There were many other things, but these were the most debilitating.<\/p>\n\n\n\n
She had adopted coping mechanisms throughout her life. For example she explained that her photophobia at school was so painful that she routinely chewed on Asprin. She said she treated them like lollies. I’m NOT suggesting you try that.<\/p>\n\n\n\n
More to Come<\/h2>\n\n\n\n
I\u2019m pretty sure I will think of some more coping strategies Trenna and I tried. As I do I will do another post and link it in here.<\/p>\n\n\n\n
It is also my intention to write specific posts to expand on and explain some of the strategies. When I do I will link those to the list.<\/p>\n\n\n\n
I hope you will find the list useful in some way. If you have tried some of these strategies in the past, or as a result of reading them here, please provide some feedback below.<\/p>\n\n\n\n
Things Trenna and I Tried, That Worked<\/h2>\n\n\n\n – in no particular order<\/h2>\n\n\n\nGreen pen sheets<\/strong><\/h3>\n\n\n\nThese were A4 sized white paper on which I wrote step by step instructions on how to do various tasks on Trenna’s laptop, or our scanner\/printer. I used an Artline 210 Medium 0.6 marker. Steps were numbered and usually spanned several numbered pages, stapled together.
![\"Paper](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_29941-e1645193547314.jpg?resize=580%2C773&ssl=1\")
<\/p>\n\n\n\n
Craft group<\/strong><\/h3>\n\n\n\nTrenna was delighted when she was asked to join a group of women from the neighbourhood for a weekly craft group. (One of the husbands called it “Stich and Bitch” which Trenna thought was pretty funny). Participating in a group like that gave Trenna something to look forward to, a sense of achievement (she knitted and crocheted several things) and it made her feel a bit more normal.<\/p>\n\n\n\n
Pacing<\/strong><\/h3>\n\n\n\nJust being conscious of what she was doing, including its likely effect on her body, including the cumulative effect of doing stuff.<\/p>\n\n\n\n
Doctors notes<\/strong><\/h3>\n\n\n\nBefore every visit to a doctor or specialist Trenna would write down anything she had to report and any questions she had. After every visit she would write notes about what was said.
![\"Hand](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_29961-rotated.jpg?resize=580%2C773&ssl=1\")
Hand written notes about a cardiologist appointment. This one from 2006. Once Trenna got an iPad all the doctors notes were done on tha<\/em>t.<\/p>\n\n\n\nA doctor visit companion<\/strong><\/h3>\n\n\n\nExcept for a brief, experimental period Trenna always took someone (almost always me) with her to doctor appointments. One of the benefits were that it helped with the notes afterwards, reducing the chance of missing something, and it ensured I was up to speed with her care needs.<\/p>\n\n\n\n
Sheepskin on the seat and seatbelt<\/strong><\/h3>\n\n\n\nMarfans can have boney bottoms! On cars that didn’t have sheepskin seat covers she placed a piece of natural, thick, sheepskin under her bottom. It was comfortable (I know, I’ve inherited the sheepskin), cool in summer and warm in winter. She also had a rectangle of sheepskin, the two long edges joined by Velcro that she put on the sash part of the seatbelt to protect her boney chest.
![\"Sheepskin](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/03\/IMG_31131.jpg?resize=580%2C1032&ssl=1\")
Some sheepskin on the car seat and some on the seatbelt for added protection.<\/em><\/p>\n\n\n\nInflatable cushion<\/strong><\/h3>\n\n\n\nThis was great for sitting on any unpadded seat – inside or outside. We always carried it with us – weighed nothing and was ready in seconds.
![\"inflatable](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_31161-e1646642871137.jpg?resize=580%2C400&ssl=1\")
<\/p>\n\n\n\n
Singing<\/strong><\/h3>\n\n\n\nTrenna, by her own (correct!) admission was a terrible singer. BUT, she enjoyed it. In her last year she was able to persuade her visiting speech therapist – Callum, who is a musician – to try singing as a therapy. We never got around to measuring it, but my assessment is that her voice projection improved considerably and she was much happier, frequently practicing between therapy sessions. As an added bonus Trenna actually got quite good at singing! Thanks Callum.<\/p>\n\n\n\n
Speech therapist, occupational therapist, physiotherapist<\/strong><\/h3>\n\n\n\nGetting supports through the Australian National Disability Insurance Scheme (NDIS) was really problematic and stressful to organise, but for the last couple of years of her life Trenna was able to access a range of therapists who came to our house. At times it was exhausting, but they all brought some real benefits to Trenna. There were a number of them, but thank you in particular to Callum, Ruth, Kathryn and Brendan.<\/p>\n\n\n\n
Munro shoes<\/strong><\/h2>\n\n\n\nLike many Marfans Trenna had long thin feet, with no real height to them. One foot was a quadruple A fitting and the other a triple A. It was a nightmare trying to find shoes that fitted – she very rarely did. One of the better brands for fit was Munro America. The down side was that we had to order them from the USA and they cost hundreds of dollars more than a “normal” shoe in Australia. We also had to wait for weeks to receive them, and more than half the purchases had to be returned because they weren’t a good enough fit. That leads me to …..<\/p>\n\n\n\n
PayPal Refunded Returns<\/strong><\/h3>\n\n\n\nWhat a great scheme that is. If you are registered for this and pay with PayPal they will refund the cost of returning goods (like shoes) up to $45-00 eight times a year. Mind you, it costs MORE than $45 to send a pair of shoes from Australia to the US.<\/p>\n\n\n\n
Search and destroy<\/strong><\/h3>\n\n\n\nI have a tendency to accumulate junk mail, newspapers, pamphlets – all manner of ephemeral reading matter. Trenna designated that I should do 10 minutes every day of “search and destroy”. Basically look at the stuff I’ve picked up, read it, and if I don’t need it, throw it in the recycling. It worked well, and I’ve recently reintroduced it into my life.<\/p>\n\n\n\n
Training doctors<\/strong><\/h3>\n\n\n\nAlmost every time Trenna went to hospital she would be asked if a student or trainee doctor could take her history, or ask her questions, or examine her, all as part of their training. Trenna always agreed and was extremely thorough and honest with them. It took quite a bit out of her at times when she was at her weakest. She knew she could refuse, but she felt she was helping others, the doctors and their future patients. And she felt that a lot of the medical profession had an inadequate understanding of Marfan Syndrome, and she wanted to correct that – and she felt better for doing it.<\/p>\n\n\n\n
Volunteer work where they don’t know you<\/strong><\/h3>\n\n\n\nThere was a period of several years when Trenna volunteered once a week helping migrants and refugees to Australia to learn English. She loved the work and she loved helping others develop a really important skill. But she also liked mixing with the other volunteers, and with them she only shared a little of her past and her disabilities. Although the half day of activities did wear her out she would be delighted that for a while, to those around her she had seemed quite \u201cnormal\u201d.
![\"Thank](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_31171-e1646642636101.jpg?resize=580%2C392&ssl=1\")
A thank you card from the students of one of the classes. Most had a very limited ability with English.<\/em><\/p>\n\n\n\nRecord keeping, diaries etc to keep distracted<\/strong><\/h2>\n\n\n\nThere are many reasons why Trenna kept diaries and meticulous records of all sorts. Just one of those, and it probably wasn\u2019t the main one, was that it kept her distracted. When she was concentrating on what she was writing she wasn\u2019t thinking (as much) of her pain or the fairly crumby set of cards she had been dealt in life.<\/p>\n\n\n\n
Horse riding<\/strong><\/h2>\n\n\n\nIn February 2020 Trenna did one session of horse riding. By this stage she was on oxygen full time and to leave the home she was pushed in a wheelchair. Despite this, Ruth the OT and the woman from the Claremont Therapeutic Riding Centre<\/a> got Trenna onto a horse, with the instructor sitting behind her. Trenna thought it was fabulous, she absolutely loved it. Almost immediately COVID came and she never had another opportunity to do it. She loved the experience, she loved meeting the horses, and she loved that it demonstrated that things that seem almost impossible to do were possible when people worked together. Thanks Ruth.
![\"\"](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/Tren-on-a-horse-Feb-2020-e1646645360572.jpg?resize=580%2C436&ssl=1\")
Trenna on the horse. The instructor is wearing a back pack containing Trenna’s oxygen supply, because by 2020 Trenna was on oxygen full time.<\/em><\/p>\n\n\n\nWater physiotherapy<\/strong><\/h3>\n\n\n\nIn her last two summers a physiotherapist had sessions with Trenna in our home swimming pool. They were a good, relatively low impact way for her to exercise. Thanks Brendan.<\/p>\n\n\n\n
Home INR machine<\/strong><\/h3>\n\n\n\nFor anyone who is taking warfarin and needs to monitor their INR these machines are well worth the money. It would be nicer if the test strips were a bit cheaper though, Mr Hoffmann-La Roche.
![\"INR](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_12981.jpg?resize=580%2C773&ssl=1\")
<\/p>\n\n\n\n
Custom made wheelchair<\/strong><\/h3>\n\n\n\nThe NDIS paid for a wheelchair customised to suit Trenna\u2019s size, shape and needs. Even taking into account how it would fit in our car. Trenna hated that her heart and lung failure had got to the point where she needed a wheelchair, but she also told me she loved her wheelchair, and it did make some outings possible that otherwise wouldn\u2019t have been.<\/p>\n\n\n\n
Home modifications<\/strong><\/h3>\n\n\n\nWe started the process to get the NDIS to pay for some home modifications. They certainly had potential to assist us, but as it turned out, the very long winded process to get the approval wasn\u2019t completed before Trenna died. I guess the lesson is if it is something you might need, start as soon as possible.<\/p>\n\n\n\n
iPads<\/strong><\/h3>\n\n\n\nTrenna got her first iPad in 2011. It was not without its frustrations, and there were many apps that were too hard to use, but overall she found it an invaluable tool, especially for writing.<\/p>\n\n\n\n
Still participating in decision making and where possible physical things<\/strong><\/h3>\n\n\n\nThroughout our life together Trenna and I strived for equal decision making and shared physical activities in line with our abilities.<\/p>\n\n\n\n
Cannabis and diazepam to help sleeping<\/strong><\/h3>\n\n\n\nTrenna tried various doses of prescribed cannabis oil to try to get pain relief. It just didn\u2019t work for her. However, 0.5 ml of cannabis oil and a 5 mg diazepam tablet about 45 minutes before bed definitely helped her to sleep.
