Discovery AlgoaFM Big Walk

 

Every Wednesday, on AlgoaFM, Lance du Plessis and I TALK dis-ease.

I have also had the privilege of TALKING to many individuals and groups of people, including the Graaff-Reinet and District Cancer Association. I have TALKED about and promoted their Pink Trees for Pauline Cancer Awareness Campaign on 19 October.

Over the years, I have TALKED to many folk, friends and family who have had cancer and who sadly talk no more.

Recently, Seve Chadford TALKED on our programme about “Living Positively”. Shortly afterwards, on Women’s Day, his mother, Kathryn Chadford, died from cancer. I TALKED at her memorial service.

I TALK because I know what it’s like to battle disease. I have my own daily battle with CBD. And, like a battle with cancer, it becomes a matter of raising the bar, of raising hope, raising awareness, raising funds and raising one’s voice. 

But, one can’t just TALK the TALK.

So, I invite one and all to join my family, Seve and I to Walk the TALK, too, and to walk the Walk – The Discovery AlgoaFM Big Walk on Saturday 27 October 2012.

CBD progressively takes away my ability to TALK and my ability to walk. So, don’t delay – just enter now!

It’s for CHOC!

(See also www.edlunnon.co.za and www.algoafm.co.za)

 

  

Live AlgoaFM Broadcast: Wednesday 28 September 2011

Broadcast No 76:
 
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If you missed this broadcast, you can listen to it now.

Conversations Down Under (6)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia

27 September 2011
 
Dear Ed,
 
I haven’t been in contact with you recently because I haven’t been well.  
 
I was put in our hospice for 3 weeks after i developed swollen legs and ankles with a very nasty rash on my right leg.
 
Our hospice is combined with the hospital here and they performed  some investigation procedures and they found I had small blood clots in the small veins in my legs.
 
Things went from bad to worse in the ensuing days.  I developed a chest infection and fever and lost quite a bit of my memory.I also lost my ability to swallow correctly and I could only move the food around in my mouth and could not talk properly.   Visitors came and went but I don’t remember who or when. But gradually the intravenous antibiotics started to work and it all took a turn for the better.
 
Only now I have lost the  use of my feet, my toes curl up and they put me off balance.  So now walking is impossible and i am beginning to understand how this disease works. 
 
It gives you a little bit of hope when things start going well and you feel like you are making progress, then the world comes tumbling down again and you have to start all your recovery over again. 
 
I was treated so well at the hospice that I know when the final stages of this disease takes hold that I will be very well looked after.  So my treatment now is rest, very gentle physio exercises and nothing to over stimulate my brain because it just cant take it.
 
You seem to be coping well with this disease and I hope you keep on doing so.
 
Love to you and your family
Alison

Conversations Down Under (5): My response

Dear Alison

Thanks so much for your email. I always look forward to getting news from you and to “comparing notes”!

However, my writing is also slowing down considerably. It’s not just the physical act of typing, but also just remembering what used to be easy functions, such as capitalizing letters, copying etc etc. My brain seems to forget momentarily how to do these things. I spend more time fixing spelling, putting in words that I have omitted and making corrections than I do putting the original note together! It all used to be so easy and especially when I was able to do it with all ten fingers! I am now down to about four fingers that work!

I also lose track of what I want to say and find that I don’t always finish off my thoughts. So I keep my notes for a while and fill in the gaps later!

My eyes are also a problem, and I seem to be losing my depth of perdsepion (that was supposed to be perception!). I read that your two eyes see the picture differently because they aren’t placed in the same spot. There are brain cells that then take the two pictures and make them look like one – almost like focusing the two halves of a pair of binoculars in order to get one clear picture. In our case, withCBD, those cells that do the focusing have been affected by the disease. That’s why we have sight problems.

Noise, even just normal sounds, drive me insane sometimes – whether it is just the wind, the vacuum cleaner, general conversation or really loud noises like dogs barking, shouting etc. I prefer to stay away from large groups of people now.

My body is not aching but I have experienced some pain lately, which is a new thing. However, I do get extremely weary and have to sleep for longer and longer periods. I also get out of breath and have problems coughing and swallowing.

