Mel’s Health Updates

Monday, September 5, 2022 (Labor Day)

Update on Mel from Gary:

Let me begin by saying how sorry we are that Mel’s health updates have
been few and far apart.

Mel’s symptoms from the original Parkinson’s diagnosis have progressively become worse.

On June 26th, we flew to the Mayo Clinic in Rochester, Minnesota to work with several specialists for 5 days with tests being conducted each day.

Here is a summary of Mel’s diagnosis:

1. Probable dementia with Lewy Bodies.

2. Probable Alzheimer’s disease.

3. Mild Parkinsonism.

4. Levodopa-induced nausea.

5. Severe Gait Apraxia.

6. Atrial fibrillation.

7. Heart failure.

8. Normal Pressure Hydrocephalus.

9. Adjustment disorder with anxious features.

10. REM sleep behavior disorder.

Since returning from Rochester, Mel can not walk unaided and he needs
help getting in and out of bed, on and off of a chair or sofa, in and
out of the car, and on and off the toilet, not to mention bathing.

His memory is fading more and more with each day and his voice quivers
as he runs out of air before he can finish a thought and his arms and
legs have no strength to support any part of his body.

This has become our new normal.

On a brighter note, Mel loves the pool so we have installed a pool chair
which allows him access to the water.

Gary

Thursday, June 9, 2022

Mel’s latest medical report, sorry this report is way overdue. I was tested again…. CTSCAN, MRI, DATSCAN. My local doctors can’t figure out what’s wrong with me.

So June 26 Gary and I are flying to Rochester to begin testing all over again at the Mayo Clinic. I’ll try to write again 6/27 or 6/28 for an update.

good news Today I walked about 100 yards at the Eisenhower hospital here supported but only slightly. Today I did my “get out of a chair exercise” 18 times loosely supported by my physical therapists

If the next big earthquake comes, I have 18 tries to get off my chair and about 100 steps to escape the collapsing Roof.  Let’s hope Gary will be very close by.

Thursday, May 12, 2022

…Back in the hospital again!

Monday with streptococcus (sore throat) and Normal pressure hydrocephalus (sore brain).
However, neither of those two diseases are the problem.

My neurosurgeon and my 2 almost local neurologists don’t know what I have so they’re putting me back on Parkinson’s medicines which doesn’t seem wise because I was on it for two years with no results.

it’s used to diagnose Parkinson’s so if the medicines work you have Parkinson’s if they don’t work you don’t have Parkinson’s. For 2 years they didn’t work. So I don’t know why they’re putting me back on that drug. One of them said to me “we just don’t have anything else to offer Mel”

So I said let’s treat my symptoms until you find what’s creating them. So I’m in the hospital for three days to see if I’m healthy enough to go into the Eisenhower rehab center.

Today the hospital’s occupational nurse said “your Only problem is you may be too healthy to be accepted. Our rehabilitation center takes people who are paralyzed from strokes and heart attacks and other things and you’re just too healthy to compete.

So I’ll probably hear their decision tomorrow and will let you know….

Oops. Just talked to the head dr at the rehabilitation hospital . He said clearly “ you have no disease that can be treated. Our rehabilitation facility only admit people who are very sick PLUS THEY Need US TO WORK SIMULTANEOUSLY WITH PHYSICAL PROBLEM
In other words, I don’t qualify to go to the rehabilitation center here. So the suggest…

Option 1 do exercises 4 x daily /faithfully that they provide photos describing exercises.

Option 2 get a neurologist that can diagnose what’s going on with me physically and see if I have a disease they can treat.

On the surface, I am terribly disappointed but the verse most pertinent is “All things work for good for those who love God and work in God’s service.

Something good will happen. Even out of this bad!!!

Mel

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Tuesday, April 26, 2022

Latest from Mel:

As of Tuesday 26 April, there is good news and bad.

First the bad: The shunt is not working. The spinal fluid is still flooding my brain, weakening my body and crippling my arms and legs.I can’t do anything on my own. Gary has to lift me into and out off bed. I fell again and pulled the muscles on the right side of chest. Every little attempt at moving hurts. The doctors have decided that there is something else working against me so yesterday. The tests all begin again.

Second the good new: for a man whose time seems to be running out, I’m happy and grateful and surrounded by friends and family. And totally confident that I’m safely in God’s hands whatever comes next. I’ll probably out live you all but if I don’t, I’ve had 81 great years and for any and all you’ve contributed to those years….I AM GRATEFUL!

April 30 the new tests will be finished and a zoom call with the doctors will give us a lot more information to consider.