![\"Medicinal](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_29971-rotated.jpg?resize=580%2C773&ssl=1\")
<\/p>\n\n\n\n
Having an exit plan made her feel a lot better<\/strong><\/h3>\n\n\n\nTrenna had a plan to end her life if she felt it was necessary. Once she had that plan in place it reduced a lot of uncertainty and she described being calmer and at peace. (I may write more on this at a later point, but not now.) As it turned out, she didn’t need to use that plan.<\/p>\n\n\n\n
Telling people NO<\/strong><\/h3>\n\n\n\nShe wasn\u2019t particularly good at this but she knew the power of sometimes saying \u201cNO\u201d to invitations, visits, or other things that just felt like an impost.<\/p>\n\n\n\n
Coloured pipe cleaners<\/strong><\/h3>\n\n\n\nIt only worked when her eyesight was bad, and not when it was really, really bad. But bright, fluorescent coloured pipe cleaners wrapped around things helped her to see them. Our office chair had them on the protruding legs, to help see them (so as not to kick them) and cords for the camera and iPad were stored using colour coded pipe cleaners. Pipe cleaners ended up on lots of different things.
![\"camera](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/03\/IMG_31121-e1646645958916.jpg?resize=580%2C497&ssl=1\")
Bright pipe cleaners were used a lot. In this case, orange meant accessories for her camera. The orange on the bag made it easier to find it in a dark drawer, and the orange on the cord, held it together plus made it easier to find inside the bag.<\/em><\/p>\n\n\n\nPOTENTIALY having clothes made for her<\/strong><\/h3>\n\n\n\nTrenna had a LOT of trouble finding clothes – I think I\u2019ll do a separate post on the issue – but she was hopeful that getting clothes made for her, although very expensive, would work for her. As it turned out, it never did, but she and I thought it had potential.<\/p>\n\n\n\n
Only use natural fabrics – but that did limit choice<\/strong><\/h3>\n\n\n\nShe was a huge believer that everyone would feel better in garments made with natural fibre, such as cotton, as compared to human made fabrics. I agree with her. However, this made it even harder to find suitable clothes.<\/p>\n\n\n\n
Take photos<\/strong><\/h3>\n\n\n\nOften if we were out Trenna would get me to take a photo of something we were looking at. Once we were home she would get me to put it on the iPad or TV , and blow it up so she could see all the detail that she would otherwise miss.<\/p>\n\n\n\n
And organise photos carefully so you can find them<\/strong><\/h3>\n\n\n\nTrenna used her laptop computer, and later her iPads to organise her photos by year and in some cases topics. She spent many hours on this, which she found absorbing. Trenna had a fabulous memory for dates so it also meant that she could find almost any photo extremely quickly. Her favourite app for photos was the My Pics app on iPad.
![\"iPad](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/photos-screenshot.jpg?resize=580%2C435&ssl=1\")
<\/p>\n\n\n\n
Home hairdresser to wash hair<\/strong><\/h3>\n\n\n\nAs her heart and lung failure got worse it became increasingly difficult, indeed dangerous, for Trenna to wash her hair. For the last few months Dwyane<\/a> the mobile hairdresser visited and washed her hair once a week. The NDIS covered this expense.<\/p>\n\n\n\nHot and cold fan<\/strong><\/h3>\n\n\n\nOur house has ducted heating and cooling throughout. However using our fan on heating mode in the bathroom really helped the comfort level after a shower. Importantly, when having trouble breathing, cool air blown into your face can provide a lot of relief.
![\"An](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_29981-rotated.jpg?resize=580%2C773&ssl=1\")
<\/p>\n\n\n\n
When young, she lay on her stomach<\/strong><\/h3>\n\n\n\nIf you have a scoliosis (as Trenna did) or other skeletal issues do this at your own risk! Up to when Trenna was about 40 years old, when her back was giving her a lot of trouble she would lie on the bed, with no pillow, on her stomach and not move for about an hour. She told me that it was initially very painful, but did help. She didn’t do it in later years. Everyone’s body is different so be cautious if you want to try this.<\/p>\n\n\n\n
Recce-vite<\/strong><\/h3>\n\n\n\nI have written a brief separate post on this topic<\/a>. If you tend to stay home a lot because of ill health or disability the recce-vite is designed to give you a bit of a lift without being too taxing on the body. A short, 2 hour maximum trip to a specific location to do a specific thing. It would work for busy able bodied people too, including couples who don’t find the time to go out together much.<\/p>\n\n\n\nBlanket raiser<\/strong><\/h3>\n\n\n\nThese are relatively inexpensive (you could even make one yourself) but keep the blankets off your feet. Good if you need to sleep on your back or have foot injuries or pressure wounds.
![\"Blanket](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_30041.jpg?resize=580%2C435&ssl=1\")
<\/p>\n\n\n\n
Apple Watch<\/strong><\/h3>\n\n\n\nIt took a lot of persuading but the NDIS did fund Trenna to get an Apple Watch. Mind you her iPhone 6+ was incompatible, so we had to buy a new iPhone which wasn’t funded. It meant that she could ring me by asking Siri, she could get the watch to “ping” her iPhone when she couldn’t see it, and it had “falls detection” which would have called me and emergency services if she fell and didn’t get up. It could also speak the time.<\/p>\n\n\n\n
Trip to Japan to try a mid length trip<\/strong><\/h3>\n\n\n\nWe were invited to our niece’s wedding in The Netherlands. That’s about 24 hours of flying from Perth. Trenna thought that because of her health she probably couldn’t do that distance anymore. We decided to go on a holiday to Japan, about a 9 hour flight. Great holiday, but it was clear that a trip to Europe was no longer a possibility.<\/p>\n\n\n\n
Exercises to reduce pain –<\/strong> until she couldn’t<\/strong><\/h3>\n\n\n\nWhen I first got together with Trenna in 1988 she was very skeptical that exercise could be used to reduce pain – it seems a bit counter intuitive. A few years later she started doing a regular, moderate exercise session, each morning. Mainly floor exercises and some very light hand weights, I think they were about 0.5kg each. She is certain it helped a great deal. For the last several years of her life she couldn’t maintain that, but she did whatever exercise she could. In due course I will publish some of the exercises Trenna did.<\/p>\n\n\n\n
Not lifting anything weighing more than 2 kg (about 4.4 pounds)<\/strong><\/h3>\n\n\n\nThat was the advice from one medical professional and Trenna followed it (usually). She had real trouble lifting anything that heavy anyway.<\/p>\n\n\n\n
Pain killers (though it isn’t all good news)<\/strong><\/h3>\n\n\n\nAnyone who uses a lot of pain killers knows what a two-edged sword they are. They have a big effect on your metabolism and they can cloud your thinking (but pain does that too). Obviously this is something you need to sort out with your doctor or pain specialist but for those interested, for a good part of her later life Trenna did the following. I would wake her in the morning and she would take 2 Panadeine Forte and a 5 mg Diazepam (as a muscle relaxant) she would then sit on the side of the bed and we would talk or I would read her news stories (which usually put her back to sleep!) until she was ready to get up – typically 30 or 40 minutes. At 2pm she would take more 2 Panadeine Forte. Then about 45 minutes before bed she would take 2 Panadeine Fort and 1 Diazepam. For the last couple of years she took a Lyrica as well. Also 0.5ml of cannabis oil to help her sleep. Very occasionally if she had excess pain during the day she would take 2 more Panadeine Forte. Most of the time she just grinned and beared it, not wanting her thinking to get any fuzzier than it already was. Also, Trenna had a Norspan 10 patch which she changed once a week.<\/p>\n\n\n\n
Experiment, but keep good notes<\/strong><\/h3>\n\n\n\nTrenna and I found many coping strategies by just trying stuff out. For that to be effective though you need to make a record of what your doing and what the effect is. And of course, ONLY CHANGE ONE THING AT A TIME!<\/p>\n\n\n\n
Write down your pills as you take them<\/strong><\/h3>\n\n\n\nIf you are taking lots of medication you are probably using a Webster-Pak, a plastic container with compartments marketed with the day and time, or some other similar method that allows you to look back to confirm you have taken your morning pills, or whatever. But we found that if there was ad hoc medication taken, it was a good idea to write it down STRAIGHT AWAY.<\/p>\n\n\n\n
Desk rider<\/strong><\/h3>\n\n\n\nAnother piece of equipment funded by the NDIS. They allowed it because it was during COVID lockdown and all gyms were closed. There was no way Trenna could sit on a stationary or real bike’s saddle, or support her upper body on the handle bars. The desk rider, recommended by Trenna’s physiotherapist, Brendan, allowed her to sit in a lounge chair and pedal. This was another thing that came very late in Trenna’s life so she could only ride for a couple of minutes before taking a break and repeating the exercise.