 

The most irritating things right now are the spasms that I get down my left leg. My left bum is numb and I can’t find a place to be comfortable – sitting, lying down are problems and sometimes it is just better to stand. I have also become aware once or twice of the spasms in my right leg, so I think it has now crossed the divide. (Both my hands are affected already.)

My short term memory becomes increasingly affected and I have started doing strange things – like shopping and not knowing where I have left the goods, or standing in a queue at an ATM and then not knowing how to operate the machine! Life used to be so simple!!!

I have passed your message on to Lance – thank you very much. The radio programme keeps me going, but I must admit that sometimes I feel like it’s time to stop. However, there are so many people who listen and I don’t want to disappoint them. It also gives me purpose each week and something to look forward to.

 The last month especially has been very difficult for me, both physically and emotionally. But I am determined to pick up the pieces and start again.

In two weeks time, the musical Oklahoma is being produced here in Port Elizabeth and the proceeds from the premiere will be donated into my children’s’ trust fund. I worry about the future costs associated with my medical situation and of course their education. I studied inOklahoma(“Red Man”), and was made an honorary citizen of the State, so the show has a very deep personal meaning for me. One of the songs from the show, OKLAHOMA OK, is the state song, so we used to sing it often at school and sporting occasions!

Other than that, I have to slow down considerably. I find it difficult passing my days and not being able to do something constructive. I have also stopped driving (but have cheated once or twice!!) and that has been very difficult for me. It takes away your independence.

Give my regards to John. I have forgotten in which city you live!!

 I look forward to your next email. (I was just thinking I should have written this one without correcting the errors – and you could have guessed what I was trying to say! Thank God for word processors and spell checkers – imagine trying to do this on an Olivetti golfball typewriter!)

 Love and best wishes. Live strong!

 Kind Regards
 
Ed

Conversations Down Under (5)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia

27 April 2011 – Freedom Day

Dear Ed,
 
I am sorry I  haven’t emailed you for a while, but my health hasn’t been the best and sitting down and typing was very hard and I admire you so much to be able to do it week after week and sometimes more.   I have been having trouble with my eyes, they don’t seem to able to cope with daily life, such as reading, writing, watching television or just watching general movement of people.  I have to wear an eye mask most of the day.
 
My ears are not coping with any noise.  I find it better wearing earplugs, to dull the noise. So listening to the radio, which was the only thing I was enjoying, is now gone.  My doctor said my brain wasn’t coping with all the stimulation of the noise and sights.  So now I have to try and block most things out. 
 
My body aches continually, and I get so out of breath and as much as I want to keep denying these things are happening, they are gradually wearing me down.   A couple of weeks ago I couldn’t keep my eyes open at all.  So now with wearing my eye mask it has allowed me to keep my eyes open a few hours a day, and now this is all I can manage to type, because the weariness just overcomes me.
  
Anyway keep up the good work that you do for as long as you can.  My husband reads me your postings, we look forward to them and your radio segments and please convey our condolences to Lance on the passing of his father.
 
All for now
 
Alison

Conversations Down Under (4)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia

27 February 2011

Dear Ed,
 
I just had to show you these two darling koalas my sister found in her backyard tree.  They were gone the next day  but it reminds us how lucky we are to have such beautiful wildlife in our area. 
 
 
 Thank you for remembering that I had contacted you a few   months ago. ( I had actually forgotten, which isn’t unusual  for me these days ) and I would like to thank you for putting  the ALS video on your blog site.  There are so  many  neurological diseases and for each one that is  highlighted it is a reminder that we are not alone, isolated  yes, but not alone.  Thank goodness for the internet,  because it allows us an insight into the many problems  each of our families and ourselves have to endure.
 
I’m glad you mentioned the Baclofen medication and the problems it caused you, I found I could not take Levodopa  (which is sometimes recommended for us) I only took one and I was awake for 40 hours straight.  Definitely not good for someone who needs their sleep.  So it goes to show that we are all individuals, and one medication is not suitable for us all.
 
