and she didn't have any except the sudden slurred speech and inability to communicate well. We decided to take her to the ER. Long story short, they did a CT scan and it was negative. So they attributed this to the PD and started her on a low dose of Sinemet and sent her home. Her speech has not improved over the past 6 hours. My question is this: Is it common for PD patients who have never had speech problems to suddenly, in mid conversation, have slurred, garbled, inaudible speech? In a matter of a seconds she went from her regular self to a scared, frail person unable to speak. And if this does happen, is this permanent or is there help for it? I'm sorry for going on for so long but I wanted you to have some background knowledge about my mom. Thank you for any help/advice you can offer. Dina
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