“ I wanted to reach out to let you know I received my care package yesterday. THANK YOU! Within a few minutes of just glancing through it yesterday I have seen a lot that grabbed me. I am now sitting here reading the packet. I have it ready to carry every where I go.” - Mickey “I received my package yesterday. What a sweet surprise! I needed a mile on my face. trying to stay strong but sometimes I just break down. What a horrible disease this is. I’m afraid we have a tough road ahead of us. My honey is only 61 years old. No one deserves this!!” -Janice “I just got done reading all the information in your care package, next I will pass this along to my mom and my sister! This is great information and is extremely helpful. I’m eagerly starting the book today too! You both are doing such a wonderful job in spreading awareness and I too plan to do the same in the future. I believe my dad is in the late stage, coincidentally his name is Louie (thankfully spelled different than “screwy Lewy”). My mom had a stroke 3 years ago yet she loves to read so having this in writing is going to help her understand. I’m sure your dad was an amazing dad, it shows in all the work you are doing to help others manage this horrible disease! THANK YOU!” - Lisa “Our package arrived today. Thank you so much. It’s such a wonderful thing you are doing. I truly appreciate all of the information. Hopefully my daughters will find it helpful too. We’re all still trying adjust to this new life we have and it’s hard on all of us but arming ourselves with as knowledge as we can will help.” - Carolyn “I received you box of resources. It’s tremendous what you have done and all that you have put together. This book, is the same one that I had been eyeing. I’m thrilled to have it. I’m flying to see my parents tomorrow and taking these items with e to share. Thank you!!” - Candy “Just got my package. It is a lovely presentation. I am grateful to you. I was just planning on printing out the GEMS chart and to m delight you have included it in your folder. I am excited to share this information with my HomeHelpers. Again, thank you.” - Bo “Good Morning! Thank you again for your care package! I finally sat down and got through some and not only is it valuable information but it helped us, my sisters and I, not feel so alone. Thank you for everything!” - Amy “I just received the care package. I cannot thank you enough! I cried just browsing through the contents, it means so much that you and your family care enough to create all of this to help others. Thank you ever so much. What a wonderful thing you are doing!” - Beth

CAre Package Impact

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Medications

DRUGS.COM: Search for drugs alphabetically or by category, check interactions, and identify pills. 

Up to 50% of LBD patients cannot tolerate certain medications and may have a paradoxical reaction to them.  A paradoxical reaction constitutes an outcome that is opposite from the outcome that would be expected from the drugs known actions.  There are several categories of medicines that should be avoided or closely monitored while taking them.  Some of the reactions to these meds can be irreversible.  Please consult your loved ones doctor with any questions or concerns before giving over the counter medicines and with any unusual behaviors seen on any of the following medicines:

Antipsychotics

  • Thioridazine (Mellaril, Melleril)
  • Haloperidol (Haldol Haloperidol LA, Haldol Decanoate, Peridol)
  • Chlorpromazine (Thorazine, Largactil)
  • Perphenazine (Trilafon, Etrafon, Triavil, Triptafen)
  • Quetiapine (Seroquel)
  • Olanzapine (Zyprexa)

Often these antipsychotic medicines will make the dementia behaviors and aggression worse.  With our dad, he would become very aggressive when he was given Haldol and Seroquel, which were given to “calm” him down.  His delusions and hallucinations were heightened when he was on ANY antipsychotic.

Rivastigmine (Exelon)

Acetylcholinesterase Inhibitors like rivastigmine (Excelon) and donepezil (Aricept) are often the first medications that are prescribed for LBD and other dementias to help confusion, hallucinations and cognition. The acetylcholinesterase inhibitors are actually thought to work better for LBD patients than Alzheimer’s and other dementia’s early in the disease. In early LBD, the neurons are still alive and kicking, but are having trouble communicating with one another (this is how rivastigmine works - it slows the breakdown of the neurotransmitter acetylcholine in the brain, so there’s more available for communication between neurons). In our case, where LBD was a late diagnosis, the rivastigmine did not work to improve symptoms and seemed to make our dad more lethargic and with increased hallucinations.

https://www.lbda.org/we-content/uploads/2020/08/medications_for_behavioral_changes_in_lbd.pdf

Anticholinergic Drugs

Diphenhydramine (Benadryl, Tylenol PM, Advil PM) needs to be strictly avoided, as they can make the symptoms of LBD worse and increase confusion and progress the dementia.

Anesthesia

Patients who have dementia with Lewy bodies and undergo surgery may develop aggravated postoperative cognitive dysfunction or postoperative delirium.  Many patients with dementia with lewy body respond poorly to surgery and anesthesia, and their conditions may worsen if they have other medical complications along with dementia.

Anti-Anxiety Drugs

Benzodiazepines, including lorazepam/Ativan, diazepam/Valium and alprazolam/Xanax are sometimes prescribed for anxiety and agitation, but they may cause sedation, confusion, unsteady gain or paradoxical agitation in people with LBD. Low and cautious dosages, and as-needed use (instead of scheduled use) are advised. Please show this to your doctor as many do not know. www.Lbda.org

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