As for me,  I had a terrible week last week.  I had, what I would call an episode, during which I lost most of my motor functions again.  I couldn’t keep my eyes open, hold a spoon, find my mouth or walk more than a couple of steps and my speech was slurred and I thought this is it, the beginning of the end, but a couple of days later I started to get my motor functions back and while I am still a bit wobbly and my speech is not the best I am getting back to where I was before.   I feel now I am beginning to understand my body and what is happening, although I would like to know how fast this disease progresses.
 
I’m glad you are looking at a wheelchair.  It certainly is a mental thing to get used to having to have one, but it has helped me immensely and if you learn to use it now, while you still have a lot of your cognitive abilities, then its easier to manoeuvre when you need it, ( and its definitely not as easy as it looks ).  I left it a bit to late to learn how to use mine,  I get confused and its easier to just let my husband push me.
 
Thank you for sending me the links to your radio programmes,  my physiologist listened to them and she was very impressed, especially with how much its able to help me.  We were able to get your radio programme last week, the wireless connection actually worked.  Its on at 7 p.m. here.  Its wonderful to think we are so far away from you but we are able to listen in real time and Lance is wonderful to allow time on his programme to help bring awareness to this horrible disease.
 
And as for you Ed, keep up your wonderful work.  I can imagine how hard it would be at times, but your a wonderful inspiration to us all.
 
All for now. 
Alison

ED is in wED – Live AlgoaFM Broadcasts

Click here for 2012 broadcasts.

Listen here to previous broadcasts in 2011:

(Click on the right arrow to begin. Adjust the volume by clicking on the loudspeaker icon)

28 Dec 2011 (no 89) ↓ (The Gift)

21 Dec 2011 (no 88) ↓ (from Graaff-Reinet : Valley of Desolation)

14  Dec 2011 (no 87) ↓

07  Dec 2011 (no 86) ↓ (with Charl Leslie)

 
30 Nov 2011 (no 85) ↓

23 Nov 2011 (no 84) ↓

16 Nov 2011 (no 83) ↓ with Charl Leslie

9 Nov 2011 (no 82) ↓

26 Oct 2011 (no 80) ↓

2 Nov 2011 (no 81) ↓ – PART 2 – with Briony Sparg

2 Nov 2011 (no 81)  ↓  – with Briony Sparg

19 Oct 2011 (no 79) ↓

12 Oct 2011 (no 78) ↓

5 Oct 2011 (no 77) ↓

Wed 28 Sep 2011 (no 76) ↓

Wed 21 Sep (no 75)

https://edlunnon.files.wordpress.com/2011/02/ed20110921.mp3

Wed 14 Sep (no 74)

Wed 7 Sep 2011 (no 73)

Wed 31 Aug 2011 (no 72)

Wed 24 Aug 2011 (no 71)

Wed 17 Aug 2011 (no 70)

Wed 10 August 2011 (no 69)

Wed 3 August 2011 (no 68)

Wed 27 July 2011 (no 67)

Wed 20 July 2011 (no 66)

Wed 13 July 2011 (no 65)

Wed 6 July 2011 (no 64)

Wed 29 June 2011 (no 63) – Elvis Blue, Hannes vd Merwe, Craig Condon, Andre’s Hair Design, Festivals, Hospice

Wed 22 June 2011 (no 62)

Wed 14 Sep 2011 (no 74)

APOLOGIES FOR THE SOUND QUALITY ON NO 58 AND 59!

Wed 1 June 2011 (no 59):

Wed 25 May 2011 (no 58)

Wed 18 May 2011 (no 57)

Wed 11 May 2011 (no 56)

 Wed 4 May 2011 (no 55) – Osama Bin Laden, Royal Wedding

Wed 27 April 2011 (no 54)  – Freedom Day – broadcast from St Francis Bay South Africa

Wed 13 April 2011 (no 52) – Neil Diamond, IronMan SA

Wed 6 April 2011 (no 51)

 Wed 30 march 2011 (no 50) (Fracking) (Part 3)

Wed 30 March 2011 (no 50) (Fracking) (Part 2)

Wed 30 March 2011 (no 50) (Fracking) (Part 1)

Wed 23 March 2011 (No 49)

Wed 16 March 2011 (No 48)

Wed 9 March 2011 (No 47)

Wed 2 March 2011 (No 46)

Wed 23 February (No 45)

I Can See Clearly Now!

