Taking the mystery out of what a Leg Tremor might be caused by,

Primary Orthostatic Tremor

You are required to join this closed Group,  but we have extracted a copy of “Fred’s” journey from that article, below.



The important message here, is the TREMOR FREQUENCY. POT tremors are typically 13-18Hz (13-18 tremors per second), significantly different and much faster than Parkinson’s Tremors, which are only 2-3Hz (about 2 or 3 per second). And: POT only has this one symptom, the tremors. Our research and comments of 500+ others, has demonstrated there are no additional symptoms.
IE: Anything else one may be suffering from, other than the Tremors, is indeed something totally unrelated, and unfortunately additional to the list of things to take care of.

Our thanks to Dr John Ly of Infinite Neurology, for identification of POT.
http://www.infiniteneurology.com.au/ (Wantirna, Victoria, Australia)

And so, to the story of ‘Fred”….. with some of his music to enjoy!

A History of William Allan POPE  3/1/1923 – 4/6/2019  (POT since Oct 2015).

https://www.facebook.com/groups/orthostatic.tremor/permalink/2216549008359422/


Gary Pope
10 August 2018
INTRODUCING ‘FRED’ (Bill) as new POT (for OT) member.

Hi, my family call me ‘Fred’, but my real name is Bill. I’m nearly 96, and started the OT journey in Oct 2015.

My Son, has joined me to this forum due to the frustration of not finding others with OT, and the trouble I’ve had explaining the symptoms to others when having other related/non-related medical events happen in my life.

The last time I drove a car was the day my legs went wobbly, and I found myself unsteady when at a shopping centre near home. That day began a series of explorations into what was the problem. With specialists introduced by my local Doctor (GP),
– we explored Ears, nose throat thinking there might have been a head dizziness situation, ruled that out.
– then it was exploration into vertigo, another potential reason for losing balance, or in my case, more a ‘fear of losing balance’.
– during the 12 – 18 months that followed, I became dependent on walking on a stick.
– this progressed to a dependency on using a wheelie walker to get around the house

I feared I was suffering Parkinsons, because coincidentally at the time, my voice began to weaken and crakle, and the two symptoms of wobbly legs and the voice, mixed with my close relationship of many mates who had fallen to Parkinsons, prompted me to do too much Googling into what might be. My Son is writing this and probably coloring the thoughts here a little, because fair to say, I became more anxious and had convinced my self that was the path I was heading: Parkinsons.

– But then we got a chance to visit a neurologist specialist, and his technician and did a heap of tests. We finally had a definition of the problem. I had O.T. And the same symptom of wobbly legs, was OT and not Parkinsons because of the rate of the tremor.
– I still felt I was being conned. It took another three visits of pretty heavy argument and convincing, to get me to comprehend the difference between Parkinsons and OT.

Move forward to 6 months ago, East 2018, and my mobility had worsened, and I’ve become dependent on a terrific electric chair: PRIDE GoChair. It has given me new found freedom to get from bed to bathroom, to kitchen or TV or to my pianos or computer, to see what’s going on.

Then in recent weeks, I caught pneumonia, and attended private hospital followed by a three week stay in Rahabilitation. My energy levels dropped, and I felt new symptoms of OT were getting to me.

So we visited the original Neurologist to once and for all seek clarification of what other symptoms come from OT. And he stated that the tremor in the legs is a solitary symptom and cause of OT as we all define it, and there are no other related symptoms. Therefore, the new found weakness must be something else.

But I’ve spent the last couple of years, believing there might be other factors that will impede me. And due to privacy laws and so forth, I’ve been deprived of discovering if there are other people around the world with OT and what their path has been.

So with OT comes anxiety, and with anxiety comes new medical matters to deal with, so there is a snowball effect here, particularly if there is a level of anxiety in life to begin with. SO it becomes a challenge to separate the cause/effect of things and for the GP to provide the right drugs to ensure
– a good nights sleep
– to enable a next day ability to get up and do any sort of physio (at 95!)
– and therefore maintain a healthy diet and appetite.

