Thoughts on cross country wheelchair racing

It should be made an Olympic sport... No, really, I'm serious. There is a surprisingly high level of fitness required just to push a bloody chair along a footpath. I should explain. It was so nice yesterday, I asked Jude if she would like to go for a walk. She would, so we did. All the way down to the reserve I usually walk to & back. I was feeling it muchly by the time we got back. You see, I have found out that footpaths have a very gentle slope towards the road & as chairs have castor front wheels, a certain amount of pressure is required to keep the chair on the straight & narrow. I felt like I had had a full body workout by the time I got home, but Jude enjoyed the outing even though she was too tired for her lunch time feed. Apparently, its OK for her to do that every once in a while, so it was a reasonable trade off I thought.

Today, her best friend Di phoned to see if she wanted to go for a walk. Di is always good value. She is an old Patchwork friend of Jude's, a very talented artist, a loyal friend to both of us & a sensible straight talking lady. As she is somewhat older , we loaded Jude into the powered chair. her self confidence has taken a bit of a battering, so she asked me if I would come along too. Just as well. I have noticed that her right arm is getting very weak, but I didn't realise how much. It's now next to impossible for her to operate the joystick with it. I checked & it was an easy thing to swap it to the left hand side, but even though she has a little more use of her left hand still, it wasn't easy for her. Well, you have surely tried to do things with your off hand & you must know how difficult it is. It ended up with her doing what Di laughingly called donuts on the foot path. It ended with me driving the chair home for her. Once again, she was that tired she skipped a meal.

I know there is a variety of joysticks available for her chair but we need to think very seriously as to if it is actually worthwhile to keep it here. For the little bit she goes out. I think a conventional chair may be easier to manageI need to talk to the occupational therapist to see if a chair with bigger wheels might be easier to manage. The other thing worthy of consideration is the possibility that the outings may not be worth the toll it takes on her in the form of exhaustion & missed meals.

Spring time is always a time of hope & growth. All the plants & seeds that I have planted have germinated despite my hamfisted agricultural efforts. We have the Webb Ellice Trophy safely within our grasp despite, what to me, was a somewhat lacklustre game despite the nail biting second half, The oil recovery from the MV Rena is going well & the weather is holding off, the weather is lovely at the moment & the washing is coming in from the line with that sweet fresh smell that only a sunny day & a gentle breeze can give & I'm making headway with the gardens. Surely a time for renewed hope & optimism. I'm certain that if I tell myself that enough I will end up believing it.

They shoot horses don't they ?

I went to the Doctors today. You see, some years ago while in the throes of a mid life crisis, I bought a motor bike. Not a great ravening beast of a Harley, but a modest Honda 25o. I rode one for a while when I was younger, so I guess it was Glory Days. Anyway, the inevitable happened & I fell off. Not at any great speed, about 10 km/h in loose metal to be exact. When I went down, my left foot took the weight of the bike care of the chain sprocket landing on it. I broke a couple of bones in my foot. My first experience of plaster was not a happy one.

Anyway, it's sore again. Quite markedly so. Hence the visit to the Dr. He's from Colorado,. hence the allusion to horses. He reckons its probably injury related arthritis & has prescribed accordingly. This is on top of things like Judes illness & my Mum in a vegitative state due to advanced senile dementia. About 4 years ago, she had to have one of her little toes amputated due to cancer. I was told at the time there was a possibility that it may have spread. Apparently it has. The home phoned the other day to tell me that she has a lump in her groin. So much for her dying peacefully in her sleep. I have made a conscious decision not to go & see her any more, because it is so upsetting & I need my energy & emotional strength to care for Jude. That doesn't mean I don't love my Mum any more, I do, but the dried up little husk that I sit & watch sleep for half an hour really isn't my Mum any more. I don't know where my Mum is. I wish I did. I love her dearly still & find the thought of her dying of cancer is one that I find very distressing.