![\"a](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_31201-e1646798336562.jpg?resize=580%2C748&ssl=1\")
<\/p>\n\n\n\n
Don’t forget your friends, and don’t forget it can be hard for them<\/strong><\/h3>\n\n\n\nWhen you are battling chronic illness, and even life itself, it is easy to deprioritise friends and family. But they can be really useful as a distraction, or hopefully, as a real help. It is important to note though, depending on circumstances, a very sick person can be a stark reminder of the frailty of us all. I haven’t got any particular advice on cultivating your friends when everything is so hard, but, I do think it is worth trying. <\/p>\n\n\n\n
And Some That Didn’t<\/h2>\n\n\n\nTouch screen buttons and audiobooks<\/strong><\/h3>\n\n\n\nI talk a bit about touch screens in my post about our ill fated trip to Wellington<\/a>. You can’t feel the buttons so it’s hard to find them if you can’t see well. Lots of audiobook readers are MUCH easier to use if you can see! Tren got through at least one audio book – she was very motivated to “read” Life<\/em>, by Keith Richards. <\/p>\n\n\n\nBadly designed remote controls<\/strong><\/h3>\n\n\n\nTiny buttons, with tiny writing on them, and little colour differentiation really were murder. Having said that, Trenna’s main evening activity was to “slouch on the couch” as she called it, and watch TV through our PVR. She was REALLY expert at using those two remotes. <\/p>\n\n\n\n
Too many doctors when she was chronically ill<\/strong><\/h3>\n\n\n\nThere gets a point when you are chronically ill, with lots of comorbidities, when lots of medical assistance is frankly, too much. Trenna had lots and lots of specialists, and I thank them all because they all tried to do the right thing. But when you are already weak, and their interventions may only make small improvements (at best), it makes sense to reduce the number of medical interventions.
![\"ipad](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/IMG_16491-e1645260054973.jpg?resize=580%2C277&ssl=1\")
A snippet from Trenna’s comprehensive medical notes. This one is recording the outcome from a specialist visit.<\/em> He had been trying hard to find things to assist Trenna, but wasn’t having a lot of success as she was so ill.<\/em><\/p>\n\n\n\nBusiness class to NZ<\/strong><\/h3>\n\n\n\nOnce we chose to fly business class hoping it was better for Trenna. The extra room probably did help but she couldn’t get the full benefit of the seat and the entertainment facilities. Read the full story here<\/a>.
![\"Business](\"https:\/\/i0.wp.com\/trennamahney.com\/wp-content\/uploads\/2022\/02\/Kiora-Greg.jpg?resize=580%2C327&ssl=1\")
Find the start button on this when you are blind.<\/em><\/p>\n\n\n\nPain killers<\/strong><\/h3>\n\n\n\n
Green pen sheets<\/strong><\/h3>\n\n\n\nThese were A4 sized white paper on which I wrote step by step instructions on how to do various tasks on Trenna’s laptop, or our scanner\/printer. I used an Artline 210 Medium 0.6 marker. Steps were numbered and usually spanned several numbered pages, stapled together.
<\/p>\n\n\n\n
Craft group<\/strong><\/h3>\n\n\n\nTrenna was delighted when she was asked to join a group of women from the neighbourhood for a weekly craft group. (One of the husbands called it “Stich and Bitch” which Trenna thought was pretty funny). Participating in a group like that gave Trenna something to look forward to, a sense of achievement (she knitted and crocheted several things) and it made her feel a bit more normal.<\/p>\n\n\n\n
Pacing<\/strong><\/h3>\n\n\n\nJust being conscious of what she was doing, including its likely effect on her body, including the cumulative effect of doing stuff.<\/p>\n\n\n\n
Doctors notes<\/strong><\/h3>\n\n\n\nBefore every visit to a doctor or specialist Trenna would write down anything she had to report and any questions she had. After every visit she would write notes about what was said.
Hand written notes about a cardiologist appointment. This one from 2006. Once Trenna got an iPad all the doctors notes were done on tha<\/em>t.<\/p>\n\n\n\nA doctor visit companion<\/strong><\/h3>\n\n\n\nExcept for a brief, experimental period Trenna always took someone (almost always me) with her to doctor appointments. One of the benefits were that it helped with the notes afterwards, reducing the chance of missing something, and it ensured I was up to speed with her care needs.<\/p>\n\n\n\n
Sheepskin on the seat and seatbelt<\/strong><\/h3>\n\n\n\nMarfans can have boney bottoms! On cars that didn’t have sheepskin seat covers she placed a piece of natural, thick, sheepskin under her bottom. It was comfortable (I know, I’ve inherited the sheepskin), cool in summer and warm in winter. She also had a rectangle of sheepskin, the two long edges joined by Velcro that she put on the sash part of the seatbelt to protect her boney chest.
Some sheepskin on the car seat and some on the seatbelt for added protection.<\/em><\/p>\n\n\n\nInflatable cushion<\/strong><\/h3>\n\n\n\nThis was great for sitting on any unpadded seat – inside or outside. We always carried it with us – weighed nothing and was ready in seconds.
<\/p>\n\n\n\n
Singing<\/strong><\/h3>\n\n\n\nTrenna, by her own (correct!) admission was a terrible singer. BUT, she enjoyed it. In her last year she was able to persuade her visiting speech therapist – Callum, who is a musician – to try singing as a therapy. We never got around to measuring it, but my assessment is that her voice projection improved considerably and she was much happier, frequently practicing between therapy sessions. As an added bonus Trenna actually got quite good at singing! Thanks Callum.<\/p>\n\n\n\n
Speech therapist, occupational therapist, physiotherapist<\/strong><\/h3>\n\n\n\nGetting supports through the Australian National Disability Insurance Scheme (NDIS) was really problematic and stressful to organise, but for the last couple of years of her life Trenna was able to access a range of therapists who came to our house. At times it was exhausting, but they all brought some real benefits to Trenna. There were a number of them, but thank you in particular to Callum, Ruth, Kathryn and Brendan.<\/p>\n\n\n\n
Munro shoes<\/strong><\/h2>\n\n\n\nLike many Marfans Trenna had long thin feet, with no real height to them. One foot was a quadruple A fitting and the other a triple A. It was a nightmare trying to find shoes that fitted – she very rarely did. One of the better brands for fit was Munro America. The down side was that we had to order them from the USA and they cost hundreds of dollars more than a “normal” shoe in Australia. We also had to wait for weeks to receive them, and more than half the purchases had to be returned because they weren’t a good enough fit. That leads me to …..<\/p>\n\n\n\n
PayPal Refunded Returns<\/strong><\/h3>\n\n\n\nWhat a great scheme that is. If you are registered for this and pay with PayPal they will refund the cost of returning goods (like shoes) up to $45-00 eight times a year. Mind you, it costs MORE than $45 to send a pair of shoes from Australia to the US.<\/p>\n\n\n\n
Search and destroy<\/strong><\/h3>\n\n\n\nI have a tendency to accumulate junk mail, newspapers, pamphlets – all manner of ephemeral reading matter. Trenna designated that I should do 10 minutes every day of “search and destroy”. Basically look at the stuff I’ve picked up, read it, and if I don’t need it, throw it in the recycling. It worked well, and I’ve recently reintroduced it into my life.<\/p>\n\n\n\n
Training doctors<\/strong><\/h3>\n\n\n\nAlmost every time Trenna went to hospital she would be asked if a student or trainee doctor could take her history, or ask her questions, or examine her, all as part of their training. Trenna always agreed and was extremely thorough and honest with them. It took quite a bit out of her at times when she was at her weakest. She knew she could refuse, but she felt she was helping others, the doctors and their future patients. And she felt that a lot of the medical profession had an inadequate understanding of Marfan Syndrome, and she wanted to correct that – and she felt better for doing it.<\/p>\n\n\n\n
Volunteer work where they don’t know you<\/strong><\/h3>\n\n\n\nThere was a period of several years when Trenna volunteered once a week helping migrants and refugees to Australia to learn English. She loved the work and she loved helping others develop a really important skill. But she also liked mixing with the other volunteers, and with them she only shared a little of her past and her disabilities. Although the half day of activities did wear her out she would be delighted that for a while, to those around her she had seemed quite \u201cnormal\u201d.
A thank you card from the students of one of the classes. Most had a very limited ability with English.<\/em><\/p>\n\n\n\nRecord keeping, diaries etc to keep distracted<\/strong><\/h2>\n\n\n\nThere are many reasons why Trenna kept diaries and meticulous records of all sorts. Just one of those, and it probably wasn\u2019t the main one, was that it kept her distracted. When she was concentrating on what she was writing she wasn\u2019t thinking (as much) of her pain or the fairly crumby set of cards she had been dealt in life.<\/p>\n\n\n\n
Horse riding<\/strong><\/h2>\n\n\n\nIn February 2020 Trenna did one session of horse riding. By this stage she was on oxygen full time and to leave the home she was pushed in a wheelchair. Despite this, Ruth the OT and the woman from the Claremont Therapeutic Riding Centre<\/a> got Trenna onto a horse, with the instructor sitting behind her. Trenna thought it was fabulous, she absolutely loved it. Almost immediately COVID came and she never had another opportunity to do it. She loved the experience, she loved meeting the horses, and she loved that it demonstrated that things that seem almost impossible to do were possible when people worked together. Thanks Ruth.
Trenna on the horse. The instructor is wearing a back pack containing Trenna’s oxygen supply, because by 2020 Trenna was on oxygen full time.<\/em><\/p>\n\n\n\nWater physiotherapy<\/strong><\/h3>\n\n\n\nIn her last two summers a physiotherapist had sessions with Trenna in our home swimming pool. They were a good, relatively low impact way for her to exercise. Thanks Brendan.<\/p>\n\n\n\n
Home INR machine<\/strong><\/h3>\n\n\n\nFor anyone who is taking warfarin and needs to monitor their INR these machines are well worth the money. It would be nicer if the test strips were a bit cheaper though, Mr Hoffmann-La Roche.