AS for drugs for OT, there were three available in Australia. The first one, Clonazepam, knocked my socks off in a couple of days and was immediately stopped. Then the 2nd was to try Gabapentin for 3 months minimum. I started on 100mg 3x a day, and slowly shifted up to 3x 200mg then 3x 300mg and right up to 400mg 3x a day, over the course of about 3-4 months, and continued on 400mg 3x a day for a further couple of months. I tried it for 5 months with no impact. Others might say that continued use of it might have extended the combatting of the OT – who knows. There was a third experimental drug, but with none of the priors working, that was skipped.

Dad progressed from Oct 2015 needing a stick, to a wheelie walker about a year later, and in the last 6 months to a Pride GoCHAIR (battery powered rear wheel drive, small, front casters)which has been brilliant for mobility in the house.

7 weeks ago he had pneumonia and in to hospital 2 weeks and rehab for 3 weeks, and has been home for 2 weeks.

But his energy levels are now well down, and spending 90% of time in bed. This is the current concern.

He has prostate cancer, but under control for many years, had a stent in heart 12 years ago, but that is fine, and otherwise suffers having a 50 year old mind in a 95 year old body. Much frustration and anxiety results.

Doing a search for “Melbourne” on “Gloria’s overseas forum on OT, and with respect, skipping those in Melbourne Florida, and focusing on those in Melbourne Australia, I’d love the chance to compare notes on OT in case there are doctors, services or people who can help, that are close to my home.

Our reason for reaching out to others, is to help Dad understand he is not alone, gain greater insight to OT that is otherwise unheard of by many, and understand better his condition and to separate symptoms of OT, from side effects of drugs and other anxiety matter and the drugs in use for them (ie: Lexapro for his anxiety)

My finding 34 other Aussies with OT on “Gloria’s” overseas forum, which in turn lead me to this POT (OT) forum for Australia/NZ, and getting shared feedback from people like yourself is terrific – thankyou.

Thankyou for sharing my journey in OT.

Cheers

“Fred”

Footnote:   Sadly, Bill passed away peacefully, due to asbestosis, smoking, prostrate cancer and poor breathing ability associated.
But it is fair to say, his decline was extenuated due to his immobility leading to being bedridden in final 7 months, all starting by POT.

THANKS to the 500+  worldwide POT members of that we managed to locate, and in particular the 36+ Australian based POT sufferers who we managed to make acquaintance with in 2017-18 giving “Fred’ the peace of mind he needed in knowing WHAT HE WAS DEALING with.

This website is here to encourage people to be aware of the technically different tremor frequencies that so define POT versus other illnesses.  We encourage that readers with symptoms, seek the services of a qualified Neuro Technician to measure and identify the relevance or not, of the symptom, so they too have a chance to seek the right medical/care path ahead.   Simply share and talk about this,  is all we seek.

Gary Pope
mob: 0408994799 (Australia)

NBN is here, but things are very different to the past.
Outlined below with no bias to any reseller services, are the considerations needed.
(Terminology is defined far below)

No Power

NBN runs on fibre to the Exchange and various cable/fibre combinations to the premises,   but now lacks the fallback 50v power that once ensured voice communications.   VOIP replaces the old landline with a handset running over PSTN (2-pair)  50v current copper wiring.

With the NBN / VOIP architecture,  there is no point going to the expense of a Uninterruptible Power Supply (UPS) at the premises,  to try and keep any 240v appliances running, as the Exchange may not be powered at the other end anyway.   The details are outlined here, and are very important to understand, in the event of any Emergency, like power outages,  bushfires or national emergency.  Fallback considerations are needed.

ie:   https://www.nbnco.com.au/learn-about-the-nbn/what-happens-in-a-power-blackout.html

History note: Back around 1912,  the designers catered for the possibility that a catastrophic event might knock out all the power,  (SEC 240v supply in Victoria for instance, in those days), whilst the humble telephone using the original  PMG network of the day, could still place an emergency call.  That was smart thinking in 1912, as war broke out 2 years later and people started to think about matters of urgency like these.

Medical Alert systems

Some providers of Medical Alert Systems,  require the ability to place a phone call to personal contacts on ‘000’ emergency services.  Therefore the Alert ‘system’ must be compatible to the Modem/Router  that is at the premises, connected to the NTU termination of NBN.   Some other combinations of say, 3G/4G fallback in times of power failure are worth considering. Check if the ‘Alert system, you are contemplating,  has a way of coping with power outages on NBN/VOIP networks.

