Zara came home one day with very watery eyes and told me about this song, which would be perfect to make a video for the children. In the end it turned out quite well. So I thought I should share it with everyone!! My plan is to show it on father’s day.
How to talk to me
I’ve realized that Zara has developed the perfect way to talk to me. She repeats every word as I say it… so we know what words to repeat. It works really well. The worst thing for people to do is just look at me… I can tell when you don’t understand … it’s written all over your face!!
Another annoying one is miming the words… very confusing and it means I have to repeat the whole sentence not just words… which after a while can tiresome for both of us. I was talking to someone who had a family member with MND… and she did it all brilliantly…. even…’no I didn’t get that‘. We all have to be patient.
Sometimes when I need to get a word out I have to tilt my head to the left and look up at ceiling… I don’t know why but it works… although it looks very strange. A few people wondered what I was looking at!!!!
Carers
We have a great bunch of carers, who go out of their way to help us and who we really depend on. However August is going down as the worst month as for their own personal reasons we lost five carers. We have just finished a massive online and offline advertising blitz but you would think with my experience in recruitment in the UK and Australia…. It would be easy!!!... Ahhh how wrong can I be! We’ve had people not show up for interviews and even ones that didn’t bother turning up for their first shift!!! We have tried all kinds of things to prevent this…. but that is human nature for you… maybe it’s a Ying Yang thing!!!! I think we are nearly there and now going through training.
Guam in the 50’s
I just came across this video. It comes with a warning… it may be disturbing to watch for some. But it made me think that when this was shot (maybe the 50’s) that we are really not any closer to understanding this disease and in a way, we are following the similar path as to those in the film. Obviously the equipment and care has moved forward but the disease just looks the same!!
About the movie:
The world's greatest concentration of ALS (Lou Gehrig’s disease) has been found on the Pacific island of Guam. This discovery made by Dr. Leonard Kurland is shown here in this video.
I have just come back from another four days of respite. After my last posting I was in trouble! The cook was bought down to my room and introduced to me and I was informed that I could request other meal options!!!... so now I know some staff read my posting (hello !!!!!!! )… I’m keeping quiet! While I was away Stephen Bergman came and took me out for lunch, a few beers and the batman movie. On the way into the movie I had a bit of a problem with the wall…. It was slightly convex and somehow got stuck…. So I put the throttle down… whammo… into the rubbish tin… and then my wheelchair arm broke away!!... it was very funny given we were in a darkened movie theater!!!!
It was always my intention to put into plan well before it’s urgently needed a place where I can go and my family can get a break from all things that is MND. For those who are not in this world I have got these from Wikipedia.
‘Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home. The term "short break" is used in some countries to describe respite care. ‘ ‘Even though most families take great joy in providing care to their loved ones so that they can remain at home,[citation needed] the physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver. Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family caregivers who make this possible.’ ‘Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving.’
So thanks to Anne Bergman who used to work there I went there for three days and two nights to see how it goes. The home is not an old persons home but rather a lot of younger people with all kinds of conditions. After a week of making sure all my technology was working I arrived with my laptop, iPod, DVD’s and my page turner… I was ready for the adventure to begin.
I’m going to cheat a little now and paste my emails to zara while I was there…
On 18/6/08 8:15 PM, "Matthew Fraser"
Everything going well.. i watched 2 movies played some golf
stafff are very good very proff
food is shit
everyone leaves me alone which is quite nice
talk soon
On 19/6/08 4:12 PM, "Matthew Fraser"
that was the coolest email you wrote....i didnt know if to laugh or cry...its very hard to type with this headmouse so ill be brief...
im watching on the camera but only seen olly!
slept ok...not having the pill makes a strange night...lucky i didnt have the pill as i had to listen to the lady fart and piss all night.shes having one now! it makes me laugh...
food still shit...tonight is meatballs...yummmmm!
had good day...massage with john, movie in the afternoon with peter who is a resident here ....quick drive around outside...
overall its good...apart from the food...
