Sponsored

When it rains, it pours, and not about Iowa weather........

ShadowsPapa

Well-Known Member
First Name
Bill
Joined
Oct 12, 2019
Threads
247
Messages
40,504
Reaction score
54,031
Location
Runnells, Iowa
Vehicle(s)
'25 JTMX, '23 JLU 4xe, '82 SX4, '73 Javelin
Occupation
Retired auto mechanic, frmr gov't ntwrk security admin
Vehicle Showcase
3
Some of you likely caught my sage related to the ET (essential tremor, not the guy from out of this world) and the brain surgery - the trip back when things didn't heal and all.............
the local neurologist got the implants/electrodes turned on, and over the course of a few weeks, made adjustments and that resulted in probably 80% reduction in the hand tremors. Well.......... suddenly I go from 8 hours of sleep a night to 9 or 10 and needing naps, feeling totally fatigued during the day. I did some research and our own government - NIH - had a paper where they looked at several studies that showed DBS often resulted in fatigue. I presented this to my doctor at my next visit and he turned things down a bit (resulting in more tremor and more dropping things) but a bit less fatigue during the day - still sleep really long nights - but - it gets better. Can't fully judge yet because of another major change.......
My wife's new JLU came in and the dealer was a bit concerned because we'd expressed that the extra height might be a problem for my wife.
I know you've not met her - but due to a birth defect, she has one usable arm - her LEFT arm. And it is a tad shorter than it should be, and the elbow can't straighten out. She has no thumbs and only 3 fingers on each hand. Her right arm is about half-length, no elbow, and her right fingers are small and can't grip things and don't bend normally. So - she has to do almost everything with her left hand........ keep that in mind for this next part.
We go to the dealership, park the 23 next to the 26, and yes, EXACTLY 2" higher, but after some checking things out and using a small stool that was about the same height as the power steps would be on the new vehicle, she said a huge yes, she'd take it. So she was putting that stool back into the back of her 23 JLU, turned, and tripped over a tree root sticking out of ground, fell on her left side, face first, messing up her glasses, huge black eye - and SNAPPED her left arm right where it goes into the shoulder - broke the ball off the top end of the arm bone. So CAREFULY, I load her up into the Jeep and rush to urgent care - sure enough......... the doc put her arm in a sling and said that where it was broken, ER would do no good, so an appointment was set up with the ortho doctor the following Tuesday. This happened February - Friday the 13th.

Extreme pain, max tylenol and oxycodone didn't help much - Tuesday was a long way off.
The Tuesday appointment was 7:30 am, thankfully. The doctor there did another xray and we discussed options - one of which was do nothing (not an option for a person with one usable arm), the other was surgery, pin the bones - but no guarantee she'd gain all motion back. The other - shoulder replacement.
That was the best LONG TERM, life solution.
BUT - it wouldn't be scheduled until the following WEEK - so she had to live in total pain for a week before she'd even get surgery.
The doc saw our predicament, as we explained I had to do EVERYTHING for her - dress, restroom things, brushing teeth, all meals including feeding certain things, you name it, I had to do it.
Doc left the room and after a few minutes came back in and asked us to stick around - he called his nurse and had her clear his Wednesday morning schedule, rearrange other surgeries and set her up for surgery the next morning. That meant rushing for pre-op physicals, blood work and all with other doctors.
After the surgery, the doctor told me of the challenges - he said her structure in that area was different - a nerve ran close and tight along the shoulder joint and had to be held out of the way during surgery, and, it was like doing pediatric surgery - her arm bones were smaller than typical.

6 weeks in an arm brace, not to use or move that shoulder, but do remove it now and then to exercise the elbow and fingers. For those weeks - I do it all. This means I can't leave home for more than a couple of hours (restroom and so on) and meals, all of it.
2 weeks ago - it was one of my vestibular migraines and total vertigo. I went down to the floor, dizzy as hell, headache lasted almost a week, and the dizziness is finally subsiding. So there I am, taking care of her, can't bend over, dizzy and having to walk along walls................ so since mid-February - I've done nothing much - sticking around the house and taking care of things in here. Can't start anything that takes a long time as I never know when I'm needed................. stress levels through the roof. She can't do anything but sit and watch TV all day. Can't read because she can't hold books or pages or turn pages. She struggles to use her phone with her short right arm but does manage some texts now and then.

