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resultsassoc
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Journaling the end

Two weeks ago I had a serious seizure, was hospitalized for three days and diagnosed with adult-onset hydrocephalus. This explained my inability to maintain balance, the short seizures I'd been getting, and a bunch of other things. It is incurable, surgery can make it better but isn't much good at repairing existing damage, and can only slow down the inexorable progress toward dementia.

 

I cannot stay awake long enough to do any real work, nor do any writing. I can access and use existing information, I can acquire new information and use it, but creativity has simply stopped workiing. I have several novels underway, and I can't figure out what to do with the characters next. One couple is getting married soon so the baby can be born before the wedding, another couple is dealing with an assassination attempt on one of them, I've got a busload of musicians on tour in 1970; they're stuck in Mobile, Alabama, because I don't have any idea what comes next.

 

I can keep two executive coaching clients, and that's it. One project I've already turned over to the client's outsourced accountant plus my own VA; the other I will offer up to a friend, former top-tier global management consultant. The number of domains in which expertise is required is long.

 

I intend to keep journaling until I can no longer write. Ask my anything you wish.

137 REPLIES 137
aocumen
Community Manager
Community Manager

Bill, I'm so sorry to learn about this. There are a lot of research where it says music therapy helps with the disease. My father, who has dementia, has been spending his days with music booming either from his stereo, mobile phone, TV, or laptop. 

Hang in there, Bill!Robot Happy 


~ Avery
Upwork

Bill --

 

Just very, very sorry. I wish that words could help.

Bill, I am so sorry.  Life can certainly throw curveballs at us.  Maybe this is the universe's way of telling you/ forcing you to stop and smell the flowers.  You are in my thoughts and prayers.

mystudiomke
Member

Bill,

 

As everyone else in thread I am sorry to hear about this and hope that you do continue journaling as it seems to be your thing (you appear to be a great writer from your upwork profile). You did ask for questions and I would like to take you up on that. My questions is: looking back was there anything you would like to have done differently?

 

 

 

 

Lila
sergio-soria
Member

I am so sorry about this. Take it easy and if writing has become difficult just do some other stuff you like. Having a pet, listening to music, etc. could help. Just enjoy your days, don't let this put you down.

 

Sending my positive vibes to you.

Bill, I am so sorry to hear about your health. 

You are a brave man to share this, and I wish you continued strenght and good spirits for your fight ahead. 

jolash
Member

Bill, like Janean said, I truly wish words could help. I wish you all the best going forward, I am also sending out positive vibes and just want to let you know, you are not alone.
versailles
Member

Bill, I'm frakking sad to learn this. And angry. But then, angry at who?

 

We haven't always seen eye to eye about politics and, what now seems to be a long time ago, we have explored some business ideas together, with few others.

 

As someone who had always lacked creativity, I envy you for having had so much and I hope you will somehow manage to fight this for as long as possible. It's a good idea to write about it. I don't know, maybe it helps.

-----------
"Where darkness shines like dazzling light"   —William Ashbless

Bill,

 

This breaks my heart. Supremely sorry to hear this is happening to you. I've thoroughly enjoyed your posts on the forum. I wish there was more I could do to help take this from you and bring you back to optimal health. If only my words could be that magical. 

Bill, 

I can only echo what others have said here; if words of encouragement and prayers for you could bring your health back, I would write a couple of million words and pray ceaselessly. And I agree with Rene- writing about this yourney is probably a good thing...

Many thanks to all the well-wishers. As for regrets, none. Each decision made was part of a chain of events that resulted in meeting and marrying my wife of nearly 50 years, and having two amazing adult daughters. The first regret that popped into my mind when reading your question was failing to visit my high school Principal one day earlier, which would have allowed him to change his will and leave me with all the funds needed to go to my dream school for a bachelor's in music. He died later that night the day I saw him. But, had he not, I would not have attended to college where I met my wife.

 

I'm an auditory and a classicly-trained musician. I can't have music on in the background, and when I listen it's to the orchestration, the individual parts, the use of harmonies and dissonance, vorimitation, and the list goes on.