Luv! Mel

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Monday, April 4, 2022

I must be such a wuss. And I don’t even know how to spell wuss but after a recent fall my ribs got to hurting so bad I thought I had broken one.

So We went back to emergency last night and stayed until 2:30 am to go through x-rays and CAT scans again.

fortunately I didn’t break anything, that could’ve been really bad, not even another brain bleed but I have an internal bruise on one side the length of my lung. internal bruise? Who knew?

every time I move I felt like screaming…At lest groaning. Last night I groaned at every bump in the road.

Gary in his own sweet way finally said “oh shut up” and after being shocked  by his sudden change of pace we both laughed. Actually He laughed. I groaned. all the way home.

The hospital only distributes Tylenol for pain like mine. Now because I fell, the doctor says I can’t do anything or move anywhere without Gary.

Actually how lucky is that. Now I don’t feel so bad when people see me staggering along beside my husband and whisper“ You have a very handsome son.”

I was just beginning to get out of bed, dress myself, etc and the iron curtain falls again. I didn’t even know you can bruise yourself internally and though it shows on my right side in the shape of the state of Florida, they assured me that the pain will stop in at least four weeks. Four weeks?

But all is well at least I’ve stopped groaning. Hope you are enjoying life. If not come groan with me. In the meantime I can’t do anything without this handsome “son” at my side.

Poor me, ha!

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Tuesday, March 22, 2022

Yesterday Gary drove us to Newport Beach to the Hoag Hospital at UC Irvine. We we’re looking for a second opinion regarding the implant  of the shunt in my brain. 11 hours round trip.

The shunt was expected to drain away excess spinal fluid which is really crippling me and leaving poor Gary dragging around 175 lbs of dead weight.  (See below for the painful details.)
The good news, the neurosurgeons agree that that the shunt was placed
perfectly. The bad news it isn’t working.
So my symptoms are worsening.

So now doctors begin the search again
CTScans, MRI SCans, DAT scans and endless blood and urine draws.  Now they’re guessing that I might have a rare Parkinson’s-like disease.

I’m grateful for all the sophisticated tests but had hoped they’d work the first time. Once again I’ve learned healing takes time.

Thanks guys for offering to remove the  roof tiles and lower me into my neurosurgeon’s office on a stretcher using ropes. He wasn’t pleased.

Thanks for including us in your prayers and sympathetic thoughts . God Doesn’t care how you send them.
Stay tuned.
Hugs from both of us

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Thursday, March 17, 2022

Yesterday, Gary and I drove to Riverside to see our neurosurgeon hoping for good news.  After at least $10,000 in CTScans and 3 months of waiting we learned that my shunt is too dangerous to open more than 25% without a very real danger of more serious brain bleeds and what short-term gains we make are gone in a day.

Our reality (again) is I can’t walk without Gary getting me into a rolling brace then walking behind me holding me up with a plastic belt, he has to dress and undress Mel, lift me in and out of bed, on and off the toilet, or a wheelchair. I’ve lost my ability to type. I type one finger at a time. I’m chair-bound all day and bed-bound all night.

The reason I’m telling this is quite simple. Tuesday we’re seeing another UC university neurologist in Newport if he sees no other way to treat this; and if I stay this helpless; and if I continue a 24/7 burden to Gary, and if my body and mind continue to deteriorate, or if have to move from Gary into an assisted care place, if my stammering gets worse so that I can’t even be understood, if my dementia worsens, I’m going to have a serious decision to make and I’ll need my friends and family informed and up to speed to help me make it.

I refuse to spend the rest of my life unable to move, to think, to understand, to recognize friends and family, to rock back and forth on some isolated porch.

I Thank God for 81 wonderful years and if she grants me more wonderful years, I’ll be grateful; but for all of those 81 years my life has been in God’s hands and I’ll not place the rest of my life into the hands of doctors and pharmacists.

The decision may be a long way off but for Gary and me the time may be rapidly approaching.

Love ya’ll
Mel

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Friday, March 4, 2022

The shunt is working. And just 6 weeks ago I’d never heard of a shunt let alone been told that a neurosurgeon would drill a hole in my skull to place it directly in my brain let alone that The surgeon turns it off and on with a magnet.

Already I’m feeling better. Visited the neurosurgeon 2 days ago hoping for major change. “How long have you been sick?” He asked. “It will take you similar time to get well.”

I’m ashamed to admit that with so many people praying and even more sending best wishes, I imagined I’d be well in a flash. I guess it doesn’t work that way (at least in my case.)

