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Julie's Attic

At home with SMA (space dedicated to my youngest daughter and all those like her)

SMA Treatment Acceleration Act

jemf

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Born in the U.K. now living in Spain.
Married with two grown-up daughters. The youngest (currently age 24) has Spinal Muscular Atrophy type II.
I spend a lot of time at home and my main interests are music, computers, movies, plants and our 2 cats - they're not very compatible with plants though :-)

Please leave comments in my guestbook or blog entries, or if you don't have a Live ID then use the Shoutbox.

1. Don't wish for perfect health. In perfect health, there is greed and wanting. So an ancient said, " Make good medicine from the suffering of sickness." 2. Don't hope for life without problems. An easy life results in a judgemental and lazy individual. So an ancient once said, "Accept the anxieties and difficulties of this life". 3. Don't expect your practice to be clear of obstacles. Without hindrances the mind that seeks enlightenment may be burnt out. So an ancient once said, "Attain deliverance in disturbances". Zen Master Kyong Ho [ 1849-1912]
June 28

The consequence of sitting for too long (part 2)



We finally spoke to the hospital about Karen, who has had continued pain whilst sitting for over a couple of months, and they say the problem is in the piriformis muscle, and is commonly known as the piriformis syndrome. We found that the solution is not in taking anti-inflammatory drugs because she's taken two prescription medications and when she stopped taking them she was right back where she started, so we believe these drugs only attenuate the pain and don't treat the underlying problem, which is a contracted muscle pressing on the sciatic nerve.  Our doctor said that neither should Karen take muscle-relaxants, which are often given in such cases, because she has a neuromuscular disease and uses a BiPAP to sleep. 

The hospital advises us to apply an electric heat pad to the affected area before and after stretching her legs, and that the best stretch is to take the knee of the affected side and press up hard against her chest towards the opposite shoulder - though we have to be careful because her hips are luxated so we don't go all the way over to the other shoulder.  So that's what we're busy doing several times a day, along with the other yoga stretches I mentioned in my previous post, and we also massage her buttocks after finding a very professional video in youtube; it had never occured to us to massage her with your fist and this problem needs deep tissue massage.

What with all the stretching, massaging, and waiting for the heat pad to do its job, we are quite busy, and she also has to rest lying down because then she feels no pain and tries to read with a book propped up on her chest, but has to call for us to turn the pages.  She misses all the time she used to spend on the computer and her multi cyber activities - very frustrating, apart from having to use a heat pad in the midst of  hot summer.   It's a very slow process, but she says that now she doesn't feel the pain go down to her knee, which I suppose is something to be happy about.

We have been looking at alternatives to prescription anti-inflammatory medication and we're trying Harpago and Bromelain.
 




May 14

The consequence of sitting for too long

At her present 24 years of age, and sixteen years after her operation for scoliosis, Karen is starting to have periodic pain in her lower back, but as they say at the hospital; if the pain goes away after taking an analgesic or resting, the problem is muscular and not a complication of the spinal fusion they performed on her years ago, though since then and in spite of the operation, the scoliosis has advanced.

Whereas up to now the pain has been in her lumbar region, a few weeks ago it moved down to her right gluteus or buttock (the side to which she leans) and sitting down for an extended period of time is painful;  however, as soon as she lies down it improves.  So we have been consulting our friend Google and come up with lots of interesting pages about gluteal pain and the trigger points that cause it and we've come to the conclusion that, as she sits for so long, one of her gluteal muscles has been affected.  We also found a very informative video in youtube and we're doing passive exercises on her based on that video to try and stretch the muscles, apart from recommendations from our physiotherapist like lying on her side in the fetal position with her knees up to her chest as far as possible, but all very gently as any rough movement would hurt her, apart from having to be careful with her hips as one is completely dislocated.

She still takes analgesics and has to stay lying down a lot more - very frustrating for a young lady that usually spends most of her day in front of the computer.