Dear, dear Bill,

 

You are just the bravest. I remember all you went through in the Elance days. You have my email so please write whenever you want. 

 

xoxo Nichola

Dear Bill,

 

Really sorry to hear about your condition.

 

I wish you all the best.

 

"Certa bonum certamen"

Bill, I'm in tears - again. 

 

Like Rene, I've known you a long time during which you helped guide a fledgling business idea; shared much wisdom about FLing and, more importantly, life; eloquently expressed the agony and exhilaration of publishing you first of numerous novels - and so much more.

 

Our words offer solace perhaps; your journaling offers much more.  Keep it up. Record your thoughts if you hands get tired. Your bride of 50 years and daughters will treasure it.

 

If you believe in good vibes and karma please know I'm sending you loads of both.  Only a Skype away -

W

Well, Bill -- I am continuing to enjoy your thoughtful, quirky, multi-directional, highly entertaining, and even philosophically intriguing posts!

Another lesson in perspective. All of the petty nonsense we worry about day in and day out. The stuff that annoys us. The stuff that scares us. The stuff that keeps us up at night. Too busy to spend time with family. Too irritated when the kids interrupt our  "critical" work. The list goes on. Occasionally real-life events of real people come to light and a ray of perspective shines through. In that moment we realize that absolutely everything that upset us  today, this week, this month, etc., is complete nonsense that will be forgotten as soon as the next "crisis" hits. None of it is important. None of it really matters. Too many of us (myself definitely included) fail to hold on to that perspective and too soon fall back into the daily abyss of concentrating on all the wrong things in life. However, occasionally these stories stick and someone is able to make an important change in their life. 

 

Thank you Bill for sharing your story and for helping anyone who reads it to understand, if even for a short-period, what might actually be important in life. However, it's clear that you have more to contribute. Maybe it won't be at the pace you are used to delivering it, but another lesson here is quality over quantity. Here's to you continuing to deliver quality whether that is with your family, executive coaching or contributions like this post here. The journey will continue. There is more yet to give. 

 

 


@Bill H wrote:

Many thanks to all the well-wishers. As for regrets, none. Each decision made was part of a chain of events that resulted in meeting and marrying my wife of nearly 50 years, and having two amazing adult daughters. The first regret that popped into my mind when reading your question was failing to visit my high school Principal one day earlier, which would have allowed him to change his will and leave me with all the funds needed to go to my dream school for a bachelor's in music. He died later that night the day I saw him. But, had he not, I would not have attended to college where I met my wife.

 

I'm an auditory and a classicly-trained musician. I can't have music on in the background, and when I listen it's to the orchestration, the individual parts, the use of harmonies and dissonance, vorimitation, and the list goes on.


 Wow, I just got goosebumps... that is a lovely story... I just love stories of long marriages...

Bill, I ditto everything everyone else has previously stated.  At this point I'll just add one more thought.  To the best of my knowledge you've always been a definite force.  Continue on that path.

Bill, Echoing what everyone else has said. I'm so very very sorry to hear about this. It's not over, you are now writing and living a different chapter in your life's story. As interesting and rewarding as it has been, so will this new chapter be. Now it's time to reflect on what's ahead, slow down, and share this time with your wife and daughters. 

I hope, that you will continue to pop in here and tell us how things are going. All of us here, DO care.

m_terrazas
Member

The truth, I do not know what to tell you.
I just wanted to be here to support you.

Be strong, take advantage of what you have!

A hug!

Sending you much love, hope, and miracles, Bill...

Thanks for all the posts. I'm further behind than I was when I first started the thread.

 

I decided not to see the neurologist who treated me in the hospital because his English was so poor we couldn't communicate. Instead I saw my regular neurologist. He had diagnosed me with partial complex seizures, "spells" I get where I have no points of reference, don't know where I am or what I'm supposed to be doing, along with loss of balance. They always started clearing very quickly and disappeared shortly, until the one in early October. What a waste.