Luckily my neurologist gave me the ability to tweak the DBS a bit - a small bit, and even shut it down at night.
A couple of times, I saw such stupid things on the internet I wanted to punch someone - so I try to avoid the stupidity on the web much of the time.
Sponsored

 

S JEEPN

Well-Known Member
First Name
Steve
Joined
Jan 19, 2026
Threads
3
Messages
187
Reaction score
191
Location
San Diego County
Vehicle(s)
2024 Gladiator Mojave
Occupation
Road construction and maintenance supervisor
That is a lot to have come at you not much anyone can say to help except i hope things turn around for you sooner than later. One thing for sure you are lucky that you have each other to be by each others side and at least offer support to get through things. I inherited ET so i understand that part of it. Don't hesitate to check with your doctor to see if some at least part time home help is available where i live they have a few programs nothing wrong with asking for a hand when you need it.
 

ExpoGuy

Well-Known Member
Joined
Jan 22, 2025
Threads
7
Messages
70
Reaction score
55
Location
Los Angeles
Vehicle(s)
Toyota Tacoma 2003, 2025 Rav4 XSE hybrid
Occupation
Retired
I'm so sorry to hear about what you and your wife are going through.

I'm retired and my 80 year old sister lives with me. She's 100% disabled and I'm her primary
care giver. She has multiple health problems and can't take care of herself. Fortunately,
she has in home health care that provides caregivers and nurses to visit her a few times a
week. I believe most of it is covered by Medicare, although she also has Medicaid.

It's worth checking into and seeing what you qualify for, according to your state.
Having caregivers visit my sister makes a world of difference, and makes my job
much easier. Wishing you and your wife the best.
 

NC_Overland

Well-Known Member
First Name
John
Joined
Feb 21, 2020
Threads
18
Messages
3,385
Reaction score
4,161
Location
Raleigh, NC
Vehicle(s)
2020 JT Overland
I’m so sorry to hear that you guys ar going through this. I wish you had nearby family to help take some of the burden off of you.
 

Freems

Well-Known Member
First Name
Mike
Joined
Mar 13, 2023
Threads
10
Messages
882
Reaction score
1,212
Location
Boise Idaho
Vehicle(s)
2020 Gladiator Sport 2022 Bronco Sport
Occupation
Retired
Bill, Hang in there for you and the wife, better days are just around the corner!
 

Sponsored

YGBSM

Well-Known Member
First Name
Kevin
Joined
Oct 29, 2024
Threads
15
Messages
712
Reaction score
1,715
Location
Oklahoma City
Vehicle(s)
2025 Rubicon 392, 2024 2-door Rubicon X, 2024 Mojave X
Occupation
I fly da plane...
Sorry to hear this Bill. My best to you and your wife.
 
OP
OP
ShadowsPapa

ShadowsPapa

Well-Known Member
First Name
Bill
Joined
Oct 12, 2019
Threads
247
Messages
40,504
Reaction score
54,031
Location
Runnells, Iowa
Vehicle(s)
'25 JTMX, '23 JLU 4xe, '82 SX4, '73 Javelin
Occupation
Retired auto mechanic, frmr gov't ntwrk security admin
Vehicle Showcase
3
She is normally a person to go out and about with friends, gathering at each others' homes, quilt and sewing get-togethers and she spends hours, day after day, making beautiful quilts.
She's not been into her sewing area, not touched a machine, since 2-12-26. She can't drive for months, no sewing for months. Apparently, due to how her arm was broken, where it was broken, this replacement will take a bit more time to heal up than most others. It will be at least April before they even let her do PT. Yeah, part of the stress for me is knowing what SHE is going through.
 

Vincent

Well-Known Member
First Name
Vincent
Joined
Oct 11, 2019
Threads
4
Messages
306
Reaction score
397
Location
46514
Vehicle(s)
2025 Mojave X
Prayers sent for you and your wife!
 

Hootbro

Well-Known Member
First Name
Don
Joined
Apr 13, 2019
Threads
57
Messages
10,212
Reaction score
20,018
Location
Delaware
Vehicle(s)
2025 Gladiator Sport
Sorry to hear of the situation Bill. I second the suggestion of looking into a caregiver if you can swing it. I know you carry a lot of pride in doing your own thing, but it may need to be looked into before things get too far out of hand and someone gets the state involved in your business.
 

lppd45

Well-Known Member
Joined
Aug 31, 2020
Threads
3
Messages
159
Reaction score
290
Location
central pa
Vehicle(s)
2020 Gladiator Rubicon M/T, 1966 Deville convertible, 2013 Jetta TDI M/T, 2003 Road King, and 2016 CVO Street Glide
Occupation
Retired
Sorry to hear about your issues. I hope both you and your wife come through this rough patch. Thoughts and prayers for you both.
 

