A live & interactive discussion with Ginger Smith, a 86 year old retired Speech Language Pathologist who spent two years bedridden in a nursing home. Ginger showed a variety of symptoms including (aphasia, hallucinating, Lewy Body Dementia, and more). She was placed on hospice where all of her medications were withdrawn when she slowly started to recover. Ginger is now living independently at home and eager to share her experience with caregiving both as a care partner and person with lived experiences who has survived.
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Chat Transcript
12:06:56 From zahida hasan : hi Ginger, love zahida????
12:08:36 From Adele Logan-Galen : Another great webinar from Positive Aging. Thanks Steve!
12:10:10 From Deb Wilburn : Straight A! Awesome
12:10:49 From mary busse : What a story! Thanks!
12:19:40 From ellen belk : Thanks for sharing so candidly dear GInger and certainly recognizing the care team members who provide care in a non-judgemental way. I too, have had ACTUAL residents with properly diagnosed Dementia who had similar bowel behaviors that you just shared. Bless you for being so Open about your experience
12:20:29 From Meryl Schaffer : The concept of WANTING to improve plays such an important part in the healing process.
12:20:55 From Adele Logan-Galen : Great point Meryl!!
12:21:15 From Meryl Schaffer : Thank you Adele:):):)
12:21:44 From ellen belk : I've had more than a handful of residents on Hospice care - be able to come OFF hospice because their conditions improved so vastly.
12:22:11 From Steve Gurney - ProAging Community : Autophagy allows your body to break down and reuse old cell parts so your cells can operate more efficiently. It’s a natural cleaning out process that begins when your cells are stressed or deprived of nutrients. Researchers are studying autophagy’s role in potentially preventing and fighting disease. https://my.clevelandclinic.org/health/articles/24058-autophagy
12:22:42 From ellen belk : HOSPICE needs to do a better job of explaining their overall role - it's NOT just an end-of-life care.
12:23:12 From ellen belk : 30 meds?? Yikes! That should've been evaluated each time a new med was added. Ugh. Broken System, for sure
12:23:20 From Adele Logan-Galen : I agree. That is one reason why I am becoming a hospice volunteer!
12:23:28 From Joan Rubin-Kritz : was it really dementia or Delirium??? (I missed the very beginning)
12:23:32 From ellen belk : Bravo Adele!
12:24:06 From Meryl Schaffer : My husband is a retired nurse practitioner. He told me that he has seen cases where the removal of all medications, especially when they are not working becomes the key to healing.
12:24:07 From ellen belk : I missed beginning too. But, sounds like she certainly had a mish-mash of medications that could've been certainly giving her adverse reactions
12:24:47 From Margie McWilliams : We need to do a much better job as a society to identify healthcare needs as early as possible and honor our older loved-ones by advocating for healthcare and palliative/hospice reforms.
12:25:34 From Meryl Schaffer : Thank you Margie!
12:26:48 From Meryl Schaffer : It is a miracle!!!
12:27:05 From ellen belk : Actually - that's not quite true about the LBD DX. It can be affirmed after significant assessments and testing under the proper care of expert docs who specialize
12:28:28 From Carolyn Cook to Hosts and panelists : What do you think were the reasons for your recovery from the dementia beyond meds removal?
12:28:59 From zahida hasan : yes, steve
12:28:59 From Chana Hershkop to Hosts and panelists : As a pharmacist with a geriatrics specialty, I'd love to personally speak with Ginger. Deprescribing medications is a big part of what I do.
12:29:11 From ellen belk : YES! Ginger your WILL & strength are certainly the driving factor.... BRAVO!
12:29:50 From Kelly Lambert : I am amazed by the candor, compassion, clarity, humor and realistic recounting of an incredible story. Bravo!
12:29:59 From Joan Rubin-Kritz : Traditional medicine and big pharma keep us sick.... and have taken measures to discredit and eliminate alternative and holistic approaches.
12:30:13 From ellen belk : YES Joan!!!
12:30:23 From Leslie McTyre : yes Joan!!
12:30:32 From Meryl Schaffer : I broke my ankle almost 3 years ago. The hospital pharmacist told the nurses to change the timing of medications I took for the purpose of making the nurses life easier. I had to throw a hissy fit, because my body would not be able to deal with his SUGGESTED schedule change.
12:30:36 From ellen belk : AGREE - Kelly! She's a warrior to be so candid. It's a Blessing others need to hear
12:31:30 From ellen belk : The HUMAN SPIRIT is powerful for sure
12:31:50 From Meryl Schaffer : This is called fighting without fighting.