 

Without looking at the MRI he said I didn't have hydrocephalus at all and I wasn't having seizures. He said the long "spell" couldn't be a TIA because I'm on anticoagulants. That's not only wrong, it's scary wrong.He had diagnoserd seizures before, but ruled them out this time because I was aware during them. I had related being aware when he diagnosed seizures; now it means I don't have seizures. I only have these when standing. So, he decided it was all due to hypertension. The man's an idiot. Orthostatics consistently show my normal reaction to prone, sitting and standing - BP drops and pulse rate increases. The next diagnostic test is a spinal tap, but he won't do that because I have to go off anticoagulants to do it. My cardiologist is fine with me going off anticoagulants for diagnostic purposes. The guy is a danger to his patients.

 

I'll see the hospital neurologist and the practice manager, who has worked with him for a long time and understands him, will translate. He has a plan, which is a thorough neuro workup, a spinal tap to determine cerebrospinal fluid pressure and presence of any contaminants, and referral to a neurosurgeon for evaluation of suitability for a shunt. The "spells" continue, and I continue to need a minimum of twelve hours sleep per night. Actually did three hours work this past week.

 

 

 Wow.   Just...wow.  My DIL is dealing with a neurologist and an ophthalmic neurologist, as well as several other doctors because she has developed blinding headaches and double vision, as well as a bout of pancreatitis last week.  Diagnoses run from vitamin deficiencies due to a 10 year old gastric bypass (some vitamin which can't be measured by a blood draw) to a brain aneurysm (confirmed, but apparently not an issue) to ??  I wish I could go to Wisconsin and get all of them in the same room at the same time.

 

Anyway, I think  your plan of action is wise.  Dump the old neurologist for sure.  You might even want to get another opinion.  Spinal taps aren't nearly as bad as they make them appear on TV.  And shunts are fairly easy surgery I believe and extremely successful.

 

Best of luck.  Keep on keepin on and thanks for keeping us in the loop.  Prayers and fingers crossed.

Echoing Mary.

 

Fingers crossed. Prayers (because I do that).

 

Would you consider a trip to Mayo or the Cleveland Clinic or a similar top-notch all-inclusive/all-specialties-cooperating U.S. facility?

Bill, your regular neurologist is a public danger. Considering how much they charge, this is also a  shame. Maybe the no-English has actual medical skills?

-----------
"Where darkness shines like dazzling light"   —William Ashbless

Bill, asking for a translator as needed might be the darn smartest thing you've done to date.  Along with firing your regular neurologist. 

 

When do you see the original neurologist for a confirmed plan of action?

Bill,

 

If you have to have a spinal tap make absolutely sure that you have it done under xray conditions. My own experience over the last 20 years has been 14 taps. Some were OK; some most definitely were not. The more painful ones were recent. Bones/spines change with age, so make sure you have yours done under the care of a radioligist who knows what they are doing and,more importantly, where they are going. 

 

Please take my advice on this. Keep fighting soldier ...

Thanks all. I see my cardiologist tomorrow. He is part of the same medical group as the fired neuro. We discuss medicine as peers and I'll let him deal wth the fellow.

 

I see the original neurologist Friday 16 Nov. Pain following a spinal tap is often caused by discharging the patient without adequate time lying down in supervised recovery plus failure to overhydrate.I'll ask if an interventional radiologist can do this one. Thanks, Nicole.

Bill, sometimes, going to doctors in the same medical group isn't the best option. Check out U.S. New's best hospitals (that deal with your condition) For routine care it's ok to stay with doctors in the same medical group, but when the situation is more serious, or complicated, it's best to seek out doctors in well know hospitals who specialize in conditions such as yours.

 

For specialized care down here in FL, I have gone and continue to go to Cleveland Clinic and UHealth (University of Miami) and wouldn't think for a second of going anywhere else.

University of Chicago Hospitals and Clinics is superb regarding neurological issues and many more.  I have first-hand knowledge regarding this as my Mother and I both had neuro challenges.

