Actual Home Progress/Assessment – Patient name changed …



Actual Home Progress/Assessment – Patient name changed to JohnCognitive Issues: Changes from last visit Cognitive fluctuations since May have increased. John does have some days he describes as “fuzzier” than others in the morning. Late afternoon and evenings continuine to be the most challenging. Recently, we have seen several days this has been reversed and he has been more aware and alert in the late afternoon and evenings. He states he is fatigued by trying to think. There appear to be an increase in staring spells as well. These have been nearly absent for approximately 15 months until they reappeared 4 weeks ago. John and I noticed an appreciable lag from the moment he appears to hear something to the moment his brain processes it (3 sec).John has started losing his ability to focus and maintain thoughts mid-sentence. This has happened during a conversation, a request, a thought, a reminded a question, etc. The ability to complete verbal communication is completely wiped away at times. He will stop mid-sentence and say he has no idea of what we were talking about or what he wanted to say. I give him time to regroup, in almost all cases he is unable to retrieve the thought or topic and discontinues the attempt in a short period of time. John’s language processing, (i.e. word finding, word choice, sentence structure) continue to be a challenge. This is the most noticeable particularly in the late afternoon and evenings. Word choice will fall into 1 of 3 categories. 1) Words that rhyme with the previous word(s).2) Words that are not appropriate to the dialogue such as curse words or inappropriate body parts.3) Words that are nonsensical or the first consonant is out of place making it appear nonsensical. *John is at times aware of word substitution, and not aware other times.He occasionally becomes “stuck” or “frozen” on simple task execution. John will ask me what to do next, such as bedtime routine (i.e. turn off tv, put c-pap on, turn off lights, what next, what do I wear). At times he tells me he doesn’t know what to do.His cognitive decline has resulted in John voluntarily giving up his keys and any further driving privileges as of August 2nd, 2018. He did not want to put me through having to ask for the keys. Problem solving, focus, and concentration are a significant challenge for John. He does not like choice and will freeze up when faced with multiple options. Planning, organizing, and working memory continues to be the biggest cognitive challenge for John. Focus, thinking and concentrating results in physical exhaustion. Short-term memory issues appear to be increasing. All types of hallucinations (auditory, visual, olfactory, tactile, sensory) are occurring on a daily basis and are still being managed. Recently, the addition of multi-sensory hallucinations have become part of the hallucination grab bag. Most notably, auditory and visual. Real life items are also “morphing”. As an example; Our dog in her bed turned into 5 puppies, then 3 puppies, then 1 puppy and finally back to herself without ever having moved out of the bed.Looping conversations occur frequently. We go with the flow and try to treat each conversation as though it were the first time we were having. John’s safe haven continues to be his office, where he remains when anxieties and cognitive challenges are running high. He is very sensitive that family is not over-exposed to the disease and have to witness his difficulties. Sleep: Changes from last visitAlthough we have established a consistent sleep routine, John is now experiencing nighttime disturbances (dreams, nightmares, confusion, and hallucinations) I believe he is also experiencing some type of paralysis. Though he states he is awake he is unable to or unwilling to move and believes I have made it this way.We are targeting an average 8-10 hours of sleep a night, but recent disturbances have impacted this. Daytime fatigue and tiredness have increased, but John fights taking naps because he worries it will throw off nighttime sleep quality. Movement/Physiological:Changes from last visit: John has complained of weakness in arms, hands, and legs. I am having to tie shoes and help with physical activities more than in the past.He completed the LSVT BIG program as recommended and it has helped with right arm swing and his stride. However, his balance has worsened, body is often stiff, and his lean to the left side is more pronounced. While actively engaged in LSVT BIG, he appears to become more cognitively engaged and responsive. Physically his body appears to respond more readily after a few minutes of exercise. We have noticed this at other times when we are walking.John had two falls and split his forehead open on the shower door since last visit. He continues to bump into things, most predominantly doors and doorways.John’s heart rate has consistently been below 55bmp, it was in the 40’s for 4 days straight.Head, shoulder, arm, and facial jerking movements occur occasionally, but have not increased. Body posture remains an issue, John needs to be reminded has to pull head and shoulders back when sitting or walking. We continue to have PT in home 2x weekly for exercise and are focusing on continuation of what was started in BIG program. We are also walking 1-2 miles, weather permitting. PT suggests rollator walker, gait belt and pad movement alarm. All items are with the idea he should get used to them now before they are needed.When he’s feeling at his best he still tends to rush to accomplish tasks. He pushes himself and these are the times when the bumps, trips, stumbles increase. I keep a close eye on him during these episodes. Tremors are still present at times. They mostly occur in his right hand and arm, but he feels them in the right side of his face/jaw. Several bouts of whole head tremor, neck, right arm/hand. Other Issues of Interest/Concerns/Questions:Discuss efficacy of Exelon patch for cognitive issues, changes to meds or additional meds to help with cognition.Discuss low heart rate (Bradycardia) and effect on his overall health. Discuss adding Provigil/Nuvigil for daytime tiredness/fatigueDiscuss recent LBD research and drug pipelineA postscript from my source about creating the documentMy wife and I both keep running notes on our iPhones of symptoms and behaviors that vary from the previous doctor visit. My wife will log the note immediately when things occur so not to miss any information we deem important to share with Neurologist. A week before my visit she will pull her notes, I will share my notes with her, and she will draft the first version of the progress report and send to me for review, edit, and approval.. System seems to work good and our Neurologist says approach is best in class and helps tremendously with visits. ................
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