Posts filed under 'als'
Well it’s a year since we came back from China. We haven’t updated till now so as to see how things would work out after the treatment. The improvement during the treatment and for a few months afterwards continued but swallowing and weight losses became worse. We reached a stage by June this year where Shelagh’s weight had dropped down to 41.5Kg., a dangerous level. That same month Shelagh caught pneumonia and ended up in hospital where for the first couple of days had a 50/50 chance of survival. A slow recovery followed during which time feeding was administered through a tube into the tummy via her nose. Ten days later an operation for a ‘PEG’ was done and since early July Shelagh has and is receiving food only through a tube directly into her stomach. Her weight has climbed very slowly up to 47.0Kg. At the same time her breathing has become shallow. We have a Catch 22 situation between increasing weight and strain on the body because of muscle loss. When we get out and about Shelagh is in a wheelchair, not having the strength to wheel herself. We receive assistance from various organisations in the areas of domiciliarycare, home help and equipment to ease her condition. Following a Report from Italy, (last April), of a trial with ALS patients, Shelagh as well as using Riluzole, is also taking small doses of Lithium daily, which the trial claimed, slows down the onset of the disease. We don’t know if any of the various treatments over the last year and a half have slowed things down, and at the same time, obviously don’t know what would have happened had she not taken anything. We have also had tremendous support from family and friends, and we are ever mindful of their care and thoughtfulness. Bye for now.
November 2nd, 2008
11/11/07 Well we’re home again. What a great feeling and what a great welcome. Thanks heaps to Carolyn and David, Connor and Isabelle and (surprise!) Richard and Mum for providing the welcoming committee and to Mike and Pam & Emma for providing the ‘welcome home’ reception with all the goodies. Actually much better than airline food!! I have noticed some small improvements in my condition since the stem cells and we just hope they hold up for the next six months or so. The doctors have told us that it takes 3-6 months for the cells to reach their potential, so we live in hope. We have to let everyone know how fantastic it has been to receive all your emails, blog responses and txt messages. They were all real life-savers. It was quite an isolating experience and your messages from all over the world helped enormously to keep our spirits up. Will update this blog on a monthly basis so everyone can know how the progress maintains. Our love to each and every one of you. Carer 7 16.11.07 Well it has taken a long time to get down and write an update to you all, mainly due to a great deal of meeting up with family and friends and settling back into routine. In addition this last week has been a busy time seeing various specialists for reports and updates on Shelagh’s condition after her treatment. We can report good news on the following: we saw her physio last Monday and with the tests for balance, walking and arm strength, Shelagh is in better condition than when last examined on the 27th Aug., thanks due we think to Willy, her physio in Shenyang. (Good news). On Tues. we saw her swallowing examiner and found that an improvement is evident, is chewing better with bigger amounts of food and more able to cope. (More good news). Same day we saw her dietitian and could report her ability to consume high protein and high energy foods are maintained. (Even more good news). Albeit her continued weight loss is of some concern. We attribute that loss either to low nutrition foods in China or my cooking or both! Shelagh has to lose no more and if possible increase over the next three months. We saw the neurologist on Wed. and his comment was that Shelagh was looking healthy!!, and when tested for reflexes was in as good if not better condition. He is also concerned with her weight loss, but found her in better shape than when last examined. The speech has not dramatically improved, I find it about the same, although some here say they can hear an improvement. So, all in all, it appears that the trip was worthwhile and if things continue to improve and/or maintain it would be in our best interests to start planning for another trip in about 6 months. I’ll close now with a repeat of my thanks to all those who have worked hard over the last month or so to make us better.
November 16th, 2007
This will be the last blog from Shenyang! We are going home day after
tomorrow!! How sweet that word sounds. It has been a bit of an up and down
week, treatments went well, no after effects, and the day after produced a
noticeable improvement in speech. However, this has not maintained, but we
don’t know if it is because we have been so busy and rushing around doing
“last minute†things and I have got very tired, or whether the effect
was not going to last anyway! When I get home and start to relax again,
we’ll see how it goes.