On 19/6/08 9:07 PM, "Matthew Fraser"
well written card
give her a big hug from me
stupid carer on tonight...they wanted to put me to bed at 83o...i said NO!
putting to bed should be interesting!
ill write tommorow ...video the morning
as for themeatball...whats my pet hate with food...all mushed up and even a spoon feeding...
feel better now ive watched a gory movie...
goodnight
On 20/6/08 11:16 AM, "Matthew Fraser"
sounds like a fantastic morning and alot of fun...u did an amazing job in choosing her presents....
last night went well a proff turned up with the useless one and was brillant..i even got my balls washed...which was a little suprising!!a little slow this morning...got up at 839...next time i may use my own carers...and think about takeaways!!! today is fishfingers!!
see you tonight.,...
It was a strange feeling to be in that environment when on the outside I look and behave in a similar way, with the same grunting snorting and laughing as the residents. But on the inside I’m still me. I felt like an imposter in disguise. This made me realize how trapped I am becoming. Overall it was a good experience and I will be going back for three nights every month or so depending on when they fit me in.
It was Margot’s 3rd birthday on Friday when I came home to a family gathering for her. Dad passed me some Champaign and blue cheese on crackers. Margot singing into her new microphone while beating the new drum. It was good to be home.
For the second week of the school holidays, Zara and the kids went away on holiday. My Mother in-law moved in and my brother, Simon flew in from Singapore. This is Simon’s blog on the week.
My Week of Respite Care - (by Simon Fraser)
..."Ok then...see you later...I'm off to see Uncle Matt, Mamma and Granddad...be good for Mummy"
Back to CHCH to hang out with Matt for a week...in truth I was looking forward to it...we would be hanging out at a slow pace...I wasn't required to rush around.
No substantial change in Matt...although when you can do nothing for yourself it’s pretty hard to see how much worse it can get...it was difficult understanding Matt and I did resort to "sounds like, how many syllables...starts with" type game with him...if that didn't work it was on to questions like "are we talking about you or me?" Is it about food, comfort, warmth, entertainment"? Or do you want me to do something? Certainly made for entertaining conversation.
I did have to ask Mum about Matts teeth..."has he had them whitened"...apparently that’s what they look like when you stop drinking coffee, tea and red wine....not a bad advertisement I thought...
Given Matts loss of weight and his concern over that weight loss....I should not have been concerned when at lunch time we visited major food groups that we were only allowed to eat once we had left home....Matt was very particular...."filet o fish and 6 chicken nuggets WITH sweet and sour sauce"...and the next night he waited until I had left before Dan (his evening carer) was dispatched for the "family bucket of KFC" with a little bit of coleslaw....and let’s not forget the pizza food group that also made a showing...along with the Rutland Street fish and chips...clearly it was a week when the carrot sticks, celery, broccoli and other fibrous material had a holiday as well....
It was great to see firsthand what Matts normal week is like (apart from the food)...the Trust is fantastic as it does allow Matt to enjoy activities which at best slow the progression of the disease down, but more importantly give him the opportunity to focus on something which clearly helps him emotionally...although for the life of me I cannot understand why he and John (his masseuse) rave about "good pain"...in my book any pain is BAD pain...which is why I turned down the massage and the reflexology..(A couple of cheeky beers at lunch were good therapy for me).
The week I was in CHCH all the talk was about how the central city is a warzone and crime is surging...blah blah blah...in fact if you listened to closely you would think CHCH is turning into a third world city....seeing how people interacted with Matt gave me a great feeling...from his older neighbors asking after him and his family as we tooled along the footpath...on the way to another lunch with bad food groups, to the kids several doors down coming in to tell us his car lights were on (just as well, as they may not have been much love given to me by Zara if she came home to a flat battery), the pacific island girl at the movie theater (who clearly knew her way around the popcorn coke combo) discussing Matts ability to do wheelies in his wheelchair...and of course the many people who help Matt on a daily and weekly basis...even though they get paid (I guess a $2 charge at Burwood could be considered paid) I never once felt that Matt was being treated any differently because of his inability to move or talk...(although he does wish that I closed the curtain at the pool)...big handclaps and loud whistles to you folk...with people like them I see why Matt is able to maintain a good sense of humor.
