Back home to start new life

I've been discharged from Canossa for just over a week now after being there for six weeks. I'm gradually getting used to my new life. I'm feeling much better now that I've accepted I'm now disabled. I will now concentrate on those things I can still do and "let go" of those things I can no longer do, just remember them fondly without getting upset. This has been a very difficult year for me and for those who love me. My leg weakness was initially diagnosed as being a very rare auto-immune disease, CIDP, and I underwent uncomfortable treatments for that. In August when another opinion said I had spinal cord damage, I went through a terrible emotional time. There was no explanation for this damage. A later opinion was that it was probably caused by a virus (in the absence of any other medical evidence) and I was told it is "unlikely" I will walk independenty again. I have a lovely new wheelchair to help me get around and I will no longer put my life "on hold" waiting to recover. I will get back into my oral history interviews and already have a couple of good prospects lined up. Canossa was the best "treatment" I could have had. The staff there looked after me very well and helped me come to terms with my disability. They were all so good to me. Thanks to them I feel I can now move forward with my life.

Canossa Hospital

I've been "rehabilitating" at Canossa Private Hospital, Rehab Unit, for a couple of weeks now. The staff are all wonderful and I'm enjoying the physiotherapy. I'm allowed "leave" during the day on weekends, on Saturday after physio session and on Sunday as there is no physio. I'm under the care of a good doctor who seems curious about my "unusual" case so he's trying to find answers, but he's said it's "unlikely" I'll walk independently again. But who can say - doctors can't tell me how this has happened and they can't really know what the future holds for me. I'll just take each day as it comes. I believe I've come to terms with my current situation and that acceptance will make it easier to cope, I think. I've got wonderful support from my family and friends, so I'm truly blessed.

Life Member OHAA

At the Annual General Meeting of the Oral History Association of Australia (Queensland Inc.) this morning I was surprised and honoured to be made a Life Member. I have been a member of OHAA for many years and on the Committee since 2001 as Newsletter Editor and also Secretary. The only position I now hold is Secretary and that keeps me very busy and that's what I need. I consider I am in illustrious company with some of the "greats" in the Australian oral history world and I am pleased to be now in that select group. I will continue to do my best to promote oral history as it is something I am passionate about.

European Windows

At a recent camera club competition I entered my audio visual. I was up against some stiff competition from the best photographers in the club so didn't get a place. Unfortunately, I wasn't able to be there on the night so didn't experience the audience reaction or hear the judge's comments personally. However, friends who were there gave me some feedback on how I could improve it so I've taken that on board and changed it. View it on full screen and make sure you've got the sound on. Hope you enjoy it.

Brain & Mind Institute

A couple of weeks ago Terry and I flew down to Sydney to the Brain and Mind Institute to see an eminent professor of neurology for an opinion on my condition. He examined me and ordered tests be done at the Institute by a neurophysiology technologist. They were interesting. The first was in a darkened room with a computer screen showing black & white squares, like a chessboard. I had lots of coloured wires attached to my head and I had to look at the screen as the program began. The squares changed at different speeds from black to white and back and I had to concentrate on keeping them in focus. The technologist could tell from looking at her monitor screen when my mind was wondering - very creepy, she could virtually read my mind. It was quite exhausting. Each "run" would last about 2 or 3 minutes with one of my eyes covered. After about an hour of that, I had more wires attached to my arms, legs and head and an electric pulse was turned on. That all went for another hour. We then saw the Professor again and he said I didn't have CIDP or MS but he concluded I have spinal chord damage at waist level which will require further investigation with better MRI. It was a bit of a shock to learn I've been treated for 12 months for something I don't have but also relief. I'll now go on to the next step in this medical "journey".

Lucas' Graduation

Our family was very proud to attend the graduation of my nephew, Lucas, last week. He has a Bachelor of Applied Science in Forensics. Early in his studies, at times he struggled with the workload and the subject matter but he persevered over the years and has done very well. Now comes the task of finding a job (anywhere in Australia) to match his newly learned skills. He is a very nice young man and will work very hard. We wish him well.

TeckoGecko

I'm on the committee for the Oral History Association of Australia (Qld Inc.) and earlier this year we decided to get our own web site. We finally settled on a fairly new company, TeckoGecko Small Business Websites Brisbane, and we have been very pleased with the result. Although this is a new business for them, they have a lot of IT experience and provide innovative ways for getting businesses on-line. As they grow, their services to clients will also expand. For example, they provide tutorials for many aspects of managing web sites and are always on hand to provide additional assistance. They are friendly and professional to deal with and provide training so clients can manage their own sites. As a small not-for-profit association, OHAA also found the cost of setting up our web site very reasonable. And ......... they have the cutest business logo!!