Today I woke with a headache and thought – oh no! Not in the last week,
life couldn’t be that cruel. But, after a really lazy day, with no
acupuncture and no physio, by the evening I felt a bit better. So,
tomorrow, I’ll have to face the javelin thrower for the last time.
Unfortunately, I’ll also have my last massage, and they have been great, and
my last physio, which has improved the strength in my left arm no end.
We had a farewell with the staff tonight. Had to have it today cos all
staff are very, very busy on Fridays, it is “cell day†for many
patients. So we just bought them all a cake each to take home, a couple of
big cakes to cut up and eat at the do and we wrapped all the little souvenir
things we brought with us and put in a basket for them to have a lucky dip.
It all went down very well, and we had the dr in charge of the Neuro Dept
here and the guy who regularly stuck a needle in my back and the floor
doctor all turn up as well. Thank heaven we bought enough cakes! The guy
in charge has told us to keep in touch with him so he can monitor the
progress I make and that I can expect these improvements to continue for
about 6 months. We’ll see. It would be absolutely great if they did!
Fri 2/11
I really would like to say to everyone, how great the staff have been here.
Even with the language difficulties, they have been outstandingly polite,
kind and caring. We have learnt a few Chinese words since we have been here
and Mike is getting quite good. We bought a Mandarin/English phrase book
before we left and it has paid for itself time and again. Mind you, don’t
know when we will use it again!
“Shelagh is being very kind, my Chinese goes from ‘yingtong, yintong,
yintong yiddle, yingtong yiddle lie foe’ to ‘Wingwong, wingwong, wingwong
wiggle, wingwong wiggle my toe’â€
P.S.
We’ll write again when we get home and the WordPress people have issued us
with a new password. Would you believe that they are updating their blog
sites and they have to “close down for about a day†so they say.
Unfortunately, their “day†of closure co-incides with our flight home! I
suppose someone has to be inconvenienced and this time it’s us!!
Carer Report 6
I would like to add my thanks to the above comments from Shelagh.
The past 31 days have been made so much more bearable because of the
fantastic support we have received from all of our Family and Friends who
have sent blogs, txts and emails. These messages have come from all over
the world; from all around the UK, Belgium, South Africa, Ireland, New
Zealand and all around Austrailia. It has been quite overwhelming and has
greatly contributed to our being able to stay positive in the face of
alternative non-action. We thank you all, many many times and most sincerly.
Nedelin, your generousity in lending us your laptop has been a godsend. To
be able to ‘stream’ ABC’s 5AN Matt & Dave while composing blogs and emails
has been one of our greatest joys.
So, Ned our special thanks to you.
Couple of things just sprung to mind.
1. When Shelagh went down for her last jab with all, (yes including Ned),
the grandchildrens photos firmly attached to her bed, the operating doctor
asked her which of them were sisters and were born exactly 4 years apart. He
had remembered from when Willows pic went with her and from when the twins
pics did aweek or two apart.
2. At the end of the tea party the Head Nurse came forward and gave Shelagh a
big hug while saying goodbye. (aparently an unusual action)
3.The Doctor who did the assessment on Shelagh’s first day called in Thurs
to do the final assessment so as to compare results,went to the head of her
bed and pointed to one of the inspirational notes she had bluetacked to the
wall and pointed out the one she got from Pat, which says “believeâ€.
Once again a big thank you to all family, friends, Beike reps and the
Hospital staff.
Please feel free to add comments, its not over yet.
