unwell

Jessica at Cafe Church at Hope Uniting Church.

Somewhere in the muddle of posts and Facebook I have been expressing my concern that my Epilepsy has worsened to the point where it is difficult to remain upright.

Our Nelune Comprehensive Cancer Centre (NCCC)

After a day in the E.D. at Prince of Wales Hospital Randwick a S.M.O. did a full blood count and then suggested a Lamotrigine level be done. It was toxic at 18 and my Calcium was also too high.

Toxicity produces most of the symptoms I have experienced and the Calcium may also induce seizures. My Dr. a formidable younger woman swore her way through the favours she had to call in and we are hoping for a place in the Epilepsy Clinic at the POW.

Meanwhile, Jessica has had the first of many nerve conduction tests on her bladder and has had to cut out practically everything except water. Even those things she can eat have been barred by other clinics.

My Clonazepam has been increased to 1 mg per morning and night and the Calcium ditched. I have yet to see how this stirs the pudding.

I feel more like 70 than 65.

Independent Living Expo.

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On the 8th Jessica and me went along to Olympic Park for the biennial Independent Living Exposition. Being held there and a journey fraught with stress for Jessica we hired our regular Accessible Cabbie and had a fairly nice journey both there and back.

Featuring

https://www.atsaindependentlivingexpo.com.au/wp-content/uploads/2019/04/ATSA-SYD-16pp-program-LR-100419.pdf

There are many different types of wheelchairs depending upon the level of disability or desired use for the chair. There was everything from walkers and toddlers wheelchairs, through to 4 wheel independent suspension+4 motors for Farmers. We had stair climbers and standing chairs for golf, one shaped like a peddle car foe a child. Tricycles, Racing Bikes. Off road vehicles. Finally, very expensive vehicles adapted for wheelchair drivers.

In the first photograph Jessica is trying the controls of a vehicle, earlier she had dropped her age by 15 years and crossed gender again to trial the 4 wheel drive independent suspension demonstration track. Then when she let on that she was female they also had to allow women to trial the trail.

The display I found the most humorous was that of the skeleton demonstrating passive exercise, there are two photos of it in the gallery, one for arm and the other for legs. And a few stuffed bears and a doll found their way into the action.

A public consultation workshop to help shape disability policy for 2020 and beyond

This past Monday I went with a friend to attend the Consultation regarding the formation of a National Disibility Strategy for beyond 2020.

This forum was focused more on the NDIS, National Disibility Insurance Scheme, than general disibility policies therefore the focus was on those under the age of 65. The conference focused on ways to improve this scheme however those in the over 65 bracket heard nothing about My Aged Care.

Since the inception of the NDIS those people with disabilities over the age of 65 have now been aligned with AGE/HEALTH without disibility being a major factor in the Clare Plackages, if indeed they manage to receive one. Many of those on the cusp of being classified as old lost the small packages they had and where unable to replace these with NDIS packages because upon reaching 65 they would be too old for the NDIS anyway.

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Here is the advanced information for this event

A public consultation workshop to help shape disability policy for 2020 and beyond.

About this Event

The National Disability Strategy 2010-2020 is Australia’s framework for creating a more inclusive society that enables people with disability to fulfil their potential as equal citizens.

At the end of 2020 the National Disability Strategy will end and governments across Australia are working together to develop a new strategy for beyond 2020. We need to make sure a new strategy reflects the changing policy environment and builds on opportunities available today as well as what may emerge over the next decade.

From April, the Australian community is invited to take part in national consultation to shape the future of disability policy for 2020 and beyond.

There will be face-to-face and online workshops held in each state and territory. At the workshops you can share your experiences and help shape the next strategy as it is vital people with disability have a leading role in modernising the policies and programs that affect them.

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Rydges Parramatta

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Empty Conference Room

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Session two – when we had the opportunity to add our thoughts to the boards.

Department of Social Security Consultation to develop a National Disibility Strategy for beyond 2020

My Fourth Honest Post

( My husband has Bipolar Affective disorder,  brought on by his epilepsy. During episodes of Mania he experiences hallucination.  When depressed he hears people talking about him when they are not or may not be there. He has been Experiencing the depression since aged 17. He can be Paranoid, even against me- his wife…) This is the reason I reblogged this Post

My Fourth Honest Post

I have had a lot of time to reflect today. After last nights panic attack that almost landed me in the hospital, I spend most of the day in bed, mostly thinking about the causes of my anxiety.