More thanks for more advice. I've decided to take all of it, which will require 37 years. By then I'll be 107.

 

The cognitive difficulties have started. I couldn't remember the term 'cardiac arrest,' and later this week I couldn't remember how to spell cholecystectomy. Those could be flukes. I find prolonged standing difficult; spent 90 minutes getting through security at the airport and collapsed in a chair near the gate. I got a fellow passenger's attention, but he didn't speak English. Fortunately, he and his delightful wife were Italian and I said I wanted a cold coca cola but could not walk well and held out a $20 bill, and said they were welcome to get something for themselves. They were seated in the row in front of me, and proved why everyone worldwide loves Italians.

 

My offline client's choice to run his plant turned down the job the day he was supposed to start; we interviewed four or five candidates, a Colombian expat was extraordinary. His General Contractor showed up and he left nervous. I discovered he asked my young and naive client if he wanted the GC to use one of his engineers, which would require charging 15% more, or if he wanted the GC to recommend someone my client could hire. Of course he wanted the huge savings. It turns out the engineer is a GC employee who keeps running up the bills and makes no progress. I told the GC that henceforth his employee would report to him, receive instructions only from him, be paid by him, and my client would no longer be responsible for things that went wrong with the design. Basic ethics: give a client a choice and explain the consequences. The consequence was that my client was held responsible for anything that didn't go right. That's over. The huge discount amounted to about one percent of the project cost. And raised the cost 20%.

 

I'm sorry to hear that so many of you have had sad stories. None of us knows what others suffer, and I've been incredibly lucky in my own life. I've worked with, and argued with, a number of you, and I have been told Upwork is considering establishing a Curmudgeon Award in my memory. To be awarded posthumously. As soon as possible.

 

Take care.

Shared pain brings people together.  It's very unfortunate that oftentimes that's what it takes. 

 

Bill, I'm confident this is already your attitude regarding what you're experiencing so please just consider this a reinforcement:  FIGHT! FIGHT! FIGHT! 

Pat,

 

I'm not fighting anything. I realize that I am in the end stges of my life, and doing something painful, or long-term, or suspect, isn't the answer. My general health will take me soon enough. I had a vision (no other word seems to describe it) when I was twelve that I would die on a Tuesday in September 2033. The vision was in French; not sure that means anything.

 

Went to a Craig Morgan (country) concert last night, enjoyed it. When walking in a crowded place I need help to prevent falls. But, if someone is holding onto me and trying to lead me somewhere I need to find my own balance.

 

UW told me I was to be the featured contributor for December and asked me to fill out a questionnaire. Comes with a box of free UW swag, which is neat. At the same time my profile is set to private because I haven't billed anything for thirty days. Kind of funny. I'm giving up traveling for work; the last trip was two days and exhausted me. Fortunately, on the plane back home I was moved from row 26 to row 21 because the substitute airplane ended at row 25.

 

Surrounded by an extended family from Boston, all Irish, all drunk and funny. My seatmate pointed out his sister, future brother-in-law and father. My seatmate was about 45 and white, and probably adopted. The father he pointed to was in his early 20s and quite black. I'm rambling, a sure sign I've already written at least two paragraphs too many,


@Bill H wrote:

Pat,

 

I'm not fighting anything. I realize that I am in the end stges of my life, and doing something painful, or long-term, or suspect, isn't the answer. My general health will take me soon enough. I had a vision (no other word seems to describe it) when I was twelve that I would die on a Tuesday in September 2033. The vision was in French; not sure that means anything.

 

Went to a Craig Morgan (country) concert last night, enjoyed it. When walking in a crowded place I need help to prevent falls. But, if someone is holding onto me and trying to lead me somewhere I need to find my own balance.

 

UW told me I was to be the featured contributor for December and asked me to fill out a questionnaire. Comes with a box of free UW swag, which is neat. At the same time my profile is set to private because I haven't billed anything for thirty days. Kind of funny. I'm giving up traveling for work; the last trip was two days and exhausted me. Fortunately, on the plane back home I was moved from row 26 to row 21 because the substitute airplane ended at row 25.