12:32:32 From Angela Wyckoff : Yes, with the reverse mortgage, you can live there as long as you live there. :)
12:33:29 From ABIOLA BAJERE : What a story! Yes, she's indeed a warrior.
12:33:47 From ellen belk : I LOVE that an 84 years young woman just used the word GHOSTED!!! lol Awesome
12:34:11 From zahida hasan : ????
12:34:20 From Meryl Schaffer : A reverse mortgage can be a very good avenue, depending on the circumstances.
12:34:22 From Deborah Bratcher : This is all SO encouraging to know that even being put on Hospice may NOT be the end.
12:34:39 From ellen belk : She's sassy & clearly updated on the millennial slang! lol I LOVE that! She's amazing
12:34:45 From Alice FISHER to Hosts and panelists : I am seeing a similar situation with a friend. She is now living in a “memory unit”. Her kids lived with her, but were working, one who consistently has two shifts. She was devastated by the death of her husband. Her daughter told me she would re-learn of his death every day, and at night would love home to look for him. I’m guessing in her case it is depression.
12:35:01 From Carolyn Cook to Hosts and panelists : I wonder if a lawyer could help her get out of that mortgage or pay back what she borrowed?
12:35:09 From Alice FISHER to Hosts and panelists : Leave home
12:35:17 From Monique Harkless : Why do you think you were not resistant to going to a nursing home? Do you think your rehab background played a role in your understanding of the nursing home placement during the time in your life. You understood what was necessary at that time so to speak...
12:35:25 From Deborah Bratcher : She IS amazing. I hope we all take to heart how so much of our good health can be dealt with by adopting positive attitudes.
12:35:26 From Angela Wyckoff : ????
12:36:39 From Meryl Schaffer : Encouraging, joyful, happiness all wrapped up in one
12:36:50 From Steve Gurney - ProAging Community : Ginger Smith <gingerspeech@gmail.com>
12:36:58 From Meryl Schaffer : Ginger sounds like Catherine Hepburn.
12:37:03 From ellen belk : She needs a website!
12:38:11 From Leslie McTyre : A call out to people that have friends/family with dementia: have patience, tolerance, forgiveness with them because none of their bad times have ANYTHING TO DO WITH YOU. It is ALL the illness and none of it against you!!
12:38:17 From Chana Hershkop to Hosts and panelists : You got it, Ginger! There are so many non pharmacological methods that can be used instead of medications!
12:38:37 From Meryl Schaffer : We are all against anti-wrong diagnosis'
12:38:57 From Carolyn Cook to Hosts and panelists : Cat Mama’s Rock!
12:39:22 From ellen belk : ❤️ Leslie
12:39:58 From Margie McWilliams : I understand about the need to have the love of a pet in your life. My cats are part of my very soul! Thank you for sharing your story. I work with families going through a lot of stress, trying to find the right solutions for quality of life care, and would like to stay in touch with you and read your memoir. You are a heroine.
12:40:12 From ellen belk : I literally just wrote an article yesterday for a client entitled 'Defining & Describing Reversible Dementia'
12:40:30 From ellen belk : So many people are unaware that Stories Like Gingers are a THING!
12:41:01 From Rita Sherman : Ellen, is that an article I could locate and read?
12:41:54 From ellen belk : Undiagnosed or untreated insomnia, sleep apnea, dehydration, Vit. B1 & B12 deficiencies, severe alcohol issues and more...
12:42:17 From Kathleen Steed to Hosts and panelists : I heard an outstanding presentation by a physician about what can happen with medication. I will send the information to Steve. I attend lots of zoom presentations, and this stood out as among the top ever.
12:42:27 From Carolyn Cook to Hosts and panelists : Do you think being a caregiver contributed to your stress that brought on your mysterious condition? I am also having dementia symptoms and it is quite worrying. Ellen, can you share your article?
12:42:27 From Leslie McTyre : That's the good part of trauma - takes care of the next time because it happens automatically to care for you
12:43:15 From ellen belk : Rita - please visit my website; where I write about Dementia topics. I'll probably post the one on Reversible Dementia next month - after my client has a chance to use it. www.keepinmindinc.com
12:43:29 From Angela Wyckoff : Truly inspiring!!! I cannot believe how much you've recovered.
12:43:51 From Rita Sherman : Thanks Ellen
12:44:05 From sharon egitton to Hosts and panelists : I love that you're writing a memoir! There's so much to be learned from your experience and your outlook on life. Thank you for such a positive affirmation of life! I will be sharing your story :)
12:44:48 From Meryl Schaffer : Ginger's level of intelligence is playing an important role in her current presence.
