In’s and Out’s

(c) 2015 Edward C Lunnon / 8 years 9 months ill … / Physical: Deuce – Mental: Adv ED

Last Wednesday, I started writing a blog in the hospital radiographer’s waiting room (see In the Waiting Room). 

I didn’t finish it because i was called in for an ultrasound of my hip, which has been giving endless bouts of pain. An hour and a half later, and I had been IN and OUT. I would get the results the next day, which proved all clear!

So now, it’s pins, patches and pills for the pain. And so far, two pain-free days!

So, it’s been that kind of week – a time of in’s and out’s!

Me at  the radiographer, and this morning, me OUT at the Valley Market IN Port Elizabeth’s Baakens Valley. Together with thousands of others, I went to experience PE’s first artisanal food market – an authentic market experience where unique and creative kinds of food are available, from exotic paella and gourmet burgers to artisanal chocolate and fresh fruits and vegetables. It wasn’t a quick IN and OUT!

It’s a great start to a new monthly experience, and a portion of the proceeds goes to charity – Love Story, run by none other than the wife of King’s captain, Luke Watson, and friends. Long may it prosper, and may the Baakens Valley soon also prosper with all the development earmarked there.


Sepp Blatter, no introductions needed, was also IN and OUT this week. Danny Jordaan was IN as Mayor of Nelson Mandela Metropolitan Municipality. Watch this space as to when he will be OUT! Nkandla is still IN and many would wish that No 1 was OUT! Panayiotou is IN and not OUT, and $100 million was given OUT by the SA Government but never went IN to the West Indies Development account. A number of FIFA executives are OUT of FIFA and IN prison.

The Prime Minister of the United Kingdom, David Cameron, was IN again, and the leader of the Labour Party, Ed Milliband, and that of the Social Democrats, Nick Clegg, are OUT.

Sr Gill, my carer IN the Hospice, is soon to be OUT – as a result of austerity measures and retrenchments! It will be a sad day when she leaves at the end of June. We went OUT to the Hospice fundraiser which was IN the Feathermarket Hall. It’s always a good evening of music, and in addition I got to make a brief plea for donations which raised an additional R12000! Thank you all for taking the money OUT of your wallets and purses and putting it IN the Hospice baskets.

“Neil Diamond” sang IN the Old Grey Hall so I went OUT to that. Isaac continues to come IN and OUT on Thursdays and Annette, Jane Woodin, Liz Findlay and I went OUT for coffee at the new coffee shop IN the Valley. I’ve forgotten its name – forgetting is not ruled OUT at this stage of one’s life and is definitely IN mine at the moment!

All in all, I’ve been IN a lot lately and not getting OUT as much as in he past. It takes some getting used to!

I’ve been IN considerable pain and not OUT of the woods yet. IN a way, I was hoping they would find something at the hospital so that they could take it OUT.

So I’m IN the storm – let’s ride it OUT! 

PS The best of all: the electricity hasn’t been OUT all week so we’ve not been IN the dark for a while!

CBD Notes (2)

    I thought I would share with you private notes that are circulated between some of us who are CBD sufferers and our caregivers / spouses / families.

    It will hopefully give you a better insight into the world of those of us who battle CBD everyday!

    I have removed names for obvious reasons!

Does anyone else deal with sundowners and no verbal communication to know what the patient needs or wants.

I’ve just been thru a deal where he got out of bed on his own and would not tell me what was needed.
He then gets belligerent.
I spend my life worriing about him falling again.
2 times last week I had to get him up off the floor as he is determined to do whatever it is he wants to do.
It’s horrible to think he will break a hip or take me down with him.
Any thoughts?


M doesn’t sundown exactly, but he does get very easily agitated if he is tired or it is late – I’m not sure if the light has anything to do with it or if it’s just fatigue. We try to prevent it by having him in bed by 8:30 most nights.
When the agitation does occur, we usually have to stop whatever we are doing and just sit with him until he calms down enough to let us know what he needs. He usually knows what that is, but not always. He can’t speak so we understand him. But he can point to letters on an alphabet board. If I ever get time, I’d like to make him a picture board for the most common requests so he doesn’t have to “type” so much.
When the time it takes to calm him doesn’t work (for example, a fall is imminent), sometimes we just have to manhandle him into a safe position and deal with the fallout later. He hates it, and it makes the agitation worse. We apologize afterward with the explanation that it was necessary for his safety. He eventually get over it.
We’ve been blessed so far that his cognition is intact except for the PBA and slower processing speed.