Apparently it will take 6-10 months to rebuild the “muscle mass” I’ve lost The symptoms are still making life difficult but the healing has begun. Thanks for the part you played in that. Your notes really made a difference. In 3 weeks I’ll have a new report but until then Gary and I are grateful!

Hugs,
Mel and Gary

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Wednesday, March 2, 2022

I’ve just returned from the “important” appointment with my surgeon. It turns out that hydrocephalus is not the root cause of my current symptoms. It’s something else that is crippling me. We’re returning to original neurologist for more testing. My neurologist that implanted the shunt implies that I took the surgery too late in life and that the yet un diagnosed old age problem is where we go for answers. It’s not a happy day.

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“Fat Tuesday”, March 1, 2022

Today at 10:30 am my neurosurgeon will use a magnate outside my skull to open the implant shunt inside my brain to see if the extra spinal fluid is draining into my abdomen. Stay tuned. Fearing procedure will cause a second brain bleed or just not work. That Wouldn’t be good because that shunt is the only solution I have for this disease. I’m not worried but my curiosity is on high alert

Saturday, February 26, 2022

It seems like every 24 hours my hydrocephalus gets worse. The extra spinal fluid is putting pressure on my brain and everywhere the pressure is applied some normal physical or mental function slows or stops.

For example I can’t walk right now Even with my huge rolling walker. Gary has to lift me into bed and out of bed again and in the night I can’t even put my arm around him because my body won’t allow the movement.

Because both my hands shake so much nothing will stay on the spoon or fork so Gary has to cut my meals into mouth-sized portions and I wear a Bib at Every meal.

Dementia is setting in. I stutter and stammer. I feel my vocabulary words just slipping away And when I enter a conversation I often speak gibberish.

I’m supposed to pee in that tiny plastic container but this morning it got away from me. I think I’d be a great volunteer fireman although Gary wasn’t pleased with the mop-up that followed.

All this to say that my hydrocephalus is not being treated because the shunt can’t be turned on until signs from the old brain bleed clear up. Thursday the surgeon said “let’s wait 30 more day to see if the brain bleed disappears.” He hadn’t seen what the disease was doing to me or that I could die if the wait didn’t end soon.

Hydrocephalus kills people silently. Their body loses its strength, the lungs and heart quit working, and the hidden miles of pipes carrying blood and water and waste just dry up

Yesterday as my symptoms worsened I began to realize that I could be just a few days from death or with my shunt working I might live another 80 years.

Thinking I might have only days left really made it clear that I should take time on the important stuff. I’m writing letters to family and friends. I’ve even written a very intimate letter to the man Who will replace me as Gary’s new partner or lover or roommate explaining the qualities of this amazing man and warning him to take good care my husband of 40 years or watch out for a very angry ghost.

Now we wait until Tuesday to see what happens next. Live or die our lives are in God’s hands. So join us in celebrating life while we have it without fearing what comes next.

Hugs to each of you and thank you for your prayers and best wishes!

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Tuesday, February 22, 2022

Not good news. The doctor warned me way back at the beginning not to have the brain surgery. He said, “At 81, you’re too frail and with other major maladies (congestive heart failure and atrial fibrillation) it’s too dangerous.”

Then he admitted there is no other way to treat hydrocephalus except the surgery. Hard choice but I chose life. Looks like the doctor was right about the risks.

My brain bleeds are not healing well. So the surgeon couldn’t turn on the shunt to drain off the excessive spinal fluid. And that overflow is crippling me in body and mind but not in spirit.

All he could do today is send me home to wait another 30 days to see if the brain bleeds heal enough during that time to turn on the shunt and hopefully relieve the pressure on my brain to slow or even stop the symptoms.

If the brain bleeds don’t heal after 4 weeks, he will drill another hole in my head to relieve the pressure and see what happens next.

The surgeon made it clear. “Your days are limited. Enjoy each one of them to the full.” Now it’s a race to see if the shunt gets turned on and the crippling stops or in those thirty days, I get a lot closer to the end of this life and the beginning of another.

There is hope. Of course. And I’m going to grab hold of that hope and hang on tightly even if my mind and body fail.

Let’s face it. We’re all hanging on to hope. The only difference is Gary and I are determined to enjoy the days we have left even though we can hear the clock ticking.

So here’s the only news we have. Gary and I will wait another 4 weeks for better news. Thank you for the prayers and positive thoughts you’ve sent our way but if we don’t get our miracle we’re going to enjoy every day we have left knowing our lives are in God’s hands and who could ask for more?

Luv you,
Mel and Gary