 

Surrounded by an extended family from Boston, all Irish, all drunk and funny. My seatmate pointed out his sister, future brother-in-law and father. My seatmate was about 45 and white, and probably adopted. The father he pointed to was in his early 20s and quite black. I'm rambling, a sure sign I've already written at least two paragraphs too many,

___________________________________________________________________________

Bill, I understand and certainly respect your decision.  It's your life; you're the only one that can really make those decisions. 

 

After my husband (also a Bill 🙂 ) and I've seen numerous loved ones go through many health situations and treatments throughout the years we've vowed that we'll never go through some of the same things some of them did.  However, one never really knows what they'll do until they're diagnosed.

 

As I know you know, Bill, you can still fight by pushing yourself and being the best Bill that you can be.  From things you've posted in the past I'm confident that you will travel that course. 

 

I'm not familiar with Craig Morgan but so glad that you enjoyed the concert!  As you know, there are many things you can continue to enjoy. 

 

LOL regarding your Private Profile yet going to be the Featured Contributor.  As you well know regarding Upwork many things seem to be oxymorons at times. 

 

Also LOL regarding the airplane rows.  Well, I guess they could have strapped a rocking chair on top; and you could've ridden like Granny Clampett rode in the truck in The Beverly Hillbillies-haha.

 

Glad you're surrounded by loved ones.  You're not rambling Bill; you're sharing, and there's a definite difference.  Please continue to share with us as absolutely long as you possibly can.  We'll welcome it.    


 

Bill, you do know you've just penned the opening chapter to a new book ...

 

"Fortunately, on the plane back home I was moved from row 26 to row 21 because the substitute airplane ended at row 25.

 

Surrounded by an extended family from Boston, all Irish, all drunk and funny. My seatmate pointed out his sister, future brother-in-law and father. My seatmate was about 45 and white, and probably adopted. The father he pointed to was in his early 20s and quite black. I'm rambling, a sure sign I've already written at least two paragraphs too many."

 

Possile POV's  - 

A reporter? A frustrated screen writer?  An even more frustrated literary agent?

 

 

Bill, I’ve stayed away from this thread because anything I write would be inadequate but be that as it may, hang in there and carpe diem.
__________________________________________________
"No good deed goes unpunished." -- Clare Boothe Luce

John, most things offered to someone either dying or in a relationship crisis are inadequate. That's perfectly fine. I went to the original neurologist today. He learned I had done med school, my wife is a de facto LPN and my daughter a surgery-qualified vet tech, and stopped trying for simple explanations. I reviewed the MRI and he's right. Fifty percent of my brain is now CSF.

 

I got pre-clearance from my cardiologist for the LP, and gave his info to the nurse so she could verify it. If LP improves symptoms, then surgery shunt is next year. If it doesn't, I'm possibly screwed. I felt heartened after today's visit. My wife and daughter were impressed that there's a plan in place, and that the neurologist wants to try this plan before considering alternatives. He'll develop Plan B if needed.


@Pat M wrote:

Shared pain brings people together.  It's very unfortunate that oftentimes that's what it takes.

 


That is SO true. And so unfortunate that oftentimes that's what it takes, as you said. The other thing that happens, is that some of the people will just disappear.

When after traumatic things happened to result in me being pregnant all by myself instead of me and my husband, half of my family (plus two of my dogs) died (three family members), got injured to rest of my life and all this in two years (raising my daughter totally alone at the same time), three things happened: some of my friends got even closer, some disappeared. The third one was, that I got close with people that were not that close before. And made totally new friends with similar experiences. Happy about that, but yes, it took very traumatic things to happen in a short period of time.

 


@Bill H wrote:

More thanks for more advice. I've decided to take all of it, which will require 37 years. By then I'll be 107.

 

 


Bill - my Grand-Aunt is actually 107, so don't think this isn't possible! She would likely refer to you as that nice young man with interesting stories to tell. Smiley Happy