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November 30, 2016 / juliasdiary

Edition 52: November 2016

As this year draws to a close, there are many of us that cannot wait to say goodbye to 2016. There has been so much upheaval and so many surprises, both globally and locally. Julia has also had many extreme challenges this year and is feeling the same way. Despite this, she is currently in a very good place. She has conquered so much with such resolve and purpose that one day we may look back and say, “2016 was a blessing in disguise.”

It started in March when her service dog was due to arrive; the day she had been waiting for with great excitement and anticipation for so long. None of us are sure of the reasons for what happened next. The day Emma, the dog, arrived with Maxine, the trainer, Julia started to behave in a very weird manner. Without going into details, we had to hospitalise her in the middle of the night; she had not slept for two whole days; she seemed to be having hallucinations and was certainly out of touch with reality. The diagnosis was a psychotic episode. The psychiatrist has some theories regarding the cause but all of it is conjecture; the complicating factor of being cerebral palsied, being overwhelmed by the responsibility of the service dog combined with her anti-depressants are possible reasons. All of us in the family simply wanted our old Julz back; that chatty, chirpy, sometimes tactless and often loud character.

Unfortunately the dog had to be passed on to someone else because she was in no condition to manage her. The good news is that in the short time Emma was with her, Julia managed her well. Now she has confidence in her abilities so when another dog is available, she will be fine.

Her recovery was to be fraught with difficulty.

She was stabilised then discharged on different medication. One of the meds gave her uncontrollable shakes so, a month later, it was back into hospital to correct that. She then had a severe and rare reaction to the next med they tried. Thank goodness the doctors picked it up early enough as it triggered a reaction called Stephen Johnson Syndrome. This syndrome can be fatal if not diagnosed soon enough and only occurs in 0.07% of people on this medication. Julia was so weak, so ill; it was frightening. I was not sure if she would make it and nor was she. She even gave herself up to God when she was alone in her ward by saying silently, “Take me now if you need to, and just let my family know that I am at peace.”

Now we joke about how she kicked Stephen Johnson in the butt and survived a “deadly rash”. It took at least 3 months for her to recover her strength. For all that time she could not get herself on the toilet or into her wheelchair or even shower herself. Luckily, her marvelous caregiver, Selinah, and her equally marvelous boyfriend, Gwillym, have been pillars of strength during this difficult time. Most of all, she has had to fight on through it all and has done so with great fortitude and courage.

She has a renewed vigour for life and is ready to take on new challenges. She is currently teaching English First Additional Language to adults studying for matric. She volunteered when she discovered that they had no English teacher and no resources to pay anyone. This is mutually beneficial as she is receiving much needed stimulation and interaction with other adults and they are receiving help with their studies.

To all of you who may have had difficult times, may you have a blessed Christmas or festive season, whatever your denomination. Say after me: Bring it on, 2017!

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November 19, 2015 / juliasdiary

Edition 51 – November 2015

Julia held her housewarming in August once all the renovations had been completed. Before this happy day dawned, she had spent some time in hospital. As discussed in the last diary instalment, the stress of the extensive renovations which disrupted her routine was too much for her. Added to the disruption was the fact that she injured her left wrist. For Julia, this is tantamount to having her hands amputated. Her right hand cannot be used very much at all so she is very reliant on the left.

Julia has always crawled around at home to get from room to room. She usually crawls into the shower too which is difficult because showers usually have a high lip at the entrance. This is exactly why we decided to enlarge the bathroom and ensure the shower entrance was obstacle free. With her left wrist injured this became almost impossible. The best cure for a wrist injury is rest but when it’s the only working hand you have, it’s a little tricky.

Being hospitalised was a blessing in disguise; an orthopaedic surgeon referred her to an occupational therapist who specializes in wrists. This is when at the age of 28, Julia had to confront ageing. Several different sources reveal that adults with cerebral palsy experience premature ageing which begins in the twenties and thirties.

Wendy King, the OT told her that she must stop crawling around and must rather use her wheelchair more else her left wrist would be so damaged by the time she is forty that she will lose the use of it. The weight she has put on in the last few years has not helped either. She also made her two customized braces to wear; one hard and one soft. Wendy also phoned me and told me, we have to ensure that the heights of her bed, toilet, basin, shower rose etc must be as low as possible. This was timeous information as the bathroom was still in the throes of being fitted. We had asked for everything to be lowered but not as much as Wendy recommended.

