Dear Family, Friends and Loved Ones,
Thanks for being here. As many of you know, I have developed a rare and serious neurodegenerative condition called \"PSP\" (Progressive Supranuclear Palsy.) It\'s a brain disorder that impacts the entire nervous system. This is a degenerative, chronic condition, which means it gets worse over time.
No one knows the exact prognosis -- but I am in the advance to late stages of this chronic disease.
PSP is a tongue-twister of a disease name & despite the fancy diagnosis & empathetic & astute clinical care from UCSF neurologists since May 2008, there is no cure, no treatment. Though I do go in for check-ups every three months or so...
It\'s also a very fast-moving condition that no one understands very well. The cause is unknown though research scientists are working hard at cracking the code. Symptoms vary amongst patients. Think of it as a variant of Parkinson\'s, an atypical Parkinson\'s, in my case (without the tremors.)
It\'s important to realize: While PSP is often cited as an offshoot of Parkinson\'s -- in our experience, PSP MANIFESTS itself MUCH MORE like ALS (Lou Gehrig\'s disease) with its body & muscle & strength crippling aspects, Parkinson\'s slowness/stiffness/coordination troubles, along with cognitive elements of Alzheimer\'s/dementia.
For me, the first five to seven years my changes were slow, subtle and cognitive (trouble with directions, word finding, confusion, etc.) However, in mid-2007 PHYSICAL changes came on very suddenly and dramatically. I began falling often and breaking bones. (Kaiser had me on the wrong bone medication: Fosamax which didn\'t work for me - and they refused to replace with the better action/effective Forteo.) Tipping or leaning sideways and falling backwards is common. I began speaking much more slowly, and moving much more slowly and deliberately. PSP affects gait, balance, stability and the gaze of the eyes..... I must have gone to the emergency room at least 10 to 20 times from mid-2007 to mid- 2008 with fractures, breaks, bruises, and a couple of black eyes! Sometimes I would just fall down like a baby on the carpet but couldn\'t get up nor could I call for help -- almost as if I were mute. It became terrifying. I never knew why I was falling down -- and did not recognize, at first, that it was becoming a pattern.
The falls seemed to come out of nowhere, for no reason.... \"I don\'t know what happened. The wind just came and knocked me over,\" I told my daughter Laura who immediately rushed over to see me splayed out on the street in front of our house with a bloody forehead and unable to get up.
The pace of change in our lives, especially, over the past four years has been mind-boggling, terrifying, dizzying and smack-up devastating.
The tectonic plates of life as we knew it were breaking apart as never before.
And, no one, including the \"experts\" ever gave us a \"scenario\" of symptoms -- what could we expect? What was the trajectory about to unfold? Either they didn\'t know or didn\'t want to say....
Turns out, we just stumbled into our new, new reality. Literally.
From mid-2007 to March 2009 -- that\'s just over a year and a half\'s time -- I broke both hips (separate times) & shattered my lumbar spine - after falling backwards off the steps in our home on October 28, 2008 & experienced 75% stenosis (or narrowing) of my spinal cord at L-3.
As many of you are aware, Kaiser sent me home \"for 12 weeks...\" with a bottle of painkillers when instead what I really required was a major neurosurgery to repair my broken lumbar spine. For nearly three days, Kaiser doctors were non-repsonsive and didn\'t allow or ok any high-res medical imaging, i.e. MRI & CT-scan which the injury/condition demanded. After intense lobbying and effort, and a series of blunders, my daughter Laura finally, on the advice of two neuro specialists, took me from Kaiser\'s ER and transported me to UCSF E.R. where immediately the med techs put me on spinal protocols and began the emergent triage....
Eh, a long drawn out story - but essentially, I was in a spinal surgical wing of a hospital for three months. After a series of surprise LATE-NIGHT DISCHARGE attempts (actually illegal per Medicare) they let me out prematurely with a raging staph infection and the process of ambulance, ER, and hospitalization started all over again after being discharged back home.
Then I began to recover wearing a back/body brace at home for 3 months... I thought i had nearly recovered and could walk hunched over with a walker & then bam! One night i fell (while sneaking to the kitchen for a snack!) and broke my left hip.
This is where the story really spirals. The lowdown:
IN A MATTER OF MONTHS -- 20 to be exact -- I went from a walking, talking rather able-bodied, outgoing, energetic and chatty senior to a profoundly disabled, wheelchair-bound person who cannot walk, sit up, stand up or talk above a whisper. Grasping familiar things like teacups and forks, taking sips of juice, and dressing myself, bathing, grooming, getting to the bedside commode, and teeth brushing, requires constant assistance and attention.
And, oh yeah, when the brain doesn\'t work properly, it doesn\'t always send the right signals to body parts, i.e. it took over a year to figure out why I had sky-high white cell counts -- we couldn\'t tell where any infection was coming from -- turns out -- the bladder isn\'t fully contracting or emptying so I was building up too many \"reserves\" shall we say and chronic bladder infections were never going away.
So, now i have a full-time Foley catheter in, which alleviates, shall we say, everything. But it tends to get blocked at least once a week, so it requires constant monitoring -- otherwise the killer bacteria like MRSA and others that i picked up from a catheter at John Muir Hospital -- is still lurking in my bladder and could at any time go systemic -- but they are not -- for now. Thank God! Still, I have developed quite a bit of anti-biotic resistance, so it is IMPERATIVE that hygiene is pristine and that the catheter does not get blocked for any length of time....