Matt’s entertainment is somewhat more iffy....his latest love being online poker....."Only 1 click away from using real money"...although fair shake of the sav....he can't get to the credit card to type the numbers in...and having played it with him...it is just as much fun playing for funny money...without the stress....Zara's mother was there for the week...and although not voicing any concern for online poker...whisked Matt away for a lesson in Bridge so Matt will be able to enjoy more that 1 card game online...his taste for movies has clearly been affected by the disease.....insisting we go to "Ironman"...(its about a superhero not an athlete)....and then forcing Tim (the other brother who had come down from Wgtn) to take him to Street Kings..confirmed that he had indeed left his taste in the fridge.
During the week I tried very hard to get him interested in "the beautiful game" English football...to no avail...but he and Muffy (his mother-in-law) had to endure 3 mornings of me shouting at the TV urging my Chelsea team onwards and upwards (it worked as Chelsea are in the Euro Club Champ final and are still in the hunt for the league title)...we did have a couple of beers on the Friday night watching an incredibly boring Crusaders game..in fact the best part of the game was watching the southerly rain sweep across the field while were toasty warm drinking pinot and beers (in different glasses) in front of the fire.
As most days we "did lunch" I would like to comment on where we went...Aikman’s in Merivale has had a huge amount of money spent on it...clearly the inventiveness and imagination was all used up when they got to the kitchen...great place to have a few beers....lousy place for food....We still rate Bridgette’s in Merivale as fantastic...we had a very pleasant lunch with Matt and Anne Hunter (made even better that Matt Hunter paid...should've ordered that bottle of Krug....)...although there was a lot of table and chair shuffling that had to be done (all with a smile by both staff and patrons) to accommodate Matts mobile (as in Bat Mobile...not phone)...we also found a German restaurant in Poplar lane (off Litchfield)...great sausages potatoes and gravy...will definitely return there..along with good German beer...Matt even found time for a big bad apple strudel (we both still struggle with what the point of sauerkraut is...but then we are not German)...Terra Viva by the airport was "quite nice"...a bit too much hairspray and big earrings for me..food was good though...and Rutland Street fish and chips still rock!
I did notice that since I last saw Matt his food has to be cut up a lot smaller as there is the danger of choking....sadly that is a real reminder about what a shitty disease MND is....BUT he still enjoys his food...
I would not like to finish this "blog" without a reference to something cultural that we did....Matt and I went for a walk in the Botanical gardens when it was a nor west day...23 degrees...leaves have turned but not yet all fallen....a good time was had...as it was school holidays we witnessed many "16 yr olds" walking hand in hand through the park....what they all had in common was that you could see the guy desperately seeking out a bench that was "out of sight" in order to more physically demonstrate his affection..while the girls was enjoying the walk and the very expensive ice-cream that was bought for her......ahhhhh to be that young...and desperate again....NOT
Anyway....time to go now..am already looking forward to the next "respite care week"
It’s certainly getting a lot harder to understand me these days, so much so that all non essential communication is being thrown out the window. My speech is still deteriorating and my left leg is weaker but overall I’m doing quite well and there doesn’t seem to be anything major going on…
About six weeks ago I had a poor breathing test with the FVC of only 38%. This is a very dangerous level that would mean the use of a Bipap machine to help my breathing. But because my face muscles are weakening my lips failed to get a good grip!!! So we agreed to redo the test and last week my FVC score was 66%. This is a 2% decline from my last correct test which was about 5 months ago… this is quite good!
I also had my three monthly check up with the Neurologist last week. We are concerned with the amount of weight loss. A lot of people comment on how well I’m looking. The reality is that weight loss also means muscle wasting. If you look at my profile
on this website that links to patientslikeme.com you will see a worrying trend. In 4 months I have lost 4kg, but I have put this down to moving less and thus eating smaller amounts. According to the chart and my BMI…. I’m still obese!!!
I’ve discovered an old past time –‘doing lunch ‘. A most enjoyable way to spend an afternoon! It all started with Peter Parmenter offering to take me out and about in the van. The first outing was very funny as we spent most of the time in a petrol station as Peter attempted to find the petrol cap switch!!! Eventually having succumbed to pressure he rang Zara!! Last week was the first ‘lunch’ with all my old work collogues-new photos have been uploaded. It was a great afternoon and thank you to everyone especially Richard McIntosh who because of where he sat, had to feed me… and did a great job. Peter and I have decided to do this more often… so be warned… large ‘obese’ man in bright green wheelchair is coming to a restaurant near you!!!!