Love, big hugs and best wishes to all
Mike (oh! and Shelagh)
November 6th, 2007
Hi everyone, I’m starting this on Monday a.m. And no doubt Mike will finish off tonight while I’m immobile! It’s the last jab today and I must admit I’m not looking forward to it. But if it provides some benefit, then jab away! It’s been a really strange kind of week. Jab last Monday was a bit different and they had to have two goes at it as they couldn’t get any spinal fluid out the first time. You have to withdraw the same amount as you are putting in, cos there’s only a limited space in there!!. Consequently, my back was sore for a few days. During that week, we did some shopping, arranged a sightseeing venture for Sunday (yesterday) and continued with the treatments. On Thursday, the nursing staff swept in and tidied the room and told us to keep it tidy as there was to be an inspection by the military (this is a military hospital) and they wanted everything up to scratch. Not a problem. The BIG problem was when they switched off access to the internet because the military said that we “were not allowed to have itâ€. It has been a constant frustration ever since. And not only to us. There are people here who still work and have to keep in contact with their businesses at home, and that has arbitrarily been taken away from them. The only concession has been by Tony, the Beike rep who lets the patients, when possible, use the office computer to send and receive but of course this is only at night after the mililtary have gone home and before he goes home. You can imagine the level of frustration amongst us all. Especially for me, who cannot talk on the phone, and whose only method of communication is by email. Still, we only have six days to go now and are looking at packing up and coming home. So it is no longer a case of “well – maybe next week….â€. We’ll be HOME by then!!!
Yesterday we went out to see the “Strange Slopeâ€, which lies about 30kms outside the city. It is an unbelievable thing – it is a slope, only about 90mtres long which defies gravity. They give you bikes to ride so you get the sensation, and going downhill, you have to pedal like mad and coming up, take you feet off the pedals and you sail up as if you were going down!! Really, really weird. The only thing was it was FREEZING and I mean freezing. We couldn’t stop shivering, so the day was not as happy as it could have been. Last night the temp was -6 and we had snow. It was still here this morning when we woke. Adelaide weather seems very attractive to us right now.
Carer 5 report 29/10
We are back on air after USA and Aussie, (with Pommie training), reps tackled certain powers that be and succeeded in obtaining a new IP. For that we are grateful and appreciative.
Well S. has had her last jab and is having the long rest. Things went well this time only on the table for 20 mins.
We hope to blog again later this week with another update. And will include a summary of effects after treatments.
Meantime we can say that the positives have been an improvement in swallowing, more force and direction of toothpaste removal and a big increase in strength of left arm and grip. We now wait for a period of about six months to see if these pluses are maintained.
I will record here our thanks to the nurses, cleaners, doctors and Beike staff who have all given of their best to a whole lot of patients and carers with individual and some common problems. All of them have listened and acted in our best interests, and have made life here as comfortable as cicumstances allow: (Syntax on that bit of writing not the best!!), but is sincerely meant.
Keep on blogging it does help tremendously.
Bye for now
October 29th, 2007
Carers report 4 (4 in 1 to go) 22/10
Shelagh is into three hours of the recommended 4/6 hours rest, after the fourth treatment. Feeling ok and this time no noticeable tingling sensation in legs or body. It took a little longer this time, approx 30 mins, with the anesthetic first and then two injections. We have learned that it can take up to 6 months for any real difference to appear. Apart from when tired her voice has maintained the slight improvement which has occurred over the last two weeks. Her swallowing is as previously noted and spitting force somewhat sustained. Shelagh’s strength in the previously weak left arm has greatly improved with the daily physio treatment. The grip reading, as we call it, has gone from 104 to 145 to 167, over three weeks, and, when compared to the right hand grip, is in fact stronger.
We farewelled Dale today, he is off back to the USA, and tomorrow we say goodbye to Neil,his wife Rosemary and her sister Peg who are also off to the States. New people came in over the last few days, Mary and her father, Manuel, from Spain, and two from Malaysia, Lillie and husband Wong. Having been charged by the great organiser Roz (who with husband, Phil, left last Thursday) to redistribute all the goodies they and Lorn with son and daughter (who also left last Thursday) left with us to give any newcomers, we had the opportunity to meet the new people and make them feel a little better by passing the goodies on. Induction Hotplates, Microwaves cleaning cloths and agents and a couple of washing up bowls, to mention a few.