<\/p>\n\n\n\n
Custom made wheelchair<\/strong><\/h3>\n\n\n\nThe NDIS paid for a wheelchair customised to suit Trenna\u2019s size, shape and needs. Even taking into account how it would fit in our car. Trenna hated that her heart and lung failure had got to the point where she needed a wheelchair, but she also told me she loved her wheelchair, and it did make some outings possible that otherwise wouldn\u2019t have been.<\/p>\n\n\n\n
Home modifications<\/strong><\/h3>\n\n\n\nWe started the process to get the NDIS to pay for some home modifications. They certainly had potential to assist us, but as it turned out, the very long winded process to get the approval wasn\u2019t completed before Trenna died. I guess the lesson is if it is something you might need, start as soon as possible.<\/p>\n\n\n\n
iPads<\/strong><\/h3>\n\n\n\nTrenna got her first iPad in 2011. It was not without its frustrations, and there were many apps that were too hard to use, but overall she found it an invaluable tool, especially for writing.<\/p>\n\n\n\n
Still participating in decision making and where possible physical things<\/strong><\/h3>\n\n\n\nThroughout our life together Trenna and I strived for equal decision making and shared physical activities in line with our abilities.<\/p>\n\n\n\n
Cannabis and diazepam to help sleeping<\/strong><\/h3>\n\n\n\nTrenna tried various doses of prescribed cannabis oil to try to get pain relief. It just didn\u2019t work for her. However, 0.5 ml of cannabis oil and a 5 mg diazepam tablet about 45 minutes before bed definitely helped her to sleep.
<\/p>\n\n\n\n
Having an exit plan made her feel a lot better<\/strong><\/h3>\n\n\n\nTrenna had a plan to end her life if she felt it was necessary. Once she had that plan in place it reduced a lot of uncertainty and she described being calmer and at peace. (I may write more on this at a later point, but not now.) As it turned out, she didn’t need to use that plan.<\/p>\n\n\n\n
Telling people NO<\/strong><\/h3>\n\n\n\nShe wasn\u2019t particularly good at this but she knew the power of sometimes saying \u201cNO\u201d to invitations, visits, or other things that just felt like an impost.<\/p>\n\n\n\n
Coloured pipe cleaners<\/strong><\/h3>\n\n\n\nIt only worked when her eyesight was bad, and not when it was really, really bad. But bright, fluorescent coloured pipe cleaners wrapped around things helped her to see them. Our office chair had them on the protruding legs, to help see them (so as not to kick them) and cords for the camera and iPad were stored using colour coded pipe cleaners. Pipe cleaners ended up on lots of different things.
Bright pipe cleaners were used a lot. In this case, orange meant accessories for her camera. The orange on the bag made it easier to find it in a dark drawer, and the orange on the cord, held it together plus made it easier to find inside the bag.<\/em><\/p>\n\n\n\nPOTENTIALY having clothes made for her<\/strong><\/h3>\n\n\n\nTrenna had a LOT of trouble finding clothes – I think I\u2019ll do a separate post on the issue – but she was hopeful that getting clothes made for her, although very expensive, would work for her. As it turned out, it never did, but she and I thought it had potential.<\/p>\n\n\n\n
Only use natural fabrics – but that did limit choice<\/strong><\/h3>\n\n\n\nShe was a huge believer that everyone would feel better in garments made with natural fibre, such as cotton, as compared to human made fabrics. I agree with her. However, this made it even harder to find suitable clothes.<\/p>\n\n\n\n
Take photos<\/strong><\/h3>\n\n\n\nOften if we were out Trenna would get me to take a photo of something we were looking at. Once we were home she would get me to put it on the iPad or TV , and blow it up so she could see all the detail that she would otherwise miss.<\/p>\n\n\n\n
And organise photos carefully so you can find them<\/strong><\/h3>\n\n\n\nTrenna used her laptop computer, and later her iPads to organise her photos by year and in some cases topics. She spent many hours on this, which she found absorbing. Trenna had a fabulous memory for dates so it also meant that she could find almost any photo extremely quickly. Her favourite app for photos was the My Pics app on iPad.
<\/p>\n\n\n\n
Home hairdresser to wash hair<\/strong><\/h3>\n\n\n\nAs her heart and lung failure got worse it became increasingly difficult, indeed dangerous, for Trenna to wash her hair. For the last few months Dwyane<\/a> the mobile hairdresser visited and washed her hair once a week. The NDIS covered this expense.<\/p>\n\n\n\nHot and cold fan<\/strong><\/h3>\n\n\n\nOur house has ducted heating and cooling throughout. However using our fan on heating mode in the bathroom really helped the comfort level after a shower. Importantly, when having trouble breathing, cool air blown into your face can provide a lot of relief.
<\/p>\n\n\n\n
When young, she lay on her stomach<\/strong><\/h3>\n\n\n\nIf you have a scoliosis (as Trenna did) or other skeletal issues do this at your own risk! Up to when Trenna was about 40 years old, when her back was giving her a lot of trouble she would lie on the bed, with no pillow, on her stomach and not move for about an hour. She told me that it was initially very painful, but did help. She didn’t do it in later years. Everyone’s body is different so be cautious if you want to try this.<\/p>\n\n\n\n
Recce-vite<\/strong><\/h3>\n\n\n\nI have written a brief separate post on this topic<\/a>. If you tend to stay home a lot because of ill health or disability the recce-vite is designed to give you a bit of a lift without being too taxing on the body. A short, 2 hour maximum trip to a specific location to do a specific thing. It would work for busy able bodied people too, including couples who don’t find the time to go out together much.<\/p>\n\n\n\nBlanket raiser<\/strong><\/h3>\n\n\n\nThese are relatively inexpensive (you could even make one yourself) but keep the blankets off your feet. Good if you need to sleep on your back or have foot injuries or pressure wounds.
<\/p>\n\n\n\n
Apple Watch<\/strong><\/h3>\n\n\n\nIt took a lot of persuading but the NDIS did fund Trenna to get an Apple Watch. Mind you her iPhone 6+ was incompatible, so we had to buy a new iPhone which wasn’t funded. It meant that she could ring me by asking Siri, she could get the watch to “ping” her iPhone when she couldn’t see it, and it had “falls detection” which would have called me and emergency services if she fell and didn’t get up. It could also speak the time.<\/p>\n\n\n\n
Trip to Japan to try a mid length trip<\/strong><\/h3>\n\n\n\nWe were invited to our niece’s wedding in The Netherlands. That’s about 24 hours of flying from Perth. Trenna thought that because of her health she probably couldn’t do that distance anymore. We decided to go on a holiday to Japan, about a 9 hour flight. Great holiday, but it was clear that a trip to Europe was no longer a possibility.<\/p>\n\n\n\n
Exercises to reduce pain –<\/strong> until she couldn’t<\/strong><\/h3>\n\n\n\nWhen I first got together with Trenna in 1988 she was very skeptical that exercise could be used to reduce pain – it seems a bit counter intuitive. A few years later she started doing a regular, moderate exercise session, each morning. Mainly floor exercises and some very light hand weights, I think they were about 0.5kg each. She is certain it helped a great deal. For the last several years of her life she couldn’t maintain that, but she did whatever exercise she could. In due course I will publish some of the exercises Trenna did.<\/p>\n\n\n\n
Not lifting anything weighing more than 2 kg (about 4.4 pounds)<\/strong><\/h3>\n\n\n\nThat was the advice from one medical professional and Trenna followed it (usually). She had real trouble lifting anything that heavy anyway.<\/p>\n\n\n\n
Pain killers (though it isn’t all good news)<\/strong><\/h3>\n\n\n\nAnyone who uses a lot of pain killers knows what a two-edged sword they are. They have a big effect on your metabolism and they can cloud your thinking (but pain does that too). Obviously this is something you need to sort out with your doctor or pain specialist but for those interested, for a good part of her later life Trenna did the following. I would wake her in the morning and she would take 2 Panadeine Forte and a 5 mg Diazepam (as a muscle relaxant) she would then sit on the side of the bed and we would talk or I would read her news stories (which usually put her back to sleep!) until she was ready to get up – typically 30 or 40 minutes. At 2pm she would take more 2 Panadeine Forte. Then about 45 minutes before bed she would take 2 Panadeine Fort and 1 Diazepam. For the last couple of years she took a Lyrica as well. Also 0.5ml of cannabis oil to help her sleep. Very occasionally if she had excess pain during the day she would take 2 more Panadeine Forte. Most of the time she just grinned and beared it, not wanting her thinking to get any fuzzier than it already was. Also, Trenna had a Norspan 10 patch which she changed once a week.<\/p>\n\n\n\n
Experiment, but keep good notes<\/strong><\/h3>\n\n\n\nTrenna and I found many coping strategies by just trying stuff out. For that to be effective though you need to make a record of what your doing and what the effect is. And of course, ONLY CHANGE ONE THING AT A TIME!<\/p>\n\n\n\n
Write down your pills as you take them<\/strong><\/h3>\n\n\n\nIf you are taking lots of medication you are probably using a Webster-Pak, a plastic container with compartments marketed with the day and time, or some other similar method that allows you to look back to confirm you have taken your morning pills, or whatever. But we found that if there was ad hoc medication taken, it was a good idea to write it down STRAIGHT AWAY.<\/p>\n\n\n\n
Desk rider<\/strong><\/h3>\n\n\n\nAnother piece of equipment funded by the NDIS. They allowed it because it was during COVID lockdown and all gyms were closed. There was no way Trenna could sit on a stationary or real bike’s saddle, or support her upper body on the handle bars. The desk rider, recommended by Trenna’s physiotherapist, Brendan, allowed her to sit in a lounge chair and pedal. This was another thing that came very late in Trenna’s life so she could only ride for a couple of minutes before taking a break and repeating the exercise.