Speed

Much controversy exists about speed,  with the roll-out of the NBN.

The original 2010 implementation was based on fibre optic connections all the way to the Premises (FTTP), and early adopters have this, and enjoy the originally touted speed promises.

The revised design around 2013 saw the change to fibre optic only between Telephone Exchanges (FTTN),  and the utilisation of older, existing COAX CABLE to the premises  (HFC).    This combination of fibre over to COAX (known as HFC) wiring, means that the speed of transferring DATA, (including VOIP data for voice calls over the internet),  is reduced.

Suspension 27th Nov 2017 for 6-9 mths (tentatively)

A significant number of consumers experienced a speed of service that was less than their expectations.   With the huge number of resellers providing NBN solutions,  the alleged speed offering,  when implemented over HFC (the Hybrid of Fibre and Coax)  was a vastly reduced outcome compared to the early adopters of FTTP (pure fibre all the way to the premises).  The ACCC brought to a head,  the need to compensate such consumers,  and brought about a suspension in the roll-out of the NBN until the service levels, speeds and an overall clarity of what was being offered to consumers was improved.

Indications suggest that the suspension could be in the order of 6-9 months.
ie:   http://www.theaustralian.com.au/national-affairs/cable-fail-as-rollout-of-nbn-put-on-ice/news-story/d7891112342e9f646bc54fcaddfd1f61

For new high-rise (apartment) developments,  such special projects seem to gain an exemption to this suspension, and NBN is provided even into areas where other existing single premise consumers live but are not yet entitled to NBN.   But this leaves a problem for those who have moved house,  or built a new house on freshly developed estate land,  when applying for services where NBN roll-out had already began (prior to the suspension).  These consumers are in limbo, unable to get NBN due to suspension, yet not allowwed to order the old ADSL or COAX based services because NBN has started in the area.  They are left to use poor speed, expensive alternatives of 3G/4G wireless broadband or some other proprietary services not bound by the rules of NBN Co.

Medical Emergency Register

Call 1800 227 300 to be registered on the NBN Medical Alarm Register, entitling you to use alternative ADSL2+ even if it needs new PSTN copper wire cabling during the NBN suspension.   Residents requiring emergency call services,  need to have access to either  PSTN lines (the old 2-pair copper wires that have existed since 1912),  or they need to consider 3G/4G mobile connection equipment as an alternative.  Normally,  since NBN has been introduced,  additional deployment of PSTN copper wiring is NOT available.  But residents in this ‘medical’ situation are an exception.

A sideline option for residents on the Register, is that they can apply for old style ADSL2+ services running digital internet services over the PSTN copper wiring for a period of 18 months beyond the otherwise cutoff date of PSTN usage.   So this is a window of opportunity still for such consumers.  It is also a worthwhile consideration if their Medical Alert system of choice needs to work out how to deal with NBN/VOIP utilisation where there is potential lack of service when power outages occur.

Security Alarms

Some security systems have a callback-to-base service so that a monitoring company can be alerted of a security matter at your premises.  This requires the security alarm system to be able to place a call.   So there must be compatibility of the alarm system to MODEM/ROUTER,  and the concerns mentioned when there is a power outage, also needs to be taken into account.  For instance,  during a Security event,  there is the probability that power can be cut,  and therefore, any security calls over the NBN would fail as the Modem/Ruuter is off the air.   In this situation where the power cut is local to the premises,  then a local UPS keeping both the alarm system AND the NBN Modem/Router equipment AND the call-making devices alive on standby battery, could be a solution to the service being successful.

PHONE AIDS for hearing/sight impaired.

There are a variety of phones that have features for residents who have a hearing impairment or sight impairment.   If they are reliant upon 240v, then consider the alternatives that may be needed in the event of a power outage.   Also, consider their compatibility for use on the VOIP equipment provided  by the selected  NBN service.

Fallback considerations.

