Ed is in wED with Tove


Life is so Short … a transcript of our discussion today on AlgoaFM (pod to follow)

Life is short, and it is up to you to make it sweet. – Sarah Louise Delany

As I roll into my mid-50s, the urge to cherish every day grows stronger.

The things that once annoyed me now remind me that life is in motion. Over time, the challenges and setbacks give way to victory and contentment.

I’m realizing that even in my most anxious moments, there’s always an opportunity to see the blessings. But I have to choose to open my eyes. Learning to be happy with what I have is another lesson that’s finally soaking in.

It’s also becoming clear that I can’t get to the place where I want to be without letting go of the things that keep me stuck in a place fear and self-doubt.

And where is that place?

It’s a place of peace. It’s a place of knowing who I am and what makes me happy. It’s a place that tells me that life is short, so…

…tell the people you love how much you love them.

…share your heart. There’s no time to leave important words unspoken.

…be kind for no reason.

…eat cookies when you crave them.

…do what scares you. Take a chance – be bold.

…take a nap when you feel tired.

…don’t run from you past – learn from it.

…embrace getting older.

…ask for what you want – believe you are worthy to receive it.

…ignore what others think of you.

…don’t try to be perfect.

…love yourself completely.

…reconnect with old friendships

…seek new friendships.

…experience the world. Travel to the places that are calling you.

…find a job that is aligned with your passion. If you can’t, follow your passion anyway.

…focus on what’s important and let go of what doesn’t.

…if you see a chance, take it!

…give yourself permission to be happy.

…face what scares you.

…leave anger behind.

…laugh as much as you can.

…make peace with yourself.

…by inspired by your faith.

…let go of the people who will never love you back.

…forgive quickly.

…kiss slowly.

…smile at what delights you.

The trouble is you think you have time. – Buddha

Life is a one-time offer …use it well!

(with thanks to Alex at The Bridgemaker.com)

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!

CBD Notes (1)

I thought I would share with you private notes that are circulated between some of us who are CBD sufferers and their 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!

My husband seems to want to go to bed earlier and earlier. I try to keep him up to about 8:00 p.m. at least and he sleeps until about 6:00 a.m. If he stays up much later then he seems to get agitated and then it’s difficult for me to do all the get to bed routine and transfer him safely. We had a very difficult evening earlier this week because he was angry that I had pushed him in trying to keep him safe…..similar to what V described. So he agreed that I can get someone in several times a week in the evening to do the routine to get him to bed. Tonite is our second time. With whatever time we still have together as a couple, I would like to have a good relationship and be more of a wife than just a caregiver. I love when I can get him to laugh or smile or see a little twinkle in his eyes. Doesn’t happen often enough. C’s issues are more movement related, diminished speech capabilities and now swallowing issues. Cognitive is slower but not terrible. He just can’t get out the words he wants to say. We all know what a thief this disease is for our loved ones and all of us as well. My husband is ready to have it over and there are days thaT I feel the same way……but then I get real sad. Janet Edmunson recently did a webinar on Anticipatory Grief……and that’s where I am and probably many of you are as well. Perhaps Janet or Robin could provide a link for the webinar for any of you interested.


My husband stopped using his ipad about 4 months ago. He doesn’t have the control of his left hand very much anymore and the right hand is “alien” and of no use. He can still get some words out, better in the morning and clearer during the night!

Motor Neuron Diseases



Franclo Henning (Chairman) with Aviva Pelham (Patron) and Sheila Kendall (Vice Chairman)

Dr Franclo Henning was one of the specialists at Stellenbosch University/ Tygerberg Hospital, Cape Town, who diagnosed me with CBD.

He is also the Chairman of the Motor Neurone Disease Association of South Africa (MNDSA).

Listen here to his radio interview on RSG (Radio Sonder grense) today:

(it’s unfortunately in Afrikaans)



I Remember Sonja

7 years 7 months on …
Mental: Advantage CBD / Physical: Advantage CBD


I remember Sonja van Rhyn …

Last Friday I was at home in The Strand. Sebastian, my nephew, took me to see Sonja, unannounced! We were at Hottentots-Holland High together. She was diagnosed with MSA (Multiple Systems Atrophy) shortly after my diagnosis and is now confined to a wheelchair. I caught her in bed!

Loubser, their son, has been visiting from London and has been there for some six months now. He made me coffee and we chatted for a short time ..just twenty minutes or so.

It was great catching up with Sonja, it was great meeting Loubser. Whoever knows whether our paths will cross again on this earth. When i said goodbye, it was with a lump in my throat. I have learned to wipe the tears away, privately and discreetly, I think!

Sonja sets such an example to me. She keeps a blog site too – please read it at http://msainsouthafricawithsonja.blogspot.com.

Karin Holtshauzen, also from HHH, is such a star friend to Sonja, and then there’s Lilian, the domestic, who has even undergone a course in home care. Together with Sonja’s husband, they give Sonja such great support.

But, too soon, I had to leave.

I will remember …
those twenty odd very special minutes.

Today, Louber left for London. Sonja wrote the following:

He left in the night. Part of him will always be here living in my heart. In the olive tree he planted (which he fed, one last time, with Seagrow last night in the dark). In the memories of 6 beautiful months he spent with us, mostly putting our needs before his. I wish I was so selfless at that age. We learnt much from each other. I am thankful. I let him go…

I am so thankful for those special moments when we discussed that favourite city London … when you grow tired of London, you grow tired of life!

Neither Sonja nor I are there yet!

I will remember …


I Put it to You …

Tuesday 18 March 2014

7 years 6 months on …

Advantage CBD

The stories are happening at an alarming rate. World news that is, and with the benefit of modern technology, it all unfolds right in front of you in your living room.

One needs lots of time to follow it all. And I have lots of time. As the CBD progresses, I am spending more and more time at home. The TV and the internet has become my window on the world.

Its been civil war in Syria, the take-over of Crimea by Russia, the disappearance of the Malayan Boeing 777  and the Oscar Pistorius murder trial. Theories and more theories abound.

But another story for us is the ongoing fight with our medical aid. It’s not a unique fight.

Because of a change in Pera’s employment status, we have moved from one medical aid to another. Despite assurances that my medication would be covered, we have now for two months being fighting to get my Carbilev and my Lyrica tablets paid for by the medical aid. These meds are my life-savers and after seven years, we have got the dosage, timing and frequency down to a fine art. Now the new medical aid says NO, we won’t pay for those, you need to take generics.

We haven’t even got to the physio, bio, massaging, exercising etc etc yet!

The fact that degenerative brain diseases are not included as PMB’s (Prescribed minimum benefit illnesses) does not help at all.

So I put it to you, those of us with these illnesses are being discriminated against, and so we have another fight on our hands.

It’s easy dealing with CBD. It’s hard dealing with beaurocracy.