This has been a wake-up call for us and we realise that she must see an occupational therapist on an annual basis from now on. Fortunately this house is spacious enough that she can use her electric wheelchair to get from room to room. One of her favourite tasks now is taking her own plate back to the kitchen. She is doing very well at the moment; her wrist has healed; she has lost some weight and is even getting into her electric wheelchair on her own now.

I have included some sections on Ageing in Cerebral Palsied Adults copied from the Disabled World website. As health care in childhood improves, there are now more adults with cerebral palsy and it is important that we are all aware of the specific challenges of this phase.

Do Adults with Cerebral Palsy Face Special Health Challenges?

Premature aging
The majority of individuals with cerebral palsy will experience some form of premature aging by the time they reach their 40s because of the extra stress and strain the condition puts upon their bodies. The developmental delays that often accompany cerebral palsy keep some organ systems from developing to their full capacity and level of performance. As a consequence, organ systems such as the cardiovascular system (the heart, veins, and arteries) and pulmonary system (lungs) have to work harder and they age prematurely.
Post-impairment syndrome
Most adults with cerebral palsy experience what is called post-impairment syndrome, a combination of pain, fatigue, and weakness due to muscle abnormalities, bone deformities, overuse syndromes (sometimes also called repetitive motion injuries), and arthritis. Fatigue is often a challenge, since individuals with cerebral palsy use three to five times the amount of energy that able-bodied people use when they walk and move about.
Pain
Issues related to pain often go unrecognized by health care providers since individuals with cerebral palsy may not be able to describe the extent or location of their pain. Pain can be acute or chronic, and is experienced most commonly in the hips, knees, ankles, and the upper and lower back. Individuals with spastic cerebral palsy have an increased number of painful sites and worse pain than those with other types of cerebral palsy.
http://www.disabled-world.com/artman/publish/health-challenges.shtml

July 29, 2015 / juliasdiary

Edition 50 – July 2015

There is a light at the end of the tunnel. Julia’s move into the house has been a tragi-comedy of errors and setbacks interspersed with great joy.

One thing any parent of a person with cerebral palsy probably knows is that change is particularly difficult. Everyone struggles with change but this struggle is far more challenging for those with cerebral palsy.

According to research these are a few of the common reasons for change that apply to everyone but are greatly intensified in many people with cerebral palsy.

  • It’s unknown–One of life’s greatest fears is the unknown. It causes us to resist those things for which we cannot predict an outcome.
  • It’s challenging– Change stretches us out of our comfort zone.  Some of us cope with being stretched less than others.
  • It’s uncertain– When we change, we are often introducing untested waters.  We prefer certainty.

It is obvious to me that because Julia does not have control over her environment, she feels more vulnerable and is invested in controlling the things she can control. A mobile person can more easily adapt to an unfamiliar environment. A mobile person does not need to rely as heavily on routine. A mobile person has more experience of engaging with the world physically. Furthermore, Julia does not like to be reminded of her disability. That might seem odd to some but, in truth, we are all so used to Julia, we do forget about her disability. Her world is constructed around her to enable and empower her as much as possible. When she cannot do things, it reminds her of her limitations.

Moving to a new house is known as one of the biggest stressors in life; packing up, arranging a removal company, worrying that your treasured possessions will survive, ensuring electricity and water supplies are connected, deciding where all the furniture should go; the list goes on.

Of course, there are also joys and benefits. The house is fairly spacious so she can move around in her electric wheelchair at home. This is very empowering; instead of asking people to take things to her, she can fetch them herself. We built a ramp so that she has ease of access and she was delighted on the day it was completed. She could drive her wheelchair from inside the house, out the front door, down the ramp, round the side of the house and go inside via the back door into the house. She was so delighted at this that she did it over and over again.

The problem came with the renovation of the bathroom; this required complete re-design and would take up to 8 weeks; it is only now nearing completion. At the same time, she injured her working hand by tearing a tendon in the wrist. This was very difficult as not only was she in pain but she could barely do anything for herself. On top of this, the noise of drilling at home meant she could not even watch her beloved tennis in peace.

Both of us were beginning to wonder if we had done the right thing in moving. In hindsight, I think we should have completed all the alterations before she moved in, though this was also complicated as the person who bought her flat needed to take occupation.

Fortunately, this is all coming to an end and she is beginning to enjoy her new home after 3 months of stress. We all enjoyed watching the Wimbledon tennis final and having a braai at her house.

P.S. Next instalment, I will write about her wrist and how it healed.