Tuesday 22 February 2011: 4 years  5 months on …

When I read the original blogs that I wrote about a year ago, they were so much more positive. Things were going well and I was very upbeat. The tone of those blogs was very bubbly, and this seems now to have disappeared.

I have a choice to make – to continue writing about the champagne and the “bubbly” things and pretend that all is well. Or else, if these blogs are to be an accurate record of my current journey, then I have to be truthful in my writing and also document the occasions when the champagne loses the bubbles and becomes a bit “flat”!

My apologies, therefore, if everything is not always upbeat. If you find it difficult to read, then you can imagine how difficult I find the actual experience. It is so easy to allow yourself to be sucked into self-pity and so the trick is always not to be drawn into it, but to find an appropriate way out of the cesspool.

So, about a month ago, on 17 January, I went to see the GP. I had a chest infection and the spasms down my left side were becoming unbearable. By now, the antibiotics and the syrup have helped clear the infection and my breathing has improved considerably. (You may recall that as the CBD progresses, the diaphragm and the lungs also become a problem for the brain to control, and that pneumonia becomes an ever-increasing threat.)

The spasms have been more difficult to control. I have written before that most of the medication that I get is often on a trial-and-error basis to control various symptoms. From discussions in the CBD chat group that I found on the Internet, and from the emails that I have received from fellow CBD “friend”, Alison Bevon in South Australia, it would appear that trial-and-error is the norm. It is also a favourite topic discussed at meetings of the Parkinson’s Support Group that I have attended.” Take what the doctor gives you and play around with it” appears to be a common thread through the experiences of neurologically-impaired people.

Furthermore, with symptoms varying so much between “patients” and medication having varying success rates, it becomes quite a difficult situation to manage. The patients really require patience! There certainly appears not to be a “one size fits all” solution!

I was prescribed Bacloffen for the spasms – 2 daily for 10 days – and let’s see what happens! Well, by Monday 24th, nothing really had happened in terms of spasm improvement.  However, I was starting to feel like I was constantly experiencing a hang-over! And the 24th was my date for my annual “check-up” (read “report back”) with the neurologist.

This annual get-together is required from my insurance company in order to provide them with a written report that a miracle has not yet happened and the CBD has suddenly disappeared by Divine Intervention!

So, for R500, I get to do all the talking and “report back” on what has happened over the last 12 months. He listens attentively (and yawns a few times) – I guess when you are one of two neurologists in a city of 1,5 million people, then all this is hard work, long hours, and possibly, a tad boring.

He gets me to do the walking, the finger and hand exercises and then taps the knees and elbows with that little hammer. Not much is said from the other side of the table. I asked whether the slowness of the deterioration could suddenly change into a sudden over-night regression, and I was relieved to hear that this was highly unlikely. It would appear that “in medicine, if things happen fast, they happen fast – if they happen slowly, then they continue slowly!”

He is interested in the Bacloffen, and suggests that I stop that, and rather take Rivotril, (0,5mg) 3 x day. Let’s see what that does! And collect the report later in the week …

Well, the next few weeks become a haze of confusion. My body appeared to melt down: I was weary, my arms and legs weren’t working, and my mood was terrible, the tears rolled freely, the brain was confused and the memory was …..well, what memory? I seemed to waft through the mists of time. Now where did I hide the Easter eggs – sorry, the Valentine’s chocolates?

 My family say I had the devil in me!

We contacted the Hospice to make the arrangements for that dreaded wheelchair, and they also sent a nurse and a doctor to come and see me at home. (Funnily enough, when Sr Le Roux returned the following week Thursday for our then-arranged weekly meetings and apologised for being early, I had to enquire who she was and what meetings she was talking about! I simply could not remember anything of the previous meeting that we had!)

 Was this the beginning of the end?