All of this is simply to underscore my need for 24-hour care, which I have been receiving for about two years thanks to Ellie, my Tongan caregiver, who deftly attends to me like nobody\'s business and her co-caregiver, my daughter Laura who sefllessly shares shifts with Ellie. Oftentimes, the two work in tandem, tag-team style as there is so much to handle on the care side with me & the business side (trying to reclaim our lives from the chaotic past 4 with correspondence, battling unjust $11K insurance bills - and other outright scams from miscreant lawyers and \"health professionals\" -- even though I have medical coverage and fighting surprise night-time discharges from Kaiser (another story.)
Let\'s just say the accretive nature of this chronic condition, imposing medical care, physical therapy, intensive bouts of rehab (to prevent my body from stiffening up completely), financial & administrative nightmares, roadblocks, back taxes, and exploring alternative treatments that may provide some relief like scalp acupuncture at CPMC in the city has all been an incredibly intensive slog and wearingly exhausting for all.
With no blood family nearby (they are in Liverpool, England) and ONLY ONE CHILD (my daughter Laura) has shouldered ALL of the responsibilities ALONE for 4 years now from: medical care, to caregiving, advocacy, lobbying, medical appointments, decisions, coordination, bills, correspondence, going after rogue doctors and lawyers and hospital administrators, taxes, back taxes, cooking, shopping, cleaning, home physical therapy, entertainment (walks, talks, constant questions, movies, social engagements...)
And the challenges keep rolling in....
Where we are now: We are at a CROSSROADS -- probably the most crucial one of our lives. We have spent nearly all of our savings during the height of this disease onset and are now on the BRINK of either selling the home or getting a reverse mortgage to pay for my essential 24-hour care.
This puts us in a very precarious position -- one we never thought we would ever have to face: MY ILLNESS IS FORCING US TO LOSE EVERYTHING WE HAVE.
We need funds to provide for my ongoing caregiving, safety and health.
With this fundraising effort we are attempting to slow or stem the bleeding of cash, so that we can \"buffer\" ourselves -- while Laura finds meaningful full-time work -- and handles all of the steps associated with selling the house or getting a reverse mortgage so that my essential 24-hour home care continues without interruption.
To be sure, whatever option is next taken, it takes time to assess the best options going forward & even costs \"close,\" etc. Simultaneously, I need CONSTANT CARE combiined with daily needs and expenses & Laura needs to break away to handle these monumental decisions, negotiations with banks, real estate agents, advisors, and financial transactions on my behalf, and handle my caregiving when Ellie is away. We have not taken a vacation in about five years.
There is no time off - or weekends off.
Laura also has NOT been paid for any of the caregiving, advocacy, and lobbying she has done -- mostly totally on her own -- by herself -- on my behalf over the past 4 years -- nor has she been able to work full-time as before as a journalist.
MY CAREGIVING costs $4K per month. Ellie has kindly been taking a reduced salary to help us out and get past this very tough period.
Specifically, the money collected here will go towards paying for my 24/hour caregiving services (Ellie and/or an extra caregiver only.)
Supporters can also help by coming over in small groups or individually just to sit and hang out with me, sip tea, juice, watch TV, take me for a stroll, or out to eat, accompany me to the cinema, reading a book to me, send me a card with a personal note, or simply just listen to our fave music together and hold my hand and smile......
Healthy food is welcome, too, but I\'m requesting a temporary \"rationing\" of chocolates and sweets and hard candy and hard foods..... I recently had two teeth roots removed, though they are healing fine now & I\'m getting back into \"real\" proper food again!
PLEASE KNOW, this asking bit, request for donations, is impossibly hard for us, we don\'t want to be in this position, but life has taken many unexpected turns and twists, and we are indeed struggling, and we need your help. We are desperate and we implore you to SHOW UP here and now!
Whatever you can come up with -- taken in the aggregate -- it will surely buffer us practically and emotionally, now and in future moments to come....
And, in my heart, whether I\'ve seen or heard from you or not recently, I will know that we truly are \"extended family....\" as we talked about and recited for years and years since we all met in the early Swinging 60\'s.....
Your regular, ongoing in-person PRESENCE is requested -- even just \"being\"
Please also consider all of the times where Laura and I both SHOWED UP in your lives, your childrens\' lives, year-after-year, whether it was for a wedding, birthday, birth, divorce, funeral -- we were always THERE & whenever there was a fundraiser, a fun run, a bake sale, a baby or wedding shower, we were always there with gifts and monetary donations. Whenever it came to advice (life, husbands, kids, health care costs (Medicare), plain old phone empathy, whether to go on Kaiser or not, practical reasons to work at UC Berkeley, graciously hosting long-lasting and laugh-filled dinner parties and brunches and BBQs and handing over that amazing recipe for lemon bars or wine cake! Or even creative suggestions on where to vacation, namely: Pine Mountain Lake (Josie DISCOVERED this jewel -- where many of you spent many, many wonderful summers --LL)
(Please take into account the role Josephine has played in your lives. Now as never before, it is our our time of greatest need and vulnerability, and it is your opportunity to SHOW UP for her, --LL)
* All donations are tax deductible
* Donations can be made anonymously or not
* You can contribute via this site & do not have to belong to PayPal
* Donations have no limit and no amount is too small; multiple gifts = ok
* DONATION-SPECIFIC \"WISH LIST\" ITEMS - NOTED BELOW - (HOMECARE is #1)
* Share Jo\'s \"GoFundMe\" link to your Facebook, Twitter, and other sites!
* \"NEW\" friends are welcome to share their support & healthy wishes too!
Donations & Gift Cards can also be sent directly to:
507 Conejo Court
Danville, CA 94[phone redacted]
Thanks & Love to you all, Josephine xoxo