<\/p>\n\n\n\n
Don’t forget your friends, and don’t forget it can be hard for them<\/strong><\/h3>\n\n\n\nWhen you are battling chronic illness, and even life itself, it is easy to deprioritise friends and family. But they can be really useful as a distraction, or hopefully, as a real help. It is important to note though, depending on circumstances, a very sick person can be a stark reminder of the frailty of us all. I haven’t got any particular advice on cultivating your friends when everything is so hard, but, I do think it is worth trying. <\/p>\n\n\n\n
And Some That Didn’t<\/h2>\n\n\n\nTouch screen buttons and audiobooks<\/strong><\/h3>\n\n\n\nI talk a bit about touch screens in my post about our ill fated trip to Wellington<\/a>. You can’t feel the buttons so it’s hard to find them if you can’t see well. Lots of audiobook readers are MUCH easier to use if you can see! Tren got through at least one audio book – she was very motivated to “read” Life<\/em>, by Keith Richards. <\/p>\n\n\n\nBadly designed remote controls<\/strong><\/h3>\n\n\n\nTiny buttons, with tiny writing on them, and little colour differentiation really were murder. Having said that, Trenna’s main evening activity was to “slouch on the couch” as she called it, and watch TV through our PVR. She was REALLY expert at using those two remotes. <\/p>\n\n\n\n
Too many doctors when she was chronically ill<\/strong><\/h3>\n\n\n\nThere gets a point when you are chronically ill, with lots of comorbidities, when lots of medical assistance is frankly, too much. Trenna had lots and lots of specialists, and I thank them all because they all tried to do the right thing. But when you are already weak, and their interventions may only make small improvements (at best), it makes sense to reduce the number of medical interventions.
A snippet from Trenna’s comprehensive medical notes. This one is recording the outcome from a specialist visit.<\/em> He had been trying hard to find things to assist Trenna, but wasn’t having a lot of success as she was so ill.<\/em><\/p>\n\n\n\nBusiness class to NZ<\/strong><\/h3>\n\n\n\nOnce we chose to fly business class hoping it was better for Trenna. The extra room probably did help but she couldn’t get the full benefit of the seat and the entertainment facilities. Read the full story here<\/a>.
Find the start button on this when you are blind.<\/em><\/p>\n\n\n\nPain killers<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nTrenna was delighted when she was asked to join a group of women from the neighbourhood for a weekly craft group. (One of the husbands called it “Stich and Bitch” which Trenna thought was pretty funny). Participating in a group like that gave Trenna something to look forward to, a sense of achievement (she knitted and crocheted several things) and it made her feel a bit more normal.<\/p>\n\n\n\n
Pacing<\/strong><\/h3>\n\n\n\nJust being conscious of what she was doing, including its likely effect on her body, including the cumulative effect of doing stuff.<\/p>\n\n\n\n
Doctors notes<\/strong><\/h3>\n\n\n\nBefore every visit to a doctor or specialist Trenna would write down anything she had to report and any questions she had. After every visit she would write notes about what was said.
Hand written notes about a cardiologist appointment. This one from 2006. Once Trenna got an iPad all the doctors notes were done on tha<\/em>t.<\/p>\n\n\n\nA doctor visit companion<\/strong><\/h3>\n\n\n\nExcept for a brief, experimental period Trenna always took someone (almost always me) with her to doctor appointments. One of the benefits were that it helped with the notes afterwards, reducing the chance of missing something, and it ensured I was up to speed with her care needs.<\/p>\n\n\n\n
Sheepskin on the seat and seatbelt<\/strong><\/h3>\n\n\n\nMarfans can have boney bottoms! On cars that didn’t have sheepskin seat covers she placed a piece of natural, thick, sheepskin under her bottom. It was comfortable (I know, I’ve inherited the sheepskin), cool in summer and warm in winter. She also had a rectangle of sheepskin, the two long edges joined by Velcro that she put on the sash part of the seatbelt to protect her boney chest.
Some sheepskin on the car seat and some on the seatbelt for added protection.<\/em><\/p>\n\n\n\nInflatable cushion<\/strong><\/h3>\n\n\n\nThis was great for sitting on any unpadded seat – inside or outside. We always carried it with us – weighed nothing and was ready in seconds.
<\/p>\n\n\n\n
Singing<\/strong><\/h3>\n\n\n\nTrenna, by her own (correct!) admission was a terrible singer. BUT, she enjoyed it. In her last year she was able to persuade her visiting speech therapist – Callum, who is a musician – to try singing as a therapy. We never got around to measuring it, but my assessment is that her voice projection improved considerably and she was much happier, frequently practicing between therapy sessions. As an added bonus Trenna actually got quite good at singing! Thanks Callum.<\/p>\n\n\n\n
Speech therapist, occupational therapist, physiotherapist<\/strong><\/h3>\n\n\n\nGetting supports through the Australian National Disability Insurance Scheme (NDIS) was really problematic and stressful to organise, but for the last couple of years of her life Trenna was able to access a range of therapists who came to our house. At times it was exhausting, but they all brought some real benefits to Trenna. There were a number of them, but thank you in particular to Callum, Ruth, Kathryn and Brendan.<\/p>\n\n\n\n
Munro shoes<\/strong><\/h2>\n\n\n\nLike many Marfans Trenna had long thin feet, with no real height to them. One foot was a quadruple A fitting and the other a triple A. It was a nightmare trying to find shoes that fitted – she very rarely did. One of the better brands for fit was Munro America. The down side was that we had to order them from the USA and they cost hundreds of dollars more than a “normal” shoe in Australia. We also had to wait for weeks to receive them, and more than half the purchases had to be returned because they weren’t a good enough fit. That leads me to …..<\/p>\n\n\n\n
PayPal Refunded Returns<\/strong><\/h3>\n\n\n\nWhat a great scheme that is. If you are registered for this and pay with PayPal they will refund the cost of returning goods (like shoes) up to $45-00 eight times a year. Mind you, it costs MORE than $45 to send a pair of shoes from Australia to the US.<\/p>\n\n\n\n
Search and destroy<\/strong><\/h3>\n\n\n\nI have a tendency to accumulate junk mail, newspapers, pamphlets – all manner of ephemeral reading matter. Trenna designated that I should do 10 minutes every day of “search and destroy”. Basically look at the stuff I’ve picked up, read it, and if I don’t need it, throw it in the recycling. It worked well, and I’ve recently reintroduced it into my life.<\/p>\n\n\n\n
Training doctors<\/strong><\/h3>\n\n\n\nAlmost every time Trenna went to hospital she would be asked if a student or trainee doctor could take her history, or ask her questions, or examine her, all as part of their training. Trenna always agreed and was extremely thorough and honest with them. It took quite a bit out of her at times when she was at her weakest. She knew she could refuse, but she felt she was helping others, the doctors and their future patients. And she felt that a lot of the medical profession had an inadequate understanding of Marfan Syndrome, and she wanted to correct that – and she felt better for doing it.<\/p>\n\n\n\n
Volunteer work where they don’t know you<\/strong><\/h3>\n\n\n\nThere was a period of several years when Trenna volunteered once a week helping migrants and refugees to Australia to learn English. She loved the work and she loved helping others develop a really important skill. But she also liked mixing with the other volunteers, and with them she only shared a little of her past and her disabilities. Although the half day of activities did wear her out she would be delighted that for a while, to those around her she had seemed quite \u201cnormal\u201d.
A thank you card from the students of one of the classes. Most had a very limited ability with English.<\/em><\/p>\n\n\n\nRecord keeping, diaries etc to keep distracted<\/strong><\/h2>\n\n\n\nThere are many reasons why Trenna kept diaries and meticulous records of all sorts. Just one of those, and it probably wasn\u2019t the main one, was that it kept her distracted. When she was concentrating on what she was writing she wasn\u2019t thinking (as much) of her pain or the fairly crumby set of cards she had been dealt in life.<\/p>\n\n\n\n
Horse riding<\/strong><\/h2>\n\n\n\nIn February 2020 Trenna did one session of horse riding. By this stage she was on oxygen full time and to leave the home she was pushed in a wheelchair. Despite this, Ruth the OT and the woman from the Claremont Therapeutic Riding Centre<\/a> got Trenna onto a horse, with the instructor sitting behind her. Trenna thought it was fabulous, she absolutely loved it. Almost immediately COVID came and she never had another opportunity to do it. She loved the experience, she loved meeting the horses, and she loved that it demonstrated that things that seem almost impossible to do were possible when people worked together. Thanks Ruth.
Trenna on the horse. The instructor is wearing a back pack containing Trenna’s oxygen supply, because by 2020 Trenna was on oxygen full time.<\/em><\/p>\n\n\n\nWater physiotherapy<\/strong><\/h3>\n\n\n\nIn her last two summers a physiotherapist had sessions with Trenna in our home swimming pool. They were a good, relatively low impact way for her to exercise. Thanks Brendan.<\/p>\n\n\n\n
Home INR machine<\/strong><\/h3>\n\n\n\nFor anyone who is taking warfarin and needs to monitor their INR these machines are well worth the money. It would be nicer if the test strips were a bit cheaper though, Mr Hoffmann-La Roche.