It’s funny. I have been working toward so many goals this year. I started this blog because it was a requirement for a class I was taking. It was creating my writer’s platform. A place to share the parts of myself that were both as a writer and as someone with a mental illness. It has been an amazing journey for me. The people that have touched my life through their own sharing of their own stories.

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I have tried to create a blog much like what The Bipolar Writer in the past, it has become over these past few months something I have never imagined. I had no expectations that this place would become a place to really talk about mental illness, not just my own story.

I never thought I would be an advocate. I mean three years ago I thoug..[ ]

 

via My Fourth Honest Post

Strange goings on 7 October 2017

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I have had epilepsy, you could say, all my life and have run  out of anticonvulsants which manage the condition sufficiently.

For the past several month I have been experiencing, to various degrees, episodes when I cannot retain my balance or actually do fall over; accompanied by double vision wherein the second of the object appears to be quite distant from the first. These experiences began when I tried a new drug for me, last year, we discontinued the drug.

Now, using Perampanel I am having the same experiences though more extreme, the events usually occur either early mornings or late at night, though I had one mid-morning on Thursday.

Two days beforehand I was getting myself ready for a dental appointment ( Sydney Dental Hospital) after which I planned to visit Jessica at St. Vincent’s hospital where she has had her heart surgery – all good. I had gone into the bathroom to capture Jessica’s old walking stick hoping to remain upright on two sticks long enough for the episode to wear off and for me to do the usual ‘be in 2 places at once’ thing that is very much part of my life. By this time I was already having the seizure because of the fixated manner of thought processing, in the bathroom I tripped and fell hitting my forehead, back of head and hip on the porcelain toilet pedestal. Still have some very interesting op art on my face and rear.

I estimate that I was out for about 20 -30 minutes since I came to at the sound of the door being knocked which would have been Jessica’s Tuesday carer – the message to stop all services didn’t make its way to the end of the line. I still could not stand and crawled to the front door, praying she wouldn’t leave before I got to it. Hauling myself up by the lock I opened the door and then almost fell back over but was caught, the ambulance was called and a trip to Prince Of Wales Hospital  Randwick saw me for about 8 ish hours, where no one knew which way was up either.

I surmise that there may be a drug interaction we have missed this else it is something new to me in my older age. When prescribed Epilim with Lamictal quite some years ago the combination brought me to my knees – let’s say, but nothing is recorded connecting Perampanel with any adverse chemical reaction – that I have found.

Now I have to do some Dr Google since it is getting too dangerous to be home alone or out in public alone, and it may be something literally in my head that needs seeing with an MRI- if this is the case it makes for a simple explanation by ???

Andrew

 

 

Andrews having weird seizures

Epilepsy In-Depth Report

Background

Epilepsy is a brain disorder involving repeated, spontaneous seizures of any type. Epilepsy is not a single disorder but rather a wide spectrum of problems. What all types of epilepsy share are recurrent, unprovoked seizures caused by an uncontrolled electrical discharge from nerve cells in the cerebral cortex. This part of the brain controls higher mental functions, general movement, and the functions of the internal organs in the abdominal cavity, perception, and behavioral reactions.

The structures of the brain include the brainstem, consisting of the spinal cord, the medulla oblongata, the pons and the midbrain; the cerebellum; the cerebrum (one half, or hemisphere shown); and the diencephalon.

SEIZURES

Seizures are a symptom of epilepsy. Seizures (“fits,” convulsions) are episodes of disturbed brain function that cause changes in attention or behavior. They are caused by abnormally excited electrical signals in the brain.

A single seizure may be related to a temporary medical problem (such as brain or tumor withdrawal from alcohol). If repeated seizures do not happen again once this underlying problem is corrected, the person does not have epilepsy.

A single, first seizure that cannot be explained by a temporary medical problem has about a 25% chance of returning. After a second seizure occurs, there is about a 70% chance of future seizures and the diagnosis of epilepsy.

