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
- Thread starter
- #1
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.
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.
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