<\/p>\n\n\n\n
Custom made wheelchair<\/strong><\/h3>\n\n\n\nThe NDIS paid for a wheelchair customised to suit Trenna\u2019s size, shape and needs. Even taking into account how it would fit in our car. Trenna hated that her heart and lung failure had got to the point where she needed a wheelchair, but she also told me she loved her wheelchair, and it did make some outings possible that otherwise wouldn\u2019t have been.<\/p>\n\n\n\n
Home modifications<\/strong><\/h3>\n\n\n\nWe started the process to get the NDIS to pay for some home modifications. They certainly had potential to assist us, but as it turned out, the very long winded process to get the approval wasn\u2019t completed before Trenna died. I guess the lesson is if it is something you might need, start as soon as possible.<\/p>\n\n\n\n
iPads<\/strong><\/h3>\n\n\n\nTrenna got her first iPad in 2011. It was not without its frustrations, and there were many apps that were too hard to use, but overall she found it an invaluable tool, especially for writing.<\/p>\n\n\n\n
Still participating in decision making and where possible physical things<\/strong><\/h3>\n\n\n\nThroughout our life together Trenna and I strived for equal decision making and shared physical activities in line with our abilities.<\/p>\n\n\n\n
Cannabis and diazepam to help sleeping<\/strong><\/h3>\n\n\n\nTrenna tried various doses of prescribed cannabis oil to try to get pain relief. It just didn\u2019t work for her. However, 0.5 ml of cannabis oil and a 5 mg diazepam tablet about 45 minutes before bed definitely helped her to sleep.
<\/p>\n\n\n\n
Having an exit plan made her feel a lot better<\/strong><\/h3>\n\n\n\nTrenna had a plan to end her life if she felt it was necessary. Once she had that plan in place it reduced a lot of uncertainty and she described being calmer and at peace. (I may write more on this at a later point, but not now.) As it turned out, she didn’t need to use that plan.<\/p>\n\n\n\n
Telling people NO<\/strong><\/h3>\n\n\n\nShe wasn\u2019t particularly good at this but she knew the power of sometimes saying \u201cNO\u201d to invitations, visits, or other things that just felt like an impost.<\/p>\n\n\n\n
Coloured pipe cleaners<\/strong><\/h3>\n\n\n\nIt only worked when her eyesight was bad, and not when it was really, really bad. But bright, fluorescent coloured pipe cleaners wrapped around things helped her to see them. Our office chair had them on the protruding legs, to help see them (so as not to kick them) and cords for the camera and iPad were stored using colour coded pipe cleaners. Pipe cleaners ended up on lots of different things.
Bright pipe cleaners were used a lot. In this case, orange meant accessories for her camera. The orange on the bag made it easier to find it in a dark drawer, and the orange on the cord, held it together plus made it easier to find inside the bag.<\/em><\/p>\n\n\n\nPOTENTIALY having clothes made for her<\/strong><\/h3>\n\n\n\nTrenna had a LOT of trouble finding clothes – I think I\u2019ll do a separate post on the issue – but she was hopeful that getting clothes made for her, although very expensive, would work for her. As it turned out, it never did, but she and I thought it had potential.<\/p>\n\n\n\n
Only use natural fabrics – but that did limit choice<\/strong><\/h3>\n\n\n\nShe was a huge believer that everyone would feel better in garments made with natural fibre, such as cotton, as compared to human made fabrics. I agree with her. However, this made it even harder to find suitable clothes.<\/p>\n\n\n\n
Take photos<\/strong><\/h3>\n\n\n\nOften if we were out Trenna would get me to take a photo of something we were looking at. Once we were home she would get me to put it on the iPad or TV , and blow it up so she could see all the detail that she would otherwise miss.<\/p>\n\n\n\n
And organise photos carefully so you can find them<\/strong><\/h3>\n\n\n\nTrenna used her laptop computer, and later her iPads to organise her photos by year and in some cases topics. She spent many hours on this, which she found absorbing. Trenna had a fabulous memory for dates so it also meant that she could find almost any photo extremely quickly. Her favourite app for photos was the My Pics app on iPad.
<\/p>\n\n\n\n
Home hairdresser to wash hair<\/strong><\/h3>\n\n\n\nAs her heart and lung failure got worse it became increasingly difficult, indeed dangerous, for Trenna to wash her hair. For the last few months Dwyane<\/a> the mobile hairdresser visited and washed her hair once a week. The NDIS covered this expense.<\/p>\n\n\n\nHot and cold fan<\/strong><\/h3>\n\n\n\nOur house has ducted heating and cooling throughout. However using our fan on heating mode in the bathroom really helped the comfort level after a shower. Importantly, when having trouble breathing, cool air blown into your face can provide a lot of relief.
<\/p>\n\n\n\n
When young, she lay on her stomach<\/strong><\/h3>\n\n\n\nIf you have a scoliosis (as Trenna did) or other skeletal issues do this at your own risk! Up to when Trenna was about 40 years old, when her back was giving her a lot of trouble she would lie on the bed, with no pillow, on her stomach and not move for about an hour. She told me that it was initially very painful, but did help. She didn’t do it in later years. Everyone’s body is different so be cautious if you want to try this.<\/p>\n\n\n\n
Recce-vite<\/strong><\/h3>\n\n\n\nI have written a brief separate post on this topic<\/a>. If you tend to stay home a lot because of ill health or disability the recce-vite is designed to give you a bit of a lift without being too taxing on the body. A short, 2 hour maximum trip to a specific location to do a specific thing. It would work for busy able bodied people too, including couples who don’t find the time to go out together much.<\/p>\n\n\n\nBlanket raiser<\/strong><\/h3>\n\n\n\nThese are relatively inexpensive (you could even make one yourself) but keep the blankets off your feet. Good if you need to sleep on your back or have foot injuries or pressure wounds.
<\/p>\n\n\n\n
Apple Watch<\/strong><\/h3>\n\n\n\nIt took a lot of persuading but the NDIS did fund Trenna to get an Apple Watch. Mind you her iPhone 6+ was incompatible, so we had to buy a new iPhone which wasn’t funded. It meant that she could ring me by asking Siri, she could get the watch to “ping” her iPhone when she couldn’t see it, and it had “falls detection” which would have called me and emergency services if she fell and didn’t get up. It could also speak the time.<\/p>\n\n\n\n
Trip to Japan to try a mid length trip<\/strong><\/h3>\n\n\n\nWe were invited to our niece’s wedding in The Netherlands. That’s about 24 hours of flying from Perth. Trenna thought that because of her health she probably couldn’t do that distance anymore. We decided to go on a holiday to Japan, about a 9 hour flight. Great holiday, but it was clear that a trip to Europe was no longer a possibility.<\/p>\n\n\n\n
Exercises to reduce pain –<\/strong> until she couldn’t<\/strong><\/h3>\n\n\n\nWhen I first got together with Trenna in 1988 she was very skeptical that exercise could be used to reduce pain – it seems a bit counter intuitive. A few years later she started doing a regular, moderate exercise session, each morning. Mainly floor exercises and some very light hand weights, I think they were about 0.5kg each. She is certain it helped a great deal. For the last several years of her life she couldn’t maintain that, but she did whatever exercise she could. In due course I will publish some of the exercises Trenna did.<\/p>\n\n\n\n
Not lifting anything weighing more than 2 kg (about 4.4 pounds)<\/strong><\/h3>\n\n\n\nThat was the advice from one medical professional and Trenna followed it (usually). She had real trouble lifting anything that heavy anyway.<\/p>\n\n\n\n
Pain killers (though it isn’t all good news)<\/strong><\/h3>\n\n\n\nAnyone who uses a lot of pain killers knows what a two-edged sword they are. They have a big effect on your metabolism and they can cloud your thinking (but pain does that too). Obviously this is something you need to sort out with your doctor or pain specialist but for those interested, for a good part of her later life Trenna did the following. I would wake her in the morning and she would take 2 Panadeine Forte and a 5 mg Diazepam (as a muscle relaxant) she would then sit on the side of the bed and we would talk or I would read her news stories (which usually put her back to sleep!) until she was ready to get up – typically 30 or 40 minutes. At 2pm she would take more 2 Panadeine Forte. Then about 45 minutes before bed she would take 2 Panadeine Fort and 1 Diazepam. For the last couple of years she took a Lyrica as well. Also 0.5ml of cannabis oil to help her sleep. Very occasionally if she had excess pain during the day she would take 2 more Panadeine Forte. Most of the time she just grinned and beared it, not wanting her thinking to get any fuzzier than it already was. Also, Trenna had a Norspan 10 patch which she changed once a week.<\/p>\n\n\n\n
Experiment, but keep good notes<\/strong><\/h3>\n\n\n\nTrenna and I found many coping strategies by just trying stuff out. For that to be effective though you need to make a record of what your doing and what the effect is. And of course, ONLY CHANGE ONE THING AT A TIME!<\/p>\n\n\n\n
Write down your pills as you take them<\/strong><\/h3>\n\n\n\nIf you are taking lots of medication you are probably using a Webster-Pak, a plastic container with compartments marketed with the day and time, or some other similar method that allows you to look back to confirm you have taken your morning pills, or whatever. But we found that if there was ad hoc medication taken, it was a good idea to write it down STRAIGHT AWAY.<\/p>\n\n\n\n
Desk rider<\/strong><\/h3>\n\n\n\nAnother piece of equipment funded by the NDIS. They allowed it because it was during COVID lockdown and all gyms were closed. There was no way Trenna could sit on a stationary or real bike’s saddle, or support her upper body on the handle bars. The desk rider, recommended by Trenna’s physiotherapist, Brendan, allowed her to sit in a lounge chair and pedal. This was another thing that came very late in Trenna’s life so she could only ride for a couple of minutes before taking a break and repeating the exercise.