All this makes it just that little bit harder to get through every day, but I did get at least one bit of good news:- my blood pressure is a very healthy 120 over 80. The pills I take for that go a fair way towards that, but its good news none the less. I hope that I get some good news soon. I don't think I can deal with a lot more bad news.

Progress I guess

It's strange when you think about the word progress. It can mean so many things. In our own particular case, it rests with having a health care system that open handedly dishes out equipment to make our lives easier. I did a mental inventory yesterday. Aside from providing Fortisip, which is literally Jude's life sustainer these days we have, A BIPAP machine, a suction machine, a hospital bed, a motorised wheelchair, an ordinary wheelchair, two commode chairs, one with wheels, one not, a powered patient lifter, a pressure free topper pad for the bed, a transfer seat for the bath (soon to go) & access to a supply of monthly consumables that Jude needs to make her life comfortable. We also have, funded by ourselves, a walk in wet area shower, which makes Jude's life a lot easier. We have a care giver that showers & dresses Jude twice a day & a cleaner that comes in twice a week to give the house a clean up, because as you well know, real men don't do vacuuming.

I'm extremely grateful for all this help. its a double edged sword though. By providing all this gear, it means that Jude stays home & frees up bed space in either a home or a hospital & the staff needed to care for her . That's OK though. There is no way Jude will ever be going in to a home.

Still, I can't help but think of other areas that progress would be nice in:- A miracle cure for MND. Hearing my darling say , "I love you" again. Taking her out for dinner. Sitting in the boat in the middle of the Gulf reeling snapper in. Watching her enjoy her garden again. I could go on, but whats the point. So many things we have both irredeemably lost, yet so much we have both found because of this cursed illness. We have found love & strength that I don't think either of us dreamed possible. I personally am learning a care & compassion that I never thought possible & I am learning a huge respect for the strength & determination that Jude has.

That , I guess, is certainly progress beyond price.

Message for Deirdre

I found you on Facebook, but you haven't got an add friends button on your page. I would very much like to add you to my list of friends. If you are happy with this, I am James Leslie, Thames new zealand. looking forward to hearing from you. For some reason, your setup for comments wont let me post comments on your blog.. Take care , James

Tears & Fears

It's Jude's birthday on Monday. She is basically getting a 3 day birthday out of it. Today, her 2 sons came down to see her, one being able to stay the night, one not. Chris & Mel, as they always do, made a huge fuss of her with flowers, some beautiful sarongs as a present & a lovely birthday cake, which sadly she can't eat. I couldn't sing "Happy Birthday" for her. The tears just welled up in my eyes, but the others did & she loved it. Later on, something happened which I'm not going to detail, that drove it into me how much she is deteriorating. I had to go outside & cry. The little dog of course came with me & sat on my knee for a while gently licking the tears from my eyes. It was one of those truly desolate moments. Mel , bless her, realised that something was amiss & came out & Joined me. We sat & quietly talked for a little while. I was so glad to have someone there to talk to that would just listen & not try to equate what I was feeling with something that had happened to her. Too often I end up doing my crying on my own. Whispa tries very hard to understand, but she is a dog after all.

Sharon is coming down tomorrow, hopefully bringing the kids with her. That will fulfil my wish of Jude getting to see all her kids & grandchildren. Monday, our dear friends Grant & Annette are calling in for an hour or so which will crown a lovely birthday for her.

I haven't brought her a present. What I have been doing though is tidying up her gardens for her. I have done what I think is a very creditable job on the front garden, weeding it, transplanting some Flag Irises & planting out a heap of other plans & seeds. It just about needs weeding again, but I am too scared to until the seeds I planted come to something identifiable. I've just about got the shade house useable again & intend to sort out her sadly neglected orchids there. I've made a start on the garden in the center of the back lawn & still have the rockery to do. Its amazing what you can accomplish in half an hour or so a day, but like the cheese ads say, "Good things take time."