Sponsored

Rusty PW

Well-Known Member
First Name
Russ
Joined
Jan 10, 2022
Threads
37
Messages
11,458
Reaction score
30,530
Location
Fayette Nam, Pennsyltucky
Website
www.youtube.com
Vehicle(s)
'22 JTRD, '11 370Z Nismo, '07 Honda VFR
Build Thread
Link
Occupation
Muff Diver
Bill........sorry to hear about all of this. My heart and prayers go out to you and your wife. You been through enough shit.
 

smlobx

Well-Known Member
First Name
Eddie
Joined
Jun 28, 2018
Threads
87
Messages
2,658
Reaction score
4,543
Location
Mid Atlantic
Vehicle(s)
JTR, F-350 diesel, Porsche Spyder, Model Y
Occupation
Semi retired consultant
Bill I was wondering why I haven’t seen you posting on the other parts of this forum.
My thoughts and prayers are with you and your wife for a speedy recovery.
 
OP
OP
ShadowsPapa

ShadowsPapa

Well-Known Member
First Name
Bill
Joined
Oct 12, 2019
Threads
247
Messages
40,504
Reaction score
54,031
Location
Runnells, Iowa
Vehicle(s)
'25 JTMX, '23 JLU 4xe, '82 SX4, '73 Javelin
Occupation
Retired auto mechanic, frmr gov't ntwrk security admin
Vehicle Showcase
3
Thanks to all......... we went to a church service tonight at an old old old church in the area where Barbara grew up - it was supposed to be the service and then a potluck supper and then planning for the summer fundraiser to keep the building up and restored (it's on some list of historical buildings and was written about in a California paper years ago)
For the first time ever, we came straight home after the service because as she said - she wouldn't be able to eat without someone feeding or helping her.......... man, can't stand that thought..........

And yes, had to take a bit of a break from the internet insanity, stresses and the craziness out there.
 
OP
OP
ShadowsPapa

ShadowsPapa

Well-Known Member
First Name
Bill
Joined
Oct 12, 2019
Threads
247
Messages
40,504
Reaction score
54,031
Location
Runnells, Iowa
Vehicle(s)
'25 JTMX, '23 JLU 4xe, '82 SX4, '73 Javelin
Occupation
Retired auto mechanic, frmr gov't ntwrk security admin
Vehicle Showcase
3
PSA - if thinking of DBS/electrodes for treatment of ET or PD, keep this in mind (something no doctor or surgeon will tell you)
The neurologist I see had never heard of such things and at first didn't believe me until I showed these to him - and pointed out the words "common issue".
I find myself less able to tolerate stupidity and some of the crap I see on the web. Example - a person claimed that a CTO stamp would be worthless, they were only for childhood stamp collectors and no one wanted them. It was very easy to find he was dead-wrong, and sometimes a CTO has the same value as mint, and is often in line with the value of postally used.
I've found similar things even around here - and misinformation or bad info, or making things up because you don't know but don't want to say so (like AI does) - drives me more nuts than ever now.
So, be prepared for changes if you go with DBS for ET or PD. It's not a panacea.
Toss in a wife who really needs you almost 24/7 for all of life's common things and you REALLY have to watch how you react!
The DBS has caused me to have to be extremely careful.
Better she had her shoulder replaced BEFORE I got the DBS implants than after.

Jeep Gladiator When it rains, it pours, and not about Iowa weather........ PXL_20260321_220256027
Jeep Gladiator When it rains, it pours, and not about Iowa weather........ PXL_20260321_220234976
Jeep Gladiator When it rains, it pours, and not about Iowa weather........ PXL_20260321_220242485
Jeep Gladiator When it rains, it pours, and not about Iowa weather........ PXL_20260321_220245355
 

Rusty PW

Well-Known Member
First Name
Russ
Joined
Jan 10, 2022
Threads
37
Messages
11,458
Reaction score
30,530
Location
Fayette Nam, Pennsyltucky
Website
www.youtube.com
Vehicle(s)
'22 JTRD, '11 370Z Nismo, '07 Honda VFR
Build Thread
Link
Occupation
Muff Diver
As you know. The wifey has the DBS probes on both sides of her head for the Parkinson's. She has none of the side effects. You on the other hand, seem to have them all. :facepalm:
Sponsored

 
 







Top