<\/p>\n\n\n\n
Don’t forget your friends, and don’t forget it can be hard for them<\/strong><\/h3>\n\n\n\nWhen you are battling chronic illness, and even life itself, it is easy to deprioritise friends and family. But they can be really useful as a distraction, or hopefully, as a real help. It is important to note though, depending on circumstances, a very sick person can be a stark reminder of the frailty of us all. I haven’t got any particular advice on cultivating your friends when everything is so hard, but, I do think it is worth trying. <\/p>\n\n\n\n
And Some That Didn’t<\/h2>\n\n\n\nTouch screen buttons and audiobooks<\/strong><\/h3>\n\n\n\nI talk a bit about touch screens in my post about our ill fated trip to Wellington<\/a>. You can’t feel the buttons so it’s hard to find them if you can’t see well. Lots of audiobook readers are MUCH easier to use if you can see! Tren got through at least one audio book – she was very motivated to “read” Life<\/em>, by Keith Richards. <\/p>\n\n\n\nBadly designed remote controls<\/strong><\/h3>\n\n\n\nTiny buttons, with tiny writing on them, and little colour differentiation really were murder. Having said that, Trenna’s main evening activity was to “slouch on the couch” as she called it, and watch TV through our PVR. She was REALLY expert at using those two remotes. <\/p>\n\n\n\n
Too many doctors when she was chronically ill<\/strong><\/h3>\n\n\n\nThere gets a point when you are chronically ill, with lots of comorbidities, when lots of medical assistance is frankly, too much. Trenna had lots and lots of specialists, and I thank them all because they all tried to do the right thing. But when you are already weak, and their interventions may only make small improvements (at best), it makes sense to reduce the number of medical interventions.
A snippet from Trenna’s comprehensive medical notes. This one is recording the outcome from a specialist visit.<\/em> He had been trying hard to find things to assist Trenna, but wasn’t having a lot of success as she was so ill.<\/em><\/p>\n\n\n\nBusiness class to NZ<\/strong><\/h3>\n\n\n\nOnce we chose to fly business class hoping it was better for Trenna. The extra room probably did help but she couldn’t get the full benefit of the seat and the entertainment facilities. Read the full story here<\/a>.
Find the start button on this when you are blind.<\/em><\/p>\n\n\n\nPain killers<\/strong><\/h3>\n\n\n\n
Before every visit to a doctor or specialist Trenna would write down anything she had to report and any questions she had. After every visit she would write notes about what was said. Except for a brief, experimental period Trenna always took someone (almost always me) with her to doctor appointments. One of the benefits were that it helped with the notes afterwards, reducing the chance of missing something, and it ensured I was up to speed with her care needs.<\/p>\n\n\n\n Marfans can have boney bottoms! On cars that didn’t have sheepskin seat covers she placed a piece of natural, thick, sheepskin under her bottom. It was comfortable (I know, I’ve inherited the sheepskin), cool in summer and warm in winter. She also had a rectangle of sheepskin, the two long edges joined by Velcro that she put on the sash part of the seatbelt to protect her boney chest. This was great for sitting on any unpadded seat – inside or outside. We always carried it with us – weighed nothing and was ready in seconds. Trenna, by her own (correct!) admission was a terrible singer. BUT, she enjoyed it. In her last year she was able to persuade her visiting speech therapist – Callum, who is a musician – to try singing as a therapy. We never got around to measuring it, but my assessment is that her voice projection improved considerably and she was much happier, frequently practicing between therapy sessions. As an added bonus Trenna actually got quite good at singing! Thanks Callum.<\/p>\n\n\n\n Getting supports through the Australian National Disability Insurance Scheme (NDIS) was really problematic and stressful to organise, but for the last couple of years of her life Trenna was able to access a range of therapists who came to our house. At times it was exhausting, but they all brought some real benefits to Trenna. There were a number of them, but thank you in particular to Callum, Ruth, Kathryn and Brendan.<\/p>\n\n\n\n Like many Marfans Trenna had long thin feet, with no real height to them. One foot was a quadruple A fitting and the other a triple A. It was a nightmare trying to find shoes that fitted – she very rarely did. One of the better brands for fit was Munro America. The down side was that we had to order them from the USA and they cost hundreds of dollars more than a “normal” shoe in Australia. We also had to wait for weeks to receive them, and more than half the purchases had to be returned because they weren’t a good enough fit. That leads me to …..<\/p>\n\n\n\n What a great scheme that is. If you are registered for this and pay with PayPal they will refund the cost of returning goods (like shoes) up to $45-00 eight times a year. Mind you, it costs MORE than $45 to send a pair of shoes from Australia to the US.<\/p>\n\n\n\n I have a tendency to accumulate junk mail, newspapers, pamphlets – all manner of ephemeral reading matter. Trenna designated that I should do 10 minutes every day of “search and destroy”. Basically look at the stuff I’ve picked up, read it, and if I don’t need it, throw it in the recycling. It worked well, and I’ve recently reintroduced it into my life.<\/p>\n\n\n\n Almost every time Trenna went to hospital she would be asked if a student or trainee doctor could take her history, or ask her questions, or examine her, all as part of their training. Trenna always agreed and was extremely thorough and honest with them. It took quite a bit out of her at times when she was at her weakest. She knew she could refuse, but she felt she was helping others, the doctors and their future patients. And she felt that a lot of the medical profession had an inadequate understanding of Marfan Syndrome, and she wanted to correct that – and she felt better for doing it.<\/p>\n\n\n\n There was a period of several years when Trenna volunteered once a week helping migrants and refugees to Australia to learn English. She loved the work and she loved helping others develop a really important skill. But she also liked mixing with the other volunteers, and with them she only shared a little of her past and her disabilities. Although the half day of activities did wear her out she would be delighted that for a while, to those around her she had seemed quite \u201cnormal\u201d. There are many reasons why Trenna kept diaries and meticulous records of all sorts. Just one of those, and it probably wasn\u2019t the main one, was that it kept her distracted. When she was concentrating on what she was writing she wasn\u2019t thinking (as much) of her pain or the fairly crumby set of cards she had been dealt in life.<\/p>\n\n\n\n In February 2020 Trenna did one session of horse riding. By this stage she was on oxygen full time and to leave the home she was pushed in a wheelchair. Despite this, Ruth the OT and the woman from the Claremont Therapeutic Riding Centre<\/a> got Trenna onto a horse, with the instructor sitting behind her. Trenna thought it was fabulous, she absolutely loved it. Almost immediately COVID came and she never had another opportunity to do it. She loved the experience, she loved meeting the horses, and she loved that it demonstrated that things that seem almost impossible to do were possible when people worked together. Thanks Ruth. In her last two summers a physiotherapist had sessions with Trenna in our home swimming pool. They were a good, relatively low impact way for her to exercise. Thanks Brendan.<\/p>\n\n\n\n For anyone who is taking warfarin and needs to monitor their INR these machines are well worth the money. It would be nicer if the test strips were a bit cheaper though, Mr Hoffmann-La Roche. The NDIS paid for a wheelchair customised to suit Trenna\u2019s size, shape and needs. Even taking into account how it would fit in our car. Trenna hated that her heart and lung failure had got to the point where she needed a wheelchair, but she also told me she loved her wheelchair, and it did make some outings possible that otherwise wouldn\u2019t have been.<\/p>\n\n\n\n We started the process to get the NDIS to pay for some home modifications. They certainly had potential to assist us, but as it turned out, the very long winded process to get the approval wasn\u2019t completed before Trenna died. I guess the lesson is if it is something you might need, start as soon as possible.<\/p>\n\n\n\n Trenna got her first iPad in 2011. It was not without its frustrations, and there were many apps that were too hard to use, but overall she found it an invaluable tool, especially for writing.<\/p>\n\n\n\n Throughout our life together Trenna and I strived for equal decision making and shared physical activities in line with our abilities.<\/p>\n\n\n\n Trenna tried various doses of prescribed cannabis oil to try to get pain relief. It just didn\u2019t work for her. However, 0.5 ml of cannabis oil and a 5 mg diazepam tablet about 45 minutes before bed definitely helped her to sleep. Trenna had a plan to end her life if she felt it was necessary. Once she had that plan in place it reduced a lot of uncertainty and she described being calmer and at peace. (I may write more on this at a later point, but not now.) As it turned out, she didn’t need to use that plan.<\/p>\n\n\n\n She wasn\u2019t particularly good at this but she knew the power of sometimes saying \u201cNO\u201d to invitations, visits, or other things that just felt like an impost.<\/p>\n\n\n\n It only worked when her eyesight was bad, and not when it was really, really bad. But bright, fluorescent coloured pipe cleaners wrapped around things helped her to see them. Our office chair had them on the protruding legs, to help see them (so as not to kick them) and cords for the camera and iPad were stored using colour coded pipe cleaners. Pipe cleaners ended up on lots of different things. Trenna had a LOT of trouble finding clothes – I think I\u2019ll do a separate post on the issue – but she was hopeful that getting clothes made for her, although very expensive, would work for her. As it turned out, it never did, but she and I thought it had potential.<\/p>\n\n\n\n She was a huge believer that everyone would feel better in garments made with natural fibre, such as cotton, as compared to human made fabrics. I agree with her. However, this made it even harder to find suitable clothes.<\/p>\n\n\n\n Often if we were out Trenna would get me to take a photo of something we were looking at. Once we were home she would get me to put it on the iPad or TV , and blow it up so she could see all the detail that she would otherwise miss.