TYPES OF EPILEPSY

Epilepsy is generally classified into two main categories based on seizure type:

  • Partial (also called focal or localized) seizures. These seizures are more common than generalized seizures and occur in one or more specific locations in the brain. In some cases, partial seizures can spread to wide regions of the brain. They are likely to develop from specific injuries, but in most cases the exact origins are unknown ( idiopathic ).
  • Generalized seizures. These seizures typically occur in both sides of the brain. Many forms of these seizures are genetically based. There is usually normal neurologic function.

PARTIAL SEIZURES (ALSO CALLED FOCAL SEIZURES)

These seizures are subcategorized as “simple” or “complex partial.”

  • Simple Partial Seizures. A person with a simple partial seizure (sometimes known as Jacksonian epilepsy) does not lose consciousness, but may experience confusion, jerking movements, tingling, or odd mental and emotional events. Such events may include deja vu, mild hallucinations, or extreme responses to smell and taste. After the seizure, the patient usually has temporary weakness in certain muscles. These seizures typically last about 90 seconds.
  • Complex Partial Seizures. Slightly over half of seizures in adults are complex partial type. About 80% of these seizures originate in the temporal lobe, the part of the brain located close to the ear. Disturbances there can result in loss of judgment, involuntary or uncontrolled behavior, or even loss of consciousness. Patients may lose consciousness briefly and appear to others as motionless with a vacant stare. Emotions can be exaggerated; some patients even appear to be drunk. After a few seconds, a patient may begin to perform repetitive movements, such as chewing or smacking of lips. Episodes usually last no more than 2 minutes. They may occur infrequently, or as often as every day. A throbbing headache may follow a complex partial seizure.

In some cases, simple or complex partial seizures evolve into what are known as secondarily generalized seizures. The progress may be so rapid that the partial stage is not even noticed.

GENERALIZED SEIZURES

Generalized seizures are caused by nerve cell disturbances that occur in more widespread areas of the brain than do partial seizures. Therefore, they have a more serious effect on the patient. They are further subcategorized as tonic-clonic (or grand mal), absence (petit mal), myoclonic, or atonic seizures.

Tonic-Clonic (Grand Mal) Seizures. The first stage of a grand mal seizure is called the tonic phase, in which the muscles suddenly contract, causing the patient to fall and lie stiffly for about 10 – 30 seconds. Some people experience a premonition or aura before a grand mal seizure. Most, however, lose consciousness without warning. If the throat or larynx is affected, there may be a high-pitched musical sound (stridor) when the patient inhales. Spasms occur for about 30 seconds to 1 minute. Then the seizure enters the second phase, called the clonic phase. The muscles begin to alternate between relaxation and rigidity. After this phase, the patient may lose bowel or urinary control. The seizure usually lasts a total of 2 – 3 minutes, after which the patient remains unconscious for a while and then awakens to confusion and extreme fatigue. A severe throbbing headache similar to migraine may also follow the tonic-clonic phases.

Absence (Petit Mal) Seizures. Absence or petit mal seizures are brief losses of consciousness that occur for 3 – 30 seconds. Physical movement and loss of attention may stop for only a moment. Such seizures may pass unnoticed by others. Young children may simply appear to be staring or walking distractedly. Petit mal may be confused with simple or complex partial seizures, or even with attention deficit disorder. In petit mal, however, a person may experience attacks as often as 50 – 100 times a day.

Myoclonic. Myoclonic seizures are a series of brief jerky contractions of specific muscle groups, such as the face or trunk……

Read more at Epilepsy In-Depth Report – New York Times

Epilepsy – In-Depth Report – NY Times Health. 2017. Epilepsy – In-Depth Report – NY Times Health. [ONLINE] Available at: http://www.nytimes.com/health/guides/disease/epilepsy/print.html. [Accessed 07 October 2017].

What is Chronic Obstructive Pulmonary Disease (COPD)-14 September 2017

Chronic Obstructive Pulmonary Disease (COPD) is the third leading cause of death in the United States. In this video, Dr. James Kiley and Dr. Tony Punturieri from the National Heart, Lung, and Blood Institute (NHLBI) provide an overview of COPD. Topics discussed include risk factors, signs and symptoms, and treatment options. To learn more, visit the COPD Learn More Breathe Better® Program at copd.nhlbi.nih.gov.