Primary Orthostatic Tremor

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!

Music that “Fred” played, can be downloaded from this link to enjoy! The first one, includes 12 of his own compositions.

https://www.alchester.com.au/download/Pope_Bill_INSPIRATIONS_all_the_CATS_and_final_one_MISTY_MEMORIES.mp3

The second one, of 25 songs, are covers played on Fred’s favourite Yamaha PSRS-900:  

https://www.alchester.com.au/download/Pope_Bill_COLLECTION_entertains_you_2010_with_25_cover_songs.mp3

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)

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