We also still massage her with the strong-smelling ointment that so upsets my cat, and though the cat doesn't go quite as mad now, it seems to turn her on for a few minutes because she licks Karen if she can and then rolls around, almost like she was on some sort of drug.




April 22

Another Spanish Easter over with

When I was a child, my mother "encouraged" me to go to the local church (C. of E.) with her at Easter because she felt sorry for the young clergyman and his lack of congregation, and anyway, she herself had been "taught" to go to church by her mother and that was the proper thing to do.   I remember sitting on the fusty pews in an atmosphere much colder than the outdoor one listening to a boring, endless sermon while my eyes roved over the stained-glass windows and I waited for the psalms to start, because that was the highlight of the whole thing as far as I was concerned, wishing the psalm was a decent-enough one to sing, whilst in front of the altar were offerings of fruit and flowers - I never did know what happened to them.  When we got back home, things were back to normal.

Here in Spain, with a Socialist government and 34 years after the death of Franco, the Catholic Church still tries to play a heavy hand, though depending very much on the region of the country.  In Andalusia it is common for the fervent to devote most of Easter to processions, "the living Passion of Christ", carrying heavy carvings of their idols on their shoulders round the local streets to the applause of the public.  They often actually pay to carry them; enough to give you a hernia or lumbago at the least;  last year it rained a lot and they cried real tears because they couldn't take their particular version of the virgin out on parade or she'd get wet.

Here in the north of Spain, such fanaticism is not omnipresent but if you dare switch on the television you are bombarded by endless repetitions of old films about Romans and Christ.

On a lighter note, the majority of people make a mass exodus to various destinations, blocking the motorway exits to the cities, then have to queue their cars up again to get back in to the city a few days later.

We ourselves just had a nice quiet rest.





April 01

She-cats have a temper

Last night both cats were in Karen's room accompanying her, one on her bed and one on the chair, and when it was time for Karen to go to bed first I took our lady cat out and placed her in the living room (we close the door on them at night;  you don't hear anything but the next morning the furniture is full of paw marks and cat litter is scattered over the floor) and went back for the boy cat.  Mika, our Black Beauty, had decided to go back in the bedroom while I was doing that, so after leaving Leo, the boy, in the living room I had to go back for her again and put her down next to him. 

She immediately hissed at him and then lifted a paw and smacked him.  She'd decided to take it out on him. His face was "what have I done?".  She-cats certainly have a temper.

                        Leo is so cute





Cats and scents they dislike

A bit of background about cats and scents.

Cats can be very curious and interesting creatures. Understanding a cat's sense of smell and the things that are unpleasant to it can go a long way towards explaining much of their strange behaviour.

Cats posses a special scenting device known as the Jacobson's organ; this organ is connected to the brain centre responsible for sexual and aggressive behaviour. In addition to this organ, cats also have over 200 million olfactory cells. There are a variety of scents that cats seem to strongly dislike and one of the most commonly known is the smell of citrus. All cats will exhibit unique preferences for smells as well as tastes and what one cat strongly detests, another may not mind.

Well, the other day Karen had backache and decided to lie down for a while on the sofa.  Before doing so I massaged her back with an anti-inflammatory ointment and then went into the kitchen from where, a couple of minutes later, I heard her shouting at my lady cat.  I dashed out to see the cat had gone mad, was on top of her and trying to bite her in various places but basically, trying to get at her back.  I grabbed the cat and, although I had previously washed my hands, she took great interest in smelling them.  She is usually a relaxed, sleepy, placid cat, but that ointment had obviously driven her crazy.  I looked at the tube and, amongst the ingredients, I saw Camphor and Menthol.  I admit it smelt strongly even to me, but the cat must have been bombarded with the smell to act like that.  However, there was no reaction from our young male cat but maybe he was too far away.

Either we change ointment or we have to use it when we go to bed, otherwise our Black Beauty (though she's blue here) will go crazy again.





 

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