<\/p>\n\n\n\n Trenna used her laptop computer, and later her iPads to organise her photos by year and in some cases topics. She spent many hours on this, which she found absorbing. Trenna had a fabulous memory for dates so it also meant that she could find almost any photo extremely quickly. Her favourite app for photos was the My Pics app on iPad. As her heart and lung failure got worse it became increasingly difficult, indeed dangerous, for Trenna to wash her hair. For the last few months Dwyane<\/a> the mobile hairdresser visited and washed her hair once a week. The NDIS covered this expense.<\/p>\n\n\n\n Our house has ducted heating and cooling throughout. However using our fan on heating mode in the bathroom really helped the comfort level after a shower. Importantly, when having trouble breathing, cool air blown into your face can provide a lot of relief. If you have a scoliosis (as Trenna did) or other skeletal issues do this at your own risk! Up to when Trenna was about 40 years old, when her back was giving her a lot of trouble she would lie on the bed, with no pillow, on her stomach and not move for about an hour. She told me that it was initially very painful, but did help. She didn’t do it in later years. Everyone’s body is different so be cautious if you want to try this.<\/p>\n\n\n\n I have written a brief separate post on this topic<\/a>. If you tend to stay home a lot because of ill health or disability the recce-vite is designed to give you a bit of a lift without being too taxing on the body. A short, 2 hour maximum trip to a specific location to do a specific thing. It would work for busy able bodied people too, including couples who don’t find the time to go out together much.<\/p>\n\n\n\n These are relatively inexpensive (you could even make one yourself) but keep the blankets off your feet. Good if you need to sleep on your back or have foot injuries or pressure wounds. It took a lot of persuading but the NDIS did fund Trenna to get an Apple Watch. Mind you her iPhone 6+ was incompatible, so we had to buy a new iPhone which wasn’t funded. It meant that she could ring me by asking Siri, she could get the watch to “ping” her iPhone when she couldn’t see it, and it had “falls detection” which would have called me and emergency services if she fell and didn’t get up. It could also speak the time.<\/p>\n\n\n\n We were invited to our niece’s wedding in The Netherlands. That’s about 24 hours of flying from Perth. Trenna thought that because of her health she probably couldn’t do that distance anymore. We decided to go on a holiday to Japan, about a 9 hour flight. Great holiday, but it was clear that a trip to Europe was no longer a possibility.<\/p>\n\n\n\n When I first got together with Trenna in 1988 she was very skeptical that exercise could be used to reduce pain – it seems a bit counter intuitive. A few years later she started doing a regular, moderate exercise session, each morning. Mainly floor exercises and some very light hand weights, I think they were about 0.5kg each. She is certain it helped a great deal. For the last several years of her life she couldn’t maintain that, but she did whatever exercise she could. In due course I will publish some of the exercises Trenna did.<\/p>\n\n\n\n That was the advice from one medical professional and Trenna followed it (usually). She had real trouble lifting anything that heavy anyway.<\/p>\n\n\n\n Anyone who uses a lot of pain killers knows what a two-edged sword they are. They have a big effect on your metabolism and they can cloud your thinking (but pain does that too). Obviously this is something you need to sort out with your doctor or pain specialist but for those interested, for a good part of her later life Trenna did the following. I would wake her in the morning and she would take 2 Panadeine Forte and a 5 mg Diazepam (as a muscle relaxant) she would then sit on the side of the bed and we would talk or I would read her news stories (which usually put her back to sleep!) until she was ready to get up – typically 30 or 40 minutes. At 2pm she would take more 2 Panadeine Forte. Then about 45 minutes before bed she would take 2 Panadeine Fort and 1 Diazepam. For the last couple of years she took a Lyrica as well. Also 0.5ml of cannabis oil to help her sleep. Very occasionally if she had excess pain during the day she would take 2 more Panadeine Forte. Most of the time she just grinned and beared it, not wanting her thinking to get any fuzzier than it already was. Also, Trenna had a Norspan 10 patch which she changed once a week.<\/p>\n\n\n\n Trenna and I found many coping strategies by just trying stuff out. For that to be effective though you need to make a record of what your doing and what the effect is. And of course, ONLY CHANGE ONE THING AT A TIME!<\/p>\n\n\n\n If you are taking lots of medication you are probably using a Webster-Pak, a plastic container with compartments marketed with the day and time, or some other similar method that allows you to look back to confirm you have taken your morning pills, or whatever. But we found that if there was ad hoc medication taken, it was a good idea to write it down STRAIGHT AWAY.<\/p>\n\n\n\n Another piece of equipment funded by the NDIS. They allowed it because it was during COVID lockdown and all gyms were closed. There was no way Trenna could sit on a stationary or real bike’s saddle, or support her upper body on the handle bars. The desk rider, recommended by Trenna’s physiotherapist, Brendan, allowed her to sit in a lounge chair and pedal. This was another thing that came very late in Trenna’s life so she could only ride for a couple of minutes before taking a break and repeating the exercise. When you are battling chronic illness, and even life itself, it is easy to deprioritise friends and family. But they can be really useful as a distraction, or hopefully, as a real help. It is important to note though, depending on circumstances, a very sick person can be a stark reminder of the frailty of us all. I haven’t got any particular advice on cultivating your friends when everything is so hard, but, I do think it is worth trying. <\/p>\n\n\n\n I talk a bit about touch screens in my post about our ill fated trip to Wellington<\/a>. You can’t feel the buttons so it’s hard to find them if you can’t see well. Lots of audiobook readers are MUCH easier to use if you can see! Tren got through at least one audio book – she was very motivated to “read” Life<\/em>, by Keith Richards. <\/p>\n\n\n\n Tiny buttons, with tiny writing on them, and little colour differentiation really were murder. Having said that, Trenna’s main evening activity was to “slouch on the couch” as she called it, and watch TV through our PVR. She was REALLY expert at using those two remotes. <\/p>\n\n\n\n There gets a point when you are chronically ill, with lots of comorbidities, when lots of medical assistance is frankly, too much. Trenna had lots and lots of specialists, and I thank them all because they all tried to do the right thing. But when you are already weak, and their interventions may only make small improvements (at best), it makes sense to reduce the number of medical interventions. Once we chose to fly business class hoping it was better for Trenna. The extra room probably did help but she couldn’t get the full benefit of the seat and the entertainment facilities. Read the full story here<\/a>.
Hand written notes about a cardiologist appointment. This one from 2006. Once Trenna got an iPad all the doctors notes were done on tha<\/em>t.<\/p>\n\n\n\nA doctor visit companion<\/strong><\/h3>\n\n\n\n
Sheepskin on the seat and seatbelt<\/strong><\/h3>\n\n\n\n
Some sheepskin on the car seat and some on the seatbelt for added protection.<\/em><\/p>\n\n\n\nInflatable cushion<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nSinging<\/strong><\/h3>\n\n\n\n
Speech therapist, occupational therapist, physiotherapist<\/strong><\/h3>\n\n\n\n
Munro shoes<\/strong><\/h2>\n\n\n\n
PayPal Refunded Returns<\/strong><\/h3>\n\n\n\n
Search and destroy<\/strong><\/h3>\n\n\n\n
Training doctors<\/strong><\/h3>\n\n\n\n
Volunteer work where they don’t know you<\/strong><\/h3>\n\n\n\n
A thank you card from the students of one of the classes. Most had a very limited ability with English.<\/em><\/p>\n\n\n\nRecord keeping, diaries etc to keep distracted<\/strong><\/h2>\n\n\n\n
Horse riding<\/strong><\/h2>\n\n\n\n
Trenna on the horse. The instructor is wearing a back pack containing Trenna’s oxygen supply, because by 2020 Trenna was on oxygen full time.<\/em><\/p>\n\n\n\nWater physiotherapy<\/strong><\/h3>\n\n\n\n
Home INR machine<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nCustom made wheelchair<\/strong><\/h3>\n\n\n\n
Home modifications<\/strong><\/h3>\n\n\n\n
iPads<\/strong><\/h3>\n\n\n\n
Still participating in decision making and where possible physical things<\/strong><\/h3>\n\n\n\n
Cannabis and diazepam to help sleeping<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nHaving an exit plan made her feel a lot better<\/strong><\/h3>\n\n\n\n
Telling people NO<\/strong><\/h3>\n\n\n\n
Coloured pipe cleaners<\/strong><\/h3>\n\n\n\n
Bright pipe cleaners were used a lot. In this case, orange meant accessories for her camera. The orange on the bag made it easier to find it in a dark drawer, and the orange on the cord, held it together plus made it easier to find inside the bag.<\/em><\/p>\n\n\n\nPOTENTIALY having clothes made for her<\/strong><\/h3>\n\n\n\n
Only use natural fabrics – but that did limit choice<\/strong><\/h3>\n\n\n\n
Take photos<\/strong><\/h3>\n\n\n\n
And organise photos carefully so you can find them<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nHome hairdresser to wash hair<\/strong><\/h3>\n\n\n\n
Hot and cold fan<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nWhen young, she lay on her stomach<\/strong><\/h3>\n\n\n\n
Recce-vite<\/strong><\/h3>\n\n\n\n
Blanket raiser<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nApple Watch<\/strong><\/h3>\n\n\n\n
Trip to Japan to try a mid length trip<\/strong><\/h3>\n\n\n\n
Exercises to reduce pain –<\/strong> until she couldn’t<\/strong><\/h3>\n\n\n\n
Not lifting anything weighing more than 2 kg (about 4.4 pounds)<\/strong><\/h3>\n\n\n\n
Pain killers (though it isn’t all good news)<\/strong><\/h3>\n\n\n\n
Experiment, but keep good notes<\/strong><\/h3>\n\n\n\n
Write down your pills as you take them<\/strong><\/h3>\n\n\n\n
Desk rider<\/strong><\/h3>\n\n\n\n
<\/p>\n\n\n\nDon’t forget your friends, and don’t forget it can be hard for them<\/strong><\/h3>\n\n\n\n
And Some That Didn’t<\/h2>\n\n\n\n
Touch screen buttons and audiobooks<\/strong><\/h3>\n\n\n\n
Badly designed remote controls<\/strong><\/h3>\n\n\n\n
Too many doctors when she was chronically ill<\/strong><\/h3>\n\n\n\n
A snippet from Trenna’s comprehensive medical notes. This one is recording the outcome from a specialist visit.<\/em> He had been trying hard to find things to assist Trenna, but wasn’t having a lot of success as she was so ill.<\/em><\/p>\n\n\n\nBusiness class to NZ<\/strong><\/h3>\n\n\n\n
Find the start button on this when you are blind.<\/em><\/p>\n\n\n\nPain killers<\/strong><\/h3>\n\n\n\n