Disaster Planning calls for alternative means of communication, in the event of power outages,  equipment failure, or infrastructure damage.   Such planning is no different to travelling the vast areas of outback Australia as a grey nomad., in terms of just phone call access.  Mobile phone coverage is limited,  and if mobile towers have power outages, such systems are dead in the suburbs as well.    Many examples of mobile outages (failure or power) like this exist:
ie:  http://www.standard.net.au/story/4932737/telstra-blackout-leaves-town-in-phone-cash-chaos/?cs=2452

Hence the reason why travellers look to independent alternatives like Satellite phones for instance,  which have no dependency on land-based technology.  But before going to that extent,  some common sense options exist,  such as having a spare mobile phone that runs through totally different base stations towers than the provider of the NBN services you use.   This is why emergency service crews still use the humble PAGER, as it relies on only a few distance base stations with power backup (generators).

Use this website to identify all the different tower locations near your residence, and who uses them.   Then consider selectging alternative vendors on different towers for your fallback.

See: https://www.rfnsa.com.au/3154001

If all these system are failing,  you shouldn’t have still been in the premises – but that’s a whole new topic:  Disaster Planning.

Equipment that requires 240v to operate

The simple cordless phone in the home,  comprises a MASTER phone plugged into 240v  PLUS the source of the voice line, that was once a landline, or now a VOIP connection to the Modem/Router, which also needs 240v to operate.   Then there are other SLAVE cordless phones around the home which run over say  2.4Ghz  wireless frequency and run on batteries that get recharged in their docking stations.  But if there is a 240v power outage, the MASTER will not work, and therefore the SLAVE units won’t work either, because they require the MASTER to relay the 2,4Ghz wireless transmission.

You may have a laptop that has battery power, and you  might even have a UPS to extend the time of that battery during a power outage,  but the internet connection over NBN will still not operate, as explained above.   So Skype over internet or any such ‘communication’ equivalents are of no joy during a power outage.

Recommended solutions now or when on NBN 

If you still have ADSL2+  for your internet before NBN requires you to migrate to NBN, and you have a Landline phone service running on the PSTN 2-pair wiring, then keep an old NON-POWERED phone handset on the main entry point connection to still place emergency calls enjoying the 50v DC current on PSTN.

But if you have an NBN connection with VOIP, then you will need to rely on an alternative Mobile Phone service in an emergency when there is a power outage.  To minimise the risk of the power outage that is affecting the Exchange area where your NBN is connected,  consider the adoption of a mobile phone that uses an alternative Base Station Tower that resides on a different power grid location (next township for instance).   If a town’s power is cut, then there is the likelihood of the Echange and the Towers also being affected.  Not all Exchanges or Towers have their own independent fallback UPS, Battery of diesel generator sets.   If your town does, then great.

Terminology

                    

A typical 2-pair copper wire PILLAR (with hardened screw top cover removed)
found everywhere around Australia,  typically on street corners,  (Don’t hit one with a car!)
with those 50v powered wires linking to properties nearby for landlines and ADSL/ADSL2/ADSL2+.

And to the right,  a typical power pole with high voltage power at very top, street lights under.  The power company has 
leased  (about 1m below the power)  provision for Optus to run their COAX Cable for their internet/Optus TV roll-outs
Notice the white concrete PIT to the right of the pole, on the verge, owned by Telstra for all PSTN and their COAX.
In this picture, Telstra has become a sub-leasee of the pole from Optus,  permitting them to run a white conduit
up the pole to provide the COAX cable service via OVERHEAD,  in this case, due to rock obstacles at the property.
Meantime, PSTN 2-pair copper wires are running from that PIT, underground to the premises, made when accessible years ago.

PSTN
The  50v DC powered 2-pair copper wires that run through Telstra pits and pillars in the streets, and carry ANALOGUE voice and Fax signals.    Refer 6th July 1912 first adoption:
ie:  https://sites.google.com/a/politicalscience.com.au/home/Home/chronologies/australian-chronology
and the 50v Power usage:
ie:  https://oldaustraliantelephones.weebly.com/testing-your-telephone-service.html

ADSL
The digital signals that concurrently run over PSTN 2-pair copper wiring for providing internet services

COAX
The coaxial cables used by Optus (1m under the overhead power cables on power poles) or
the similar coaxial cables that run through Telstra nature-strip pits for providing PAY TV and/or internet services

HFC

Hybrid Fibre Coaxial is where they may be using Fibre to the local exchange, but then the NBN Co relies upon the retention of existing Coaxial cable that runs from the nearby Telephone Exchange,  to your street (in the Telecom Pit in your nature strip for instance)  and then from that pit into your house where you get an NBN provided Network Termination Device (could be something like this:  https://www.arris.com/products/touchstone-cm8200-cable-modem/   )  which converts the signal to an ethernet signal/port for going to your choice of a ROUTER.