Yesterday we spent a few hours at the Shenyang Zoo. It is about 30 odd km out of town and divided into two halves and is a cross between a small Western Plains and a small San Diego. You travel by bus for the first half and walk the second..That was quite a hike. They have lots of lions and tigers and bears and a few leopards. There are also emu, peacock, camel, deer, wildebeest, chickens, geese, swans, rabbits, pandas, lesser pandas and elephants and a white rhino. A group of 12 patients and carers, from our floor, enjoyed the outing.
Some of you are still having difficulty getting onto this blog so I will copy and paste by e-mail to those I know of who are struggling.
Looking forward to your comments, bye for now, will be in touch!
ps. been off air AGAIN since Sunday night – unable to post this earlier. Still relevant tho! Thanks for all your responses – it’s lovely to read them.
October 24th, 2007
Well, looks like we’re back on the air again! What a frustrating week this has been with no blog access. God knows what they were maintaining – I’m sure NASA could have maintained the whole of the space programme in that time! So back to doings in Shenyang. I have now had three lots of cells, two lumbar and one i.v.. I must say, I felt some improvement after both sets of lumbar and very little to none after the i.v. Don’t know if that is significant. However, am now able to eat scrambled eggs and chips and the local version of chicken nuggets and chips. All I may say cooked by Mike on a single induction hot-plate and a microwave! When we return, if you know of anyone who is looking for a chef…….? We are now the only Ausssies left in the hospital. Roz & Phil, the other couple from the Gold Coast, left on Thursday together with the Canadians. So on Tuesday night we had a farewell party for them. It was held on the Tuesday because people had stem cells programmed for Wednesday and some people would have missed out. It was a good chance to get to meet everyone. Everyone brought a plate and we had lots of food and soft drink and one half-bottle of red wine, which was shared by Tony, Phil and Mike (only very small glasses!). Following the eat-up, we had a “tencent†auction, where Roz & Lorn had gathered all the stuff they were leaving behind and auctioned it off to the other patients. The profits to be given to the hospital to buy things for the wards. Boy could they do with it too! You would’nt believe that we only have hot water delivered thru the tap between 8.30 and 9.30 at night!! All other times if you want to do washing up or something, you have to take a bowl and walk down the corridor to the laundry and fill it up with hot from a machine and bring it back to the room. We’ve been out a few times to look at the local area and it certainly is not tourist oriented. We cause quite a stir when we are walking down a street, (17,432 stares in 3 km). They are not used to foreigners here. But, today is Friday and we are over the hump now! We have been away from home longer than we have to go to return. Whoopeeeeeee!!!!!!!
All for now -will write again after the weekend. Many, many thanks for your messages, you’ve no idea how they cheer us up.
October 19th, 2007
Carer ps am 13th Oct Report 3
Would you believe our blog web site has been under maintainance for the last 12+ hours!
Couldn’t publish last nights blog. Will try this am.
So adding this ps.
The morning after Shelagh’s 1st S/cell injection her voice improved, albeit a little, which was a good sign. That effect didn’t last for more than a few hours that day but it didn’t get worse, and has been about the same since.
This morning, after her 2nd S/cell treatment yesterday, an improvement again is noticeable, which perhaps will last longer. Also her spitting force has improved.
We have no acupunture this AM so after massage we go to the Wholesale Market to look around (ten minutes by taxi at about $2.00 each way) and then back for physio.
Sunday is a day off apart from acupunt. am., as the Prof. is away lecturing, then free to go sightseeing.
It is now night time, we have been trying to publish this all day but no luck so far. Shelagh’s voice has maintained its improvement all day and her swallowing she says shows some improvement also. She is able to eat some chopped fruit now instead of mashed fruit.
Pss. For those who read and haven’t yet blogged, have a go, it does us both a lot of good.
Mike
October 18th, 2007
Carers Report 2 12th Oct
While Shelagh is immobile for the next 4 hours I’ll attempt to write up todays activities.