Barbecue by the Dam

We had a lovely barbecue picnic by Wivenhoe Dam last week. The beautiful Brisbane winter added to the occasion - sunshine, warmth, no wind - perfect! Terry cooked steak and sausages on the little barbecue provided, but we brought our own wood - just as well, as that was not provided. It was great to see so much water in the dam after the terrible drought we've had and then lots of rain has brought the dam to life again. Terry had found on the internet that there were disabled toilets at the site on the National Public Toilet Map. What a great service! So there was no excuse not to go for a drive out there. It was so good to get away and do something "normal" like we used to do.

American Impressionism

Last week Terry and I visited the Queensland Art Gallery to see the American Impressionism & Realism exhibition. The American paintings were from New York's Metropolitan Museum of Art. There were a number of Australian paintings shown as well, demonstrating the influence on their art by the Americans of the time. So the exhibition was a treat, combining the best from our two countries representing this era. My favourites of the Americans was John Singer Sargent and Childe Hassam. The beautiful painting of "Mrs Hugh Hammersley" by Singer Sargent was hung on a burgundy wall, a similar colour to her dress. The effect was particularly striking, especially from a distance. This exhibition is well worth a visit.

London Lunch

I was very pleasantly surprised to receive an "Honour' for my photo in the People subject in competition with my camera club, Queensland Camera Group. As we were walking along the Thames in London last July I saw this boy with all the take-away boxes beside him and thought it looked funny. He probably didn't eat it all himself, but it was amusing seeing it all lined up like that.

CIDP

I have Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), a very rare autoimmune disease which has severely affected my mobility. My peripheral nervous system is under attack by my immune system. The myelin sheath which surrounds the nerves is damaged so signals from my brain cannot get through. I cannot walk unaided (use wheelie-walker around the house) and outings are accompanied and in a wheelchair. This disease affects patients in different ways and the treatments are also varied. If one patient responds to a certain treatment, it does not mean another patient will respond in the same way. There is no known cause and the prognosis is uncertain for each patient.

My symptoms began in late July 2008, shortly after my return from a wonderful overseas holiday where we walked everywhere. My legs began to feel "abnormal". I had to think about walking, taking each step, as my feet gradually became numb. I had numerous blood tests, three MRIs, CAT scan, nerve tests but it was some time before my "difficult" case was diagnosed as CIDP. I've been in hospital three times. Currently I'm being treated with Methotrexate and receiving fortnightly infusions of immunoglobulin (IVIG). So far there's been no improvement. I attend hydrotherapy three times a week, which is the only exercise I can now do, apart from walking (dragging or swinging one foot after the other) with my wheelie walker.

I've joined an on-line Yahoo discussion group which has been invaluable in learning more about this rare disease from others around the world who have it. I am optimistic that I will eventually have the treatment that will have me walking again. In the mean time, I try to have a positive attitude and live within my physical limitations.

Haircut

I'm having a "good" day with my illness. I slept well last night, no spasms, and my legs feel "okay" today. I breezed through hydrotherapy this morning, very different to Monday. I visited the hairdresser for the first time in months but was prompted to go when my 89 year old friend, Billie, said to me last week that I needed to go for a "colour and cut" so I would feel better. My visit to the hairdresser was actually easier than I thought it would be in the wheelchair. My wheelchair is actually more comfortable than the hairdresser's chairs and I was also wheeled to the washbasin which bent to accommodate me. So there's really no excuse for not going more often.

My birthday

On ANZAC Day I "celebrated" my 56th birthday. We had beautiful sunny days for the weekend. I enjoyed a birthday dinner with my family. We took some photos, including a few of me in a wheel chair. I will hopefully look back on these photos next birthday and remember this time when I couldn't walk, but I will be walking then. I am now having fortnightly IVIG treatment so look forward to having some improvement in my walking.

Hospital

Last week I spent a week in hospital for treatment of my CIDP using intravenous immunoglobulin over five days. The treatment was fairly comfortable though getting the canula inserted was not a pleasant experience, but of course necessary. When not being infused with the treatment, I was on a saline drip to keep my vein open so was hooked up most of the time. With my disability, it was difficult when I wanted to go to the toilet or shower, taking the drip with me and being helped on to a toilet/shower chair on wheels by two nurses. At times they were all very busy and I was desperate but fortunately no "accidents". The staff at the hospital were very good but there are not enough of them to cope sometimes, especially in the mornings. The food was quite good. I was glad to return home because in hospital, understandably, the patient fits in with the hospital routine which doesn't always coincide with your own body routine. I will have follow up treatments as a day patient and hope to see some improvement in my condition in about a month.