And finally here’s a small video of me doing my assisted walking with the help of Dad and filmed by zara.
It has been awhile since my last report. The reason is very simple; I’ve had nothing to say. I have been on lithium now for a month or so with no side effects. It did take a while to get to the optimum blood level of 0.4 mmol/l, although the last blood test was only 0.3 mmol/l. There have been some changes with my speech deterioration and my left leg is being less responsive especially when transferring at the end of the day. Overall feeling good with nothing major going on.
I have been feeling more like a disabled person lately, rather than a person with a terminal illness. I’m looking more at how others cope, what they do with their time and the issues they face going out into the community. It’s a total mind shift but something I have become aware of. Maybe this is a sign that I’m going to stabilize!!!.... Let’s not hold our breath yet…
A friend of mine gave me a massive collection of DVD’s… and I became a junkie… watching them on my computer. Sometimes three a day every day… not particularly sociable… but have stopped now… I’ve watched them all!!!! I need to find another project and start reading again…
There has been a significant, but small scientific breakthrough. Have a look at the video. This means they are a little closer, but still a long way off from the cure.
We have some Food From Friends cookbooks left. Demand incredible - get your orders in now for those present giving days (Mother's).
See the website link -ALS MND Lithium Treatment
This is very interesting study and something I was very excited about. I see a lot of these coming and going nearly every week. So talking to a friend of mine that also happened to be a doctor, he was able to give me a neutral view of the study. Although some flaws with the study, mainly the small number of participants I was able to get my Neurologist and doctor to give this a go with close monitoring including blood levels. So I have started taking 250mg Lithium carbonate daily.
The main thing about this is it is NOT A CURE, but may help slow the progression… so let’s just see!!
In the meantime we will keep boxing on…
In January I had my regular three monthly meeting my Neurologist and Respiratory specialist. My brother Simon and Zara came along to the Neurologist. My big question was, why and what is causing my speech problems and the answer was interesting. The message from the upper and lower neurons to my face lips and tongue are slowing down. He showed me simple examples like saying ‘memememe’ and trying to move my tongue from side to side. This gave me the idea to focus some of my therapy onto helping my facial muscles. So far we are having a face massage including inside the mouth and acupuncture… yesterday I had about 10 needles all over my face!! I am trying to get my speech language therapist that the government provides to come up with some exercises… but some reason they seem very elusive!!
The Respiratory meeting was a disaster. My FVC was very low down to 32%... which was a big shock for both of us. We believe an error may have occurred and in eight weeks we are redoing the breathing tests. At this level I am prone to chest infection, which is my worst enemy!! Every night I a practicing my breathing technique. My breathing actually feels pretty good…
We now have eight carer’s helping us at all hours day and night… it can be a very busy house hold and a little relenting at times. It’s worse when we don’t have them. We are now trying to put together backup teams… but as you may appreciate that is not an easy task!
I will keep you posted on how the lithium goes…
We still have loads of book left, but they are now being stocked by Ballantynes, Quinns, Mercato, The Press and Traiteur. The website is still up and running. Thank you for the support from everyone.
We had a great Christmas and thanks to Zara’s exceptional organizational skills there was no stress and Christmas morning with the children was fantastic, one etched with great memories for everyone. The week between Christmas and new years was going to get ugly with no down time for zara and most of the carer’s going on holiday. So I opted to go into respite care. The good thing is that I go to my parents for a whole week. I read two books and watched 14 movies and a lot of snoozing. Respite is a necessary evil but emotionally it is very difficult to cope with for everyone, especially for New Years Eve. The plan is to do it more often. My greatest fear is what starts as a few days every month will end up being full time in an institution. I don’t think I could handle that.
Had a few long lost friends from my past visit over the holiday period, which is always great to see people and just chew the fat. I imagine this would be quite hard to take time to go and visit someone who can’t talk very well and in a wheel chair. I often wonder would I visit me… the answer is most likely not! So thank you to those that made the effort.
The trust is in place and working well. In summary, last year thanks to all the generous support we were able to purchase:
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