We started this am with acupuncture at 0830. The process is now less painful ‘cos after my ‘chat’ with the doctor a couple of days ago, with the help of an interpreter, the voltages supplied to the needles is at a bearable level. In fact the doctor (Professor GE Shu-han) and I get on heaps better, so much so that he took me to his Library/Office and there presented me with one of his many publications (63) . He is number two in China and is highly regarded here and over the world for the work he has been doing in acupuncture – moxibustion. We discovered that we were born in the same year and have been practicing our professions for 46 years, his in traditional and western medicine and mine being married to the same woman, so we were equal in life’s experiences. His excitement increased to such an extent that he insisted in autographing his book (in Chinese) for me and also gave me a copy of his ‘Introduction to Celebrated Acupuncturist’ profile(in English).
All that took about 40 minutes so we then went back upstairs to have a much needed coffee.
The next session was at 1020 and involved 20 mins. of massage with Matt (!!! some names are hard to pronounce so we westernise to something close) and today he was a lot more gentle because the previous day’s session left Shelagh a little sore. There is a benifit with this therapy and today Shelagh felt a lot better.
We then rested up to lunch time Lunch today was a take away pizza, ordered in and delivered at a cost the equiv. of $7.00 plus $3.00 delivery. Normally the del. (taxi) charge is about 50 cents – but we were the only ones having a pizza and all the other food came from a different direction. The pizza was a bit of a mystery in respect to the toppings. I did regonise some cheese and some ham and Shelagh thought she saw some shrimps but a couple of other bits we couldn’t put a name to except the thumping great fried egg placed artistically smack bang in the middle. We took a photo.
Then at 1415 we went to physio. which takes half an hour and found that Shelagh’s strength in her left arm and hand is getting better each time, a good sign. The physio’s name is Willy and is young but very good , he is attentive and gentle
Then back to room and await the call to go down, with bed, to the 8th floor for S/cells injection. The call came at 1640, so we trundled off with the bed, (with Shelagh driving from the front), down to the op. theatre. She went in at 1653 and came out at 1709. The same awareness of the anesthetic been administered and a similar tingling feeling in one leg with the S/cell injection, plus what she described as a mini ‘hot flush’ travelling down from the neck to the toes. Its now 4 hours since then and she has rested, as ordered by the experts, so as to reduce the risk of a bad headache coming on by moving too soon after the treatment.
I did a lot of videoing today for the first time. The acupucture session, the massage session, the physio session the trundle down to the op. Theatre (not allowed inside) and back. Plus some of the inside of the Hosp and some of the views outside through windows.
Shenyang hosts the Olympic Soccer games next year (dont know about the finals though), and they are already gearing up for the event.
The above routine is typical of the days here but for the S/cell treatment which is about every five days, plus of course on other days between sessions we can do a bit of shopping!! We plan to a bit of sight seeing soon as well.
I’ll close by saying a big thank you to all those great messages you have been sending. They are greatly appreciated and we look forward to them very much. Bye for now…………. ..
October 18th, 2007
hi all
today has been a good one. acupunct this morn then massage then lunch, take away macaroni curry plus spagetti bolog. and a cake each. then physio. Shelagh was pleased to find her grip of left hand has improved a lot since physio started. then shopping and back to Hosp. for tea and red wine (Chile) cab sav very good at $6 compared to Aussie wine at $20+. Managed to get on line very quickly so rushing this thruogh while can. Tommorow we are promised fast and reliable internet service so may be able to update more often. Tommorrow is a very busy day with the usual dose of acu, mas, phys and 2nd injection of s/cells. all the nurses and doctors are courteous and helpful and the Beike rep Tony one of the best. Ive done a lot of Xwords to pass the time during therepy sessions.
October 11th, 2007
Well, it’s finally happened! Boy, what a day yesterday. Again didn’t go to acupuncture, but did go to massage, where they said we were late! So a discussion ensued – & it turned out that all the times for everyone had been changed baecause the holiday was over and staff were all back at work, but no one had thought to inform the patients! That was sorted and we returned to the room to prepare our first lunch with microwave and hot-plate. Mixed results. We had curried prawns and rice. Not bad but certainly not up to Ruby Raja standard. After lunch went to physio and then on return, the
October 9th, 2007
Previous Posts