12:45:34 From ellen belk : Agree Meryl. For sure...
12:45:54 From Meryl Schaffer : YYYEEEAAA!!! Steve for what you are saying!!!
12:46:28 From Meryl Schaffer : Medication is NOT always the answer.
12:46:40 From mary busse : I think I remember that Art Buchwald, the well known columnist, outlived the sis months limit on hospice care, and lived for some time after that.
12:47:43 From Karen Brody to Hosts and panelists : How did she go from one med to thirty.
12:48:32 From Leslie McTyre : Strengthening the will of people should begin to compete with meds in the healing process but we need to row against the drug corporations counter-current
12:48:34 From ellen belk : FYI - to ALL.... I was my Dads advocate, after his dual dx of Lewy Body Dementia & Parkinsons and at one stage was in a rehab setting, after an awful stint in Geri-psych....as Dad got stronger he began refusing his meds. And, the Rehab tried to Evict Him. I had a conference call with their leadership and reminded them of his RESIDENTS RIGHTS - and that it's illegal to kick somoni out due to med refusal. So - To other caregivers...PLEASE know your person has 'rights'!!!!
12:48:57 From Chana Hershkop to Hosts and panelists : Love that!
12:49:03 From Meryl Schaffer : Hospital nurses & pharmacists need to learn this concept ALSO!!!
12:50:09 From Deborah Bratcher : Absolutely! We MUST be our own advocates bc somehow our system allows problems with RX to RX problems too often.
12:51:20 From Deborah Bratcher : Yes, thank you so much Ginger & Steve!
12:51:57 From Meryl Schaffer : We all need to pray that Covid never happens again. My husband calls what families do is called RUN INTERFERENCE.
12:52:23 From zahida hasan : good talk, love from Queens, zahida
12:52:47 From Angela Wyckoff : Yes, as long as you let the lender know you will be away, you can retain the reverse mortgage.
12:54:40 From ellen belk : Steve - have you heard of the Geriatric Depression Scale? I can send you a PDF of it or it can be Googled - Undiagnosed and/or un-treated Depression can ABSOLUTELY mimic Dementia
12:55:45 From Rita Sherman : all nursing homes are not equal unfortunately
12:56:45 From Meryl Schaffer : Yes Rita, I agree, The staff can make or break the environment.
12:57:29 From Rita Sherman : who is Ginger's hero who had Lewey body?
12:57:44 From Monique Harkless : Robin Williams
12:57:48 From ellen belk : She said Robin WIlliams.
12:57:54 From sharon egitton : SO many need to hear your story, Ginger! There's so much to be learned from your experience. I will be sharing your amazing story and thank you for sharing it! AMAZING!!!!!! Keep your positivity...it's contagious!
12:57:57 From Leslie McTyre : Truly amazing session - thank both of you!!! What aa pair - Steve and Ginger!!
12:57:59 From Rita Sherman : thx so much
12:58:11 From mary busse : Her recorer is miraculous and inspirational!!!
12:58:12 From Meryl Schaffer : This is the story of all stories.
13:01:52 From Meryl Schaffer : As we all know, there are some meds that take a longer amount of time to kick in & do what they are supposed to assist in removing issues.
13:02:00 From ABIOLA BAJERE : Thank you, Ginger for sharing your experience, amazing. You are indeed an hero. Thank you Steve. This is very inspirational.
13:03:18 From Carolyn Cook to Hosts and panelists : Ginger you should be testifying before Congress who seem to be in complete denial about the dementia crisis and how it impacts patients, families, caregivers, etc… You are truly inspirational! Thank you so much Steve for your time, energy and generosity to give the gift of these webinars to us all!
13:04:47 From Deborah Bratcher : Gotta go - thank you both very much, Great info
13:05:38 From Rita Sherman : based on my childhood friend's end of life experience, the hospice and hospital she was in, they kept pumping drugs into her which made her vomit and get worse and worse. then her POA's took her to a friend's home where they removed all drugs but 1 pain med and she died 4 days later.
13:06:02 From Meryl Schaffer : Yes, she needs to testify in front of congress!!!
13:06:49 From Carolyn Cook to Hosts and panelists : Bravo! Standing ovation for Ginger and Steve!
13:07:13 From Tiffany Benton : Thank you so much for sharing!
13:07:14 From Donna Briggs : Thank u. You should get your memoirs published
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