No, it wasn’t! And when I consulted with the GP and Specialist some ten days later, they agreed that possibly the symptoms I was experiencing were but the side-effects of the Rivotril. So now wean yourself off those tablets and then stay off for a few days to clear the system. And then we’ll try again!

Strangely, I normally read the insert in the pill-box before I take any medication. This time there was no insert to read. But when I came off them and started feeling better, I googled the tiny little yellow buggers, lo and behold, I was warned by the intelligent internet of all the wonderful side-effects that could be expected from the Rivotril – exactly all that was happening to me!

The lesson I have learnt is to ASK the doctor what side-effects to possibly expect and definitely to read the pamphlet or google the internet – to be forewarned is to be forearmed!

Within a few days, I started feeling better, but as the devil receded, the spasms returned. So now, we are trying (instead of 3x day) a half tablet once a day for a week and then a half twice a day for another week. I have also altered my Carbolev (dopamine) intake from 2x every eight hours to 1x every four hours. For someone with dementia to remember all this is becoming a nightmare – thank goodness for cell phones and regular recurring reminders to take my pills!

But, so far so good, the devil is still at bay and the spasms have almost completely disappeared – just one or two every now and then. If only I could work out what causes these now intermittent short circuits!  And the on-going hangover!

Coincidentally, a discussion commenced in the chat group about the use of Baclofen. It has made interesting reading  in the group to see the differences between people with the “same” illness: what tablets are helping some people and not others, the timing, the dosage, the side-effects, the efficacy … no wonder it’s just all trial-and-error!

And in amongst this all, my eyesight has been deteriorating – so the reading on the screen has not always been the best. And if I didn’t greet you, it’s most probably because I didn’t see you!  But I have been delaying an eye test because I have been aware that new specs will blow my medical savings account that has to last the family for the rest of the year.

However, I am extremely grateful to Bryan Dowley (MD), Tim Seaman and Spec-Savers – The Bridge, Port Elizabeth for sponsoring my new spectacles. It has re-opened a new world.

Once again, I can see the world around me. More importantly, I can see the kindness of people who support me. I can see the numerous difficulties that so many people face every day. I can see that there is still so much to see and do. I can see clearly now!

I am just disappointed that, because I was not feeling well, I had to cancel two appointments: one to the Concert in the Park and the other to Brett Parker’s birthday party. There’s still next year!

On a lighter note: I can see that there is still much to be grateful for:

Subject: The absolute best Little Johnnie joke
 

Little Johnnie’s neighbour had a baby. Unfortunately, the baby was born without ears.

When mother and new baby came home from the hospital, Johnnie’s family was invited over to see the baby. Before they left their house, Little Johnnie’s dad had a talk with him and explained that the baby had no ears.

His dad also told him that if he so much mentioned anything about the baby’s missing ears or even said the word ears, he would get the smacking of his life when they came back home. Little Johnnie told his dad he understood completely. When Johnnie looked in the crib he said, ‘What a beautiful baby.’

The mother said, ‘Why, thank you, Johnnie. Johnnie said, ‘He has beautiful little feet and beautiful little hands, a cute little nose and really beautiful eyes. Can he see all right?’

‘Yes’, the mother replied, ‘we are so thankful; the Doctor said he will have 20/20 vision.’

‘That’s great’, said Little Johnnie,’coz he’d be stuffed if he needed glasses!

PS  At this time of yet another devestating earthquake, my thoughts and prayers are with my sister, sister-in-law, cousin and their families and our many friends who live in New Zealand.