CORDLESS
Voice phone devices that you carry around which operate on say 2/4Ghz frequencies,  for use within the home, and connected to Landline or VOIP

MOBILE
Smartphone like devices that have a SM card and connect over the 3G or 4G  mobile phone network via base station towers within a 12km radius

NTU
An appliance (non powered) that terminates the Fibre or COAX connection inside your premises, of the NBN service cables

MODEM
The appliance that supplies you an internet connection within your premises

ROUTER
Sometimes part of an all-in-one  Modem/Router/Wifi/VOIP appliance,  it  is the technology that permits multiple users to connect
their appliances (PC, Phone, Printer,) simultaneously to the Internet service connection (MODEM end)

VOIP
The technology that converts voice to data, and transmits that data over the internet for a recipient to hear on their VOIP device (Phone)

Wireless
For connecting the premises to an external internet service using 3G / 4G connections to nearest Mobile Base Station Tower.

WiFi
For transmitting a signal without wires, within the premises over a short distance of realistically say, up to  150ft inside.

Base Station
The Towers that have the 3G / 4G antennas that propagate the signals of your Mobile Phone or mobile Broadband devices

Landline
The 2-pair copper wire (PSTN) based wiring that provides analogue voice communications services using your phone NUMBER

NBN
The name given to the infrastructure:  National Broadband Network

NBNCO
The company responsible for rolling out the NBN infrastructure

RSP
Retail Service Providers (of the NBN technology)
refer:       https://www.nbnco.com.au/connect-home/service-providers.html

Case Study
showing a traditional ADSL (left)
versus NBN (right) installation
with wired, wifi and ethernet equipment and phone AID  (bottom).
Medical monitoring device and personal pendant (centre).

Gary Pope
m: 0408994799
e:  gaz@alchester.com.au
A Reckon Accredited Partner- Consultant (VIC. Aust)
http://www.alchester.com.au/reckon-ac…
“Working with Accountants/Bookkeepers PPs/APs, as an
     independent IT Professional and retired FCPA Accountant”

When recently confronted with a potential need to run a LAPTOP at a conference for 8-10 hours,  then an exercise was undertaken to explore external batteries on the market allegedly providing considerable extra power…..  but not so.  Read the fine print on the calculations!   Some of these ‘boost’ batteries are in fact capable of jump starting a diesel 4WD – and that’s really the short-burst power capability of these small devices.  They are NOT for extended consumption by a powerful laptop.  But the exercise certainly gave rise to a better understanding of what power usage is all about..

 

FYI: It’s the old story. If you want 1TB running RAID, plus another 1TB of storage, 8 processors and max memory running a 1080, with 5 operating systems running in virtualisation mode – you have to give up battery life as a compromise – welcome to my life. see: http://www.alchester.com.au/powerful-laptop-with-virtualisation/

 
Battery Myths

Whilst the label says:  16,800mAh  – but what can it do?   What voltage is it rated at?
Just what can you you do with this alleged 16800mAh of capacity?

Proposition:
the number more likely represents  3.7v  *  16800mA  being  62.16Wh  (but only as a PEAK!)

Stated Purpose
Let’s consider these small external JUMP-START batteries offering 250-300CCA (500-600 peak CCA) for starting a car’s flat battery.
Their design is based on short (3 second peak, and no more that 30 seconds)  connection for a short COLD START of a medium sized engine.

They do NOT offer holding power for sustained output.

Don’t fall for the 16800mAh versus  your internal battery of  4025mAh and dream that it will run for 4 times the normal use of your laptop.

The discharging process bears no relationship to such poor mathematical expectations

10 observations

1.   It is a Lithium Battery – but is it ION or Polymer
Of concern, was that the INPUT CHARGER was a light-weight humble  240v – 12v adapter only providing 1A output!
That’s an mere 12W charger trying fill up an alleged 16800mAh device!!   That will take 17 hours assuming no loss of current!