I really have had a tough time tonite. He actually goes to bed at 6:30 or 7 but that is his choice.
he is tired by that time and wants to watch tv in bed but he definitely is not mentally there enough to find his way. knocks pictures off the wall and regularly runs into doorways and needs me to physically guide him. sometimes he resists being guided. It is the resisting that is so hard for me. Wants to get up and then can’t open his eyes and looses his balance and doesn’t have a clue as to the danger he is in. I am not sure what I am dealing with. Perhaps we are farther into this disease than everyone else?

Everyone gets his or her variation of this horrific disease and it could be physical and/ or mental. My husband seems to have more cognitive issues than others. He will call me at work to say he is bored, but he can’t focus to read; can’t follow plots on TV that are complex- preferring the home shopping channel or sports, but he often doesn’t know which team is playing; can’t/ won’t listen to music or books on tape; doesn’t want people to visit or to go to a senior daycare . I don’t know what I am supposed to do to entertain him. He mainly sits all day and watches mindless TV & eats his lunch that I set up for him. He walks like a drunken sailor or stands with his feet wide apart to keep from falling. He gets really mean sometimes when I suggest things for him to do or when he wants to do something and I am not up for it. He can’t do anything more than glare at me and yell, ‘no’…but it is worse when he is tired. He sleeps a few hours at night and is up early …4am and then sleeps on and off all day and goes to bed at 8:30-9pm. We just applied for a disability parking pass…another right of passage. My husband is on the border of staying alone, because his balance is do bad. He is adamant that no one stays with him & I have agreed to allow him until he can’t walk. We do have people coming and going every day and I work 15-20 minutes away. I agree that his inability to articulate words is frustrating to him, but he can’t dump on m. I often have to stand my ground and tell him that he can’t treat me like I work for him or to yell at me. He still knows when he goes too far and will back off, but he is like a 2 year old with the demands. I just want to say I hear all of you and I think hey that person is going pretty well if he can still type or another can still walk unassisted. I know our time is coming soon. The disease is just a steady decline. It would help to have staging, but at least we can compare notes. Sharing helps because we can follow each other’s stories and get an idea of what is coming. Best wishes to you all. It isn’t easy!

Green Green Grass

(c) 2015 Edward C Lunnon
8 years 4 months ill …
Physical: Advantage CBD / Mental : Deuce


Physically, this week has seen the most dramatic and quickest changes in my health. There have been short jabs of pain in my gluts, weak legs, shallow breathing, muscle spasms in my left calf muscle and the crossing over to my right hand of the telltale signs of the ever-increasing paralysis in the extremities of my limbs. On a few occasions I have had to grab on to a bed or piece of furniture or the wall to prevent myself from slipping to the floor.

It comes in a week when Stilnox is on everyone’s mind … Pun intended! It is a sleeping tablet and was featured last week on MNET’S Carte Blanche as a Lazarus Pill! It has also been used in a number of cases of neurological illnesses and brain damaged patients with miraculous effects.

There are also continuing discussions on the efficacy of the use of grass (marijuana) in cases of neurological illnesses.

The question of course now is have you or have you not, and will you or will you not?

Stilnox also comes in a week when a number of our friends are receiving chemotherapy and radiation and whatever other treatments are required by Cancer patients. It is the first time that I have experienced Cancer in people who are so close to me and the closest the disease has got to me. I remain in awe as to the aggressiveness and ugliness of the disease and to the braveness and positivity of the people who have to face this scourge and do battle against it.

It’s like pouring poison into the body to kill of the Cancer cells and is so different to the neurological illnesses that I and many others have to face.

It reminds me of our lawn and trying to keep it healthy and well nourished and green and weed-free!

Let me explain:

In our cases of neurological illnesses, the weeds appear in the lawn as do the faults in our brain. There is no poison, no weed killer, no nothing that can be sprayed on or applied to kill the weeds (Maybe Stilnox?). The lawn is just left! Eventually, sometimes quickly and sometimes slowly,the weeds take over and kill the grass.

With cancer, various weed killers are applied to the weeds. For some, the lucky ones, the weeds are killed permanently and the grass flourishes once again.

For others, not all the weeds are killed, and it becomes a continuous and on-going battle to keep the weeds under control. The weeds keep re-appearing and the poison is sprayed over and over again.

And for a few, the weeds are killed off only to reappear sometime in the future and the whole process has to be applied once again!

My thoughts and prayers and good wishes go to all our friends, acquaintances and readers and listeners who battle to tend their gardens at this time!