Health-Meter

Cognitive Excellent===================Average============================Poor
Memory (Short) **************************************
Executive function *************************************
Spelling *****************************
Figures ****************************************
Physical  
Left hand/arm *******************************************************
Left leg/foot *******************************************
Right hand/arm **********************************
Right leg/foot *
Lungs *******
Swallowing *
Spasms left side *************************************
Spasms – right side *

Red stars = Deterioration / Green stars= Improvement (from previous week)

Conversations Down Under (3)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia 

Mon 14 February 2011 – Valentine’s Day: 7h30 am
 
Dear Ed,
 
I found your drawing of a brain in your last blog and your scrap of paper with your possible diagnosis quite recognisable.  Its a problem that I wish the medical profession would acknowledge and that when a person has a terminal illness diagnosed we are given as much information as can possibly be given.   As I wrote before I was given a
 
(end of e-mail) 
 ——————————————–
 
 Mon 14 February 2011 – 9h04 am
 
Dear Ed,
 
If you are wondering what was happening with my last email,  I pressed the send button instead of the save to drafts button.  Sometimes as you know we get jerky fingers and mine jerked at the wrong time. 
 
What I was trying to say was I understand the stress of getting the news of your condition via a sketch or just given a name like CBGD.  If I could do anything Ed,  it would be that anyone diagnosed with a terminal illness could be given as much information as possible and given support as soon as possible without that terrible wait where you are on your own with that awful news.
 
Because like me you were possibly trying to explain it to your family by just having the information you gained from the internet.  As I wrote before my neurologist gave me a computer printout containing medical terms that I couldn’t understand and we had to go home and look them up on the internet so we could thoroughly understand what was happening to me.
 
I was interested to hear about your medication.  Isn’t it strange how everyone reacts differently to the medication we are getting. I found that the Baclofen has really helped with my muscle spams, but if I remember correctly it took me a couple of weeks to get used to it and for it to start to work properly.
 
I have gone to your web page and its looking very good.  I feel that it will help a lot of people, and anything that gives people an insight into the various brain malfunctions is a wonderful idea.
 
My palliative care physiologist  came for a visit today and she listened to your radio programme where you mentioned me and she was very pleased that I helped you and that you were helping me with dealing with this disease. She said to say hello to you and said she was very glad again that she had read your Heathrow article.
 
All for now Ed,
 
Wishing you well
Alison

Conversations Down Under (2)

E-Mail Conversations with Alison Bevon – CBD Survivor South Australia 

4 February 2011

Dear Ed,
 
Sorry to hear about your wiring problems on your blog.  You explained that so well. 
 
I admire you so much for  being able to communicate so well.   Its very confronting to see your medical problems in print but what you do is so helpful to people like me, suffering this horrible problem and also for the general public, who really don’t understand what CBGD is.  My husband thought your blog was very helpful and we both had a laugh at the end of your article. 
 
I, too have had an awful week.  We have had so much humidity here this week, and I suffer horribly in the humidity.   I feel like I have a muscle and brain meltdown.  Nothing works together.  I have to have the air conditioner on all the time to make me feel a little better. 
 
I hope my last email wasn’t too confronting for you and your readers.  I tend to forget that some people have different views regarding end of life issues and I would hate to think that I caused you or your family any distress.   My husband took awhile to accept my decisions, but he has accepted them now and I know he will not go against my wishes and even he was the one who suggested that I donate my brain for medical research after death.  So we researched that together and made all the arrangements and I feel so much better knowing that I have done something to help other people with this disease and also because my Mother died from the same symptoms as I have now. 
 
She  was diagnosed with Miniers disease when she was in her fifties and had regular bouts of dizziness and nausea.   It wasn’t until she was 75 that they realized she was having seizures and it wasn’t Miniers disease,  by then she was also diagnosed with dementia and a few weeks before her death, her right arm was wandering up and down, she couldn’t talk, walk or swallow.  So, I believe she had the same symptoms as I have but she wasn’t diagnosed properly.  She didn’t have an autopsy.  I wish she had, it would have answered a lot of questions.
 
 So that is why I had my DNA taken, so the family can keep track if any more of us come down with similar symptoms.   They did find an variant of uncertain significance in the PGRN gene. They were only checking for frontotemporal dementia and it should become clearer in the next few years whether this is related.  Although you don’t seem  to  have  dementia because you write and speak so well.  Do you any have cognitive problems?  I hope you are one of the lucky ones to escape that part of this disease. 
 
I wish you well Ed, and I hope the doctors have helped you with your medication.  Look after yourself and try not to get too hot or too tired. 
 
Thinking of you
 
Alison