2.   Batteries cannot transfer power to another battery at a consistent energy RATE.
If they contain a 3.7 Polymer battery,
and if they have transformers that permit 5v   12v   16v   19v  output,  it is likely to be a a different Amperage output rate.
ie:  the test unit states:   OUTPUT of:   19v at 3.5A

3.   But manufacturers of course,  never state for HOW LONG that output can be sustained.   The reality is,  it is NEVER sustained.
The UNWRITTEN REALITY is that it is a maximum capability statement,  for initial output only

4.   External Battery Output  is 19v at 3.5A  suggests output of  (w = v * a)   of    66.5W (watts)     – a statement of maximum output capability….

5.   The laptop appliance will PULL (draw) the power that it requires (as a demand system),  based on the laptop VOLTAGE and Amperage needed

6.   EXAMPLE:   Gary’s Venom 13″ laptop with Debian Jessie – i7 CPU, 16GB ram 2x mSATA 512GB running raid-1 PLUS another 1TB SSD drive
1080 Hi-Res screen, backlit keyboard,  Intel GPU (and an Nvidia GPU, disabled)
has an INTERNAL  19.v   5600mAh battery.    This is 2 years old, and degraded to 72%  at 4054mAh  according to #upower -d     and
root@absvenom:/home/gaz# acpi -bV
battery 0: design capacity 5600 mAh, last full capacity 4054 mAh = 72%
So, that power consumed for a realistic 83% usage of that degraded available energy is say:
83% of 4050mA   in 70 mins  =      2881mA per hour  but only for  70 mins  until DEAD.

7.  So, the LAPTOP is drawing power for USAGE, during that one hour of operation is  2.881A at 19.5v  =    56.18W  constant demand

8.  When connecting the external battery to the LAPTOP (fully charged to start with),  what transpires is:
a)   The Laptop declares it is being CHARGED from AC (but really from the external battery source)
b)   The internal battery level indicator declares it is 100% full until the external battery becomes depleted and stops
c)   The external battery lasted ONLY  35 minutes
d)   Then the internal battery starts to discharge,   and in the test case,   reduced to 62% (down 38%)  in a mere 20 minutes!
           (of interest to notes, was a 12% loss in a 70 second interval!)…. 
Previous tests have show a  1.18% loss of power every minute,   which is the typical expected.
e)   It was decided to abandon the testing,m and recharge the internal battery from 240v / 19.5v 6.15A (120W) external ADAPTER.
This took from 15:21PM (at 62%)  to    16:50PM (100%)     ie:  a little more than an  90 minutes to top up 38%….   (using a 120W supply!)

9.  Meantime the external unit is now awaiting a long  night to recover from its 35 minutes of enjoyment!

10.  Do they work?   For a quick boost for 35 minutes – yes,   but for sustained usage:   **NO**

 

The good news

The conference where power for laptops was needed, saw it prudent to supply 4-way power boards under each table throughout the venue.  Nothing like 240v to run a laptop all day!

 

If you want a jump start for your car,  here’s an example of what was tested

http://www.ebay.com.au/itm/16800mAh-Car-Jump-Starter-Emergency-Charger-Booster-Power-Bank-Battery-SOS-Light/262184551886?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D1%26asc%3D20140106155344%26meid%3D20a49226c27f472d80bc629cd86b9f53%26pid%3D100005%26rk%3D2%26rkt%3D6%26sd%3D252080316373

 

Alchester is here to help, with the freedom of choice of devices and servers

Taking a pro-active role in helping business owners flush out the “Elephant in the Room”  issues with their profit margins, COGS and overhead concerns,  Alchester offers an independent consulting service to couple other technologies, help refine procedures and business practices and pin point issues needing improvement,  to generate a healthier bottom line for the business.

 

As a service back into the Reckon Accredited Partner Community,  here is a simple overview that helps demonstrate the freedom of choices available to users who seek Accounting software for a variety of reasons.   So, first, why the different platforms?  Let’s explain what is going on behind the scenes for you.

Cloud or In house ?   –  Freedom to choose, depending on your specific needs

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