April 23, 2015 / juliasdiary

Exciting times are ahead for Julia and her household.

They are moving from her flat into a house. This all began with a random comment that Julia made on Facebook.

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Sometimes I think I’m a terrible mother because I had not even known it was one of her dreams.

Julia and I then chatted about it. I said to her I would be willing to support her move to the house but I did not want to be involved in the hunt at all.

I gave her a budget within which to work and told her she had to do it all. Contact the estate agents, view all the properties and leave me out of it until she had a property that she believed to be right.

She also contacted the Association of Guide Dogs for the Blind and established the requirements. It is this association that organises service dogs for people with disabilities. It is quite a rigmarole and there is a two year waiting list. I imagined it would take Julia quite a while to find the right house as her budget was tight. I thought to myself that it would be an empowering project for her and that as we do not have to rush, we could bide our time until a bargain cropped up.

Of course, I forgot that this is Julia we are talking about! Put Julia on a mission and things happen. She found a wonderful estate agent who fully understood her needs and they went at it hammer and tongs until they found a place that she loved. I was in Mozambique at the time without much internet connection or cellphone signal. Somehow we managed to discuss it and we agreed that she could make an offer with certain conditions, one of them being the sale of the flat.

Again, I thought this might take a while and scupper the deal. This did not worry me too much as then the project would continue. Wrong again; flat sold within a week! There are some adaptations that have to be made; then chances of buying anyway in the older part of Durban and not having accessibility issues are very slim. We are building a ramp and adapting the bathroom which is another reason I am pleased it was a bargain!

Of course , there are downsides to a house such as security being more of a concern and maintenance being for our own account but my view is, if it does not work out, we will change again. Nothing ventured, nothing gained. Also, apart from the practical benefits a service dog will offer Julia, I think it will be wonderful for her to have a constant companion. She spends a lot of time alone.

And second best thing about having a house for Julia? She will be able to have braais

November 5, 2014 / juliasdiary

Edition 48 – November 2014

As it is people with disabilities experience immense ignorance and insensitivity from the general public but it is somehow worse when government officials or business people display this ignorance. Should those in government not have to attend courses in which they learn more about how to treat those who are, essentially, their customers? Especially if the government department in question is the Department of Social Development; after all this is the department that deals with social grants.

Julia, despite living with cerebral palsy and using a wheelchair, is intelligent and competent in dealing with her own affairs. Many people do not realise this because they make the assumption that disability affects one’s cognition. While this might be so in some cases, it certainly is not in all cases.

Julia and her boyfriend were mugged a few weeks ago; her wallet was stolen and with it her SASSA card. Her caregiver took her to the Department of Social Development to arrange for a replacement. Then the nightmare begins; being mugged was mild compared to this ordeal. They refuse to talk to her but talk to her caregiver; when both of them told these officials that they should address Julia directly, they refused saying that the caregiver is the one who brought her in so they must speak to her. This is nonsense and makes her feel as if she is not a person. Her caregiver is there to assist her not them. They also spoke in Zulu so my daughter did not understand everything they were saying.

What made it worse is that they were not helpful or efficient in explaining what was required. She has no utility bills in her own name and therefore no proof of address. They could not give her an alternative solution without much to-ing and fro-ing. Eventually after hours of this, she acquired an affidavit from the police station and only then did they tell her that she also needs 3 months of bank statements. Could this not have been explained in the beginning? Then they could have collected those while to-ing and fro-ing. It is difficult enough living with a disability without having to be stressed out by the very people who should be assisting.

The cherry on top was that throughout this confusion, the men constantly flirted with her caregiver and tried to get her to give them her phone number. This is downright sexual harassment and should be stamped out. She often has to deal with this sort of unwanted attention from policemen, security officers, bus drivers; you name it.

I understand that in some cultures, family members of a person with a disability do all the talking and arranging. This might be because families themselves have to learn how to empower the disabled family member. Nevertheless, the officials should be trained in how to deal with all types of people. They should be encouraging family members to allow their disabled to speak for themselves, where this is possible.

Remember if someone is in a wheelchair, do not assume they are incapable of conversing with you; ask them questions directly and do not converse with the person pushing their wheelchair as if they do not exist.

P.S. I sent a version of this to The Mercury but they declined to publish it. I was not informed why – perhaps it’s not a ‘sexy’ topic.

July 8, 2014 / juliasdiary

Edition 47: July 2014

Accessibility is one of the disability issues that constantly plague all of us who either live with a disability or are connected to someone who does.

