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!

What’s on your MiND?

7 years 11 months ill with a degenerative neurological illness CBD …

Last night, Mother Nature emptied her buckets of ice and snow and water over Port Elizabeth and the Eastern Cape, answering the call to the Ice bucket challenge.

So now, this morning, part 2 of the challenge remains. To whom or what should a donation be made?

The question, of course, is “Why would you want to donate anything?”

Is it because you want to be philanthropic and donate money towards research to eradicate these scourge diseases?

I am yet to be informed that there is any recognized brain research being done in South Africa. Until that happens, I am of the opinion that NO research is being conducted. So why give your money to nobody?

Is it because you want to make my life and that of my fellow twenty-odd ill compatriots a little easier?

So who cares for us? Who makes our lives easier and more comfortable?

Who provides us with the arms and legs and lungs and tongue that we lose?

Who provides the hugs, the care, the love, the psychological assistance, the 24 hour assistance, the medication, the physio- and speech therapy, the crutches, the wheel chairs, the breathing apparatus and all the other apparatus that we need to enable us to live a somewhat dignified life – a life that we, as healthy people, take so,for granted?

In the first instance, we are dependent on our families.

In the second instance, they depend on organizations such as the Hospice Organisation (the St Francis Hospice of Port Elizabeth, in particular) and the Motor Neurone Disease Association of South Africa.

These organizations, who do sterling work, are dependent on public ( that’s your!) assistance.

So, if that’s on your MiND today, go to http://www.hospice-PE.co.za or http://www.mnda.org.za and make your donation there! All the details are there to make it easy for you. No more worries for you!

We thank you for caring and sharing.


Ice Bucket Donations

The following two beneficiaries are recommended by local MND and other neurological illness patients:

1) Your local Hospice branch.

In PE go to http://www.hospice-pe.co.za/donate/ for various donation options.

Phone Melanie Manson @ 041 360 7070

2) The Motor Neurone Disease Association of South Africa – their website is http://www.mnda.org.za/

and their banking details from the site are:

To make a donation, please send a cheque to the Secretary, or better still by electronic transfer to:

MNDA of SA, Account Number: 270629130 at Standard Bank of SA Ltd, Rondebosch Branch Code: 025009.

Swift Code (essential for International Transfers):

SBZAZAJJ 02500911.

Please make sure to notify our Secretary:

Fax: +27 21 531 6131 or

email her at mndaofsa@global.co.za or

Phone Rina Myburgh in Cape Town @ Motor Neurone Disease / ALS Association of South Africa –  @ 021 5316130

Of course, if you are concerned that you would like the donation to go as close to the patients as possible, why not be creative and do just that – give something directly to each patient in your area: a food parcel, pay the electricity account, give them product, an aeroplane ticket, pay the chemist or physiotherapist account, car service, petrol voucher, clothes, movie tickets, show tickets etc etc. Many haven’t had a holiday in years …

I was reading an article today that in many cases up to 80% of donations given are used in admin costs and never get to the patient. By using a creative method in kind, you are ensuring that your donation goes directly to the patient!