Another merit

Last night I was very pleased to receive a "Merit" for my latest QCG club competition, the subject being "Music". My photograph "Harmony" is of my violin teacher, Susi, who very kindly and patiently posed for several photos, even though she said she was "not photogenic" (I disagree). I am happy with the photo and more so that the Judge deemed it worthy of a merit.

Slumdog Millionaire

Terry and I have been to see Slumdog Millionaire which was an excellent movie. We'd planned to see it some time ago, before it won the Academy Award, as we'd both enjoyed Q&A, the book on which the film is based. Set in India, a young man is on the brink of winning the top prize in a "Who Wants to be a Millionaire" type quiz show when he comes under suspicion. Authorities and the game show producers cannot believe the young man could possibly have known the answers to the questions and believe he must have cheated somehow. The film then looks back on his life and reveals how his life experiences brought him the answers. Finely acted, beautiful scenery, confronting, great music. This film is highly recommended. Also one of the great things about this outing - we went to the Eldorada cinema at Indooroopilly. They have excellent disabled access and the staff were friendly and helpful.

Toenail cutting

One of the things that highlights my current disability and lack of independence is that I now need my husband to cut my toenails. He is my official "carer" 24/7 and does almost everything for me, for which I am very grateful but wish it wasn't necessary. He does all the cooking, housework, washing, ironing and he helps me dress and shower. Fortunately, I can still use the toilet on my own, but is toenail cutting one step up from that? Despite my disability, I am doing my best to keep a positive frame of mind but at times it can be difficult to maintain that mindset. I've been reading Practising the Power of Now and learning to meditate. I had always been an independent person in control of my life so that loss of control is the hardest to manage and I have to guard against thinking about that and focus only on what I can do - not on what I can't. My neurologist believes I may have both transverse myelitis and CIDP but my case is so complex, I'm not sure he really knows. Anyway, "live for the moment" and "always look on the bright side of life." Cheers!!

Camera Club Photos

I returned to my camera club this month, Queensland Camera Group, after a break and was pleased to receive Merits for all three of my entries in the "Open" subject.

"Marry Me" was taken in Trafalgar Square in London. Terry and I were looking out over the Square and I observed this young couple sitting by the fountain. He pulled out a ring box and handed it to her. She was obviously thrilled and excitedly put the ring on her finger, admiring it and kissing and hugging her new fiance. As I realised what was happening, I took several photos but not all came out well. This was the best. The photo was cropped to show only them. It was delightful to be a witness to this special moment.

"Tangled Web" was taken in Bucharest, Romania and shows that city does not have underground power. There are "webs" like this all over the city and must be a challenge to maintain.

"Gone Fishing" was taken from our boat, "River Duchess" as we cruised down the Rhine River. I spotted this guy on the bank and fortunately with my 20x zoom camera, I was able to capture him.

Click on the Queensland Camera Group link above to see other wonderful images that were in the club competition.

Australia Day

I've never really been that excited about Australia Day but it seems the general populace is becoming increasingly excited about it. This year a newspaper gave out flags to put on our cars. The flag is flown more in people's gardens and there is an alarming increase in nationalism which seems to exclude any race that was not here 200 years ago.

On Australia Day this year, my sister and her husband celebrated their 30th wedding anniversary with an Australia Day party. They met and married in London. This year they shared the day with family and friends and capped it off with an amusing "renewal of vows" and an Australia shaped cake.

Reflections on health

Most of 2008 was a great year with our wonderful holiday in Europe the standout event for us. However, the latter half of the year has not been so good. There are some sayings regarding health "don't take your health for granted", "health is more precious than wealth" etc. and this is something I now very much appreciate.

Shortly after our return from overseas I began to feel unsteady walking and this has gradually led to my now being unable to walk unaided. For outings I'm accompanied, and in a wheel chair. I've had all the tests, scans, hospital treatment to find the cause of this but so far all I know is that I have a disorder "transverse myelitis" which is an indicator of an auto-immune disease but which one is not yet determined. Further tests in the next few weeks may give an outcome.

Being disabled has opened a whole new world. All outings must be planned in advance - is there wheelchair access? I've discovered that people in wheelchairs are invisible so has given me a new awareness.

So you must look after your health as much as you can and enjoy every day because your life can change without warning. I was a fit healthy active person, jogging, walking and now my exercise is reduced to walking slowly in a warm therapy pool.