I seldom take Julia anywhere without first checking out the lie of the land.

The other day we went to movie at Gateway’s main cinema. I had booked online as usual; that is the best way to ensure I can secure the seat next to the wheelchair space. The first difficulty was pushing Julia up to the cinema as the passage is on an incline. I arrived in the cinema puffing and panting (yes, I should be fitter, I know) only to find that the seats were at the top of a flight of 3 steps and the wheelchair space was at the bottom. Not only did this mean that we could not sit next to each other but it also meant that Julia could not see over the top of the chairs in front of her. She is not particularly short and sits on a cushion; no-one, other than a Springbok lock perhaps, would have been able to see over the high-backed chairs. We moved to another row and she sat in the aisle. Luckily it was not full. What thoughtless design!

Her flat has its own accessibility challenges. There is no intercom and visitors have to phone the flat dweller who then has to leave the flat to open the entrance gate, as well as go downstairs to open the door to the foyer. Julia cannot do this so she has to hand out her keys to people who want to visit her when Seli is not there. The door and security gate to her individual flat was also impossible for her to open and lock herself.

I cannot do anything about the entrance gate and foyer but I could at least sort out her flat entrance. I had a new door and new security gate fitted, both of which have a remote locking system. So she can sit on the couch and click the button to let people in. When her and Seli leave or enter the flat she can unlock the doors herself. She really loves it. She feels empowered and it also makes things a little easier for Seli. I feel more relaxed because it has always worried me that she could not get out of the flat on her own if something happened, such as a fire or something similar.

April 1, 2014 / juliasdiary

Edition 46: March 2014

Challenges abound in life and when living with a disability, even more so!

Julia is very lucky to have a wonderful carer, Selinah, who has been with her now for almost 3 years. Selinah was informed in December that she had to have a serious operation. As well as being a huge worry and stress for her, we also had to come up with a plan for Julia.

Julia has been amazing at handling this. In case you do not know this, many people with cerebral palsy vehemently dislike a disruption to their routine. Yes, we all do but for Julia it is an almost pathological dislike. I find this perfectly understandable; she has so little control over many aspects of life so has a greater need to control the things she can control. It makes life a little more predictable.

I had to laugh the other day when visiting Julia. I sat on the couch and picked up a magazine from beneath the coffee table, paged through it and popped it down on top of the coffee table. I also arranged the scatter cushions to be more comfortable. I was about to leave when she requested in a very firm tone, “Mom, please put that magazine back where you found it and the cushions too!” I was surprised that she even noticed and felt a little sheepish at my cavalier attitude towards her possessions.

Needless to say, a major disruption, like Seli being away for at least a month, is in another category altogether. Seli has a driver’s licence and takes her to swimming, to the bio-kineticist, to the doctor and also does the shopping, cooking and cleaning. She is also good company for Julia and they are very close.

Julia thought about all the things that needed to be done in advance. Lungile, who stands in for Seli when she goes home once a month was available. She comes every day to help Julia with her activities of daily living. Julia’s sister, Lesley, and I go to her flat on alternate days to give her supper. Julia and Seli planned the meals and Seli cooked up a storm before she left so all we have to do is warm up the food. This has been a great help. Lesley and I are also trying to get her to swimming when our lives do not get in the way. Quite a logistical exercise!

We are into our third week now and we are managing well. Julia is putting on a very brave face but I know how difficult this is for her. Well, I don’t know actually. I cannot know but I can imagine.

I decided to ask Julia to explain it to me. This is in her own words: “Seli knows how my brain works so I do not have to ask for things. For example, I don’t have to constantly remind her how to do things; she does it how I want it done even if she doesn’t like doing it the way I do – like washing and drying me or only washing my hair when I want it washed.

She never makes me wait; for example, the other day I waited for you to get off the phone while I was hot and sweaty.

I don’t wait for food; I get it when I want it – not too early and not too late.

I don’t feel an overwhelming sense of guilt as she gets paid for it.

I feel I can use her as a sounding board if I’m frustrated about day to day life whereas I can’t always use you guys because it then becomes too much for everyone. So the little things in life become very hard to deal with because I have nowhere to put the frustration.

Last thing; we talk a lot, mostly about silly things but she makes me laugh and I don’t smile as much when she’s not around. We can talk for hours so I miss that.”

I found this very illuminating. “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow” ~ Mary Anne Radmacher~