20 Questions with…

I recently got chatting with a lovely lady called Rebecca, who contacted me after reading my blog.

Rebecca, who has cerebral palsy, is high-achieving, ambitious and incredibly interesting to talk to.

Consequently, I thought it would be beneficial for you guys to learn more about Rebecca, her views and how she manages life with a physical disability…


1. What is your disability and how does it affect you?

I have Ataxic Cerebral Palsy, which affects my four limbs and means that I use an electric wheelchair for getting around both inside the house and for outside activities in my day-to-day life. I also have a visual impairment called Nystagmus, which prevents me from going out unaccompanied as I sometimes struggle to see steps and kerbs in the street.  My disability affects my life as I require 24 hour care.

2. What is the worst thing about living with your disability?

The worst thing is the stigma and negative attitudes that still surround disability. For example, strangers often make assumptions about my mental capabilities and underestimate my intelligence. However, I am learning to become resilient through my experience of this, and have developed coping mechanisms.

3. What, if any, are the positives to having a disability?

The free carer ticket to gigs/festivals/theatre/talks is a bonus! I also value my electric chair and the feeling of acceleration when I drive fast. On a more serious note, I view the fact that I feel I have a unique perspective on the world as a result of my disability as a positive. I have a greater tolerance of difference due to the empathy and understanding that my disability has taught me.

4. How do you feel about the term ‘disability’? Do you refer to yourself as having a disability or do you prefer another term, such as differently abled?

I used to physically jump at the word ‘disability’ as well as ‘wheelchair’ and ‘handicap’. This was because hearing myself being described as disabled hit home the fact that other people viewed and labeled me in this way. It made me feel as if my disability was my main or only attribute. This all changed when I attended counseling sessions in my early 20’s, where I was encouraged to unpack the meaning of these words and confront why they prompted a physical reaction from me. It is still the case that disability will never be my favourite word, but I’m now comfortable enough to describe myself in that way to others.

5. Do you feel under-represented in the media? If so, what changes would you like to see?

I can understand why some people would feel under-represented, and I agree changes do need to be made. But in my opinion, these changes reside in discussion, ideas and inclusion rather than purely exposure.

6. Are you a leader or a follower?

I used to be a follower, afraid to voice my opinions.  Now I am comfortable taking the role of the leader in certain social situations, i.e. with less confident friends I am able to guide the conversation to allow people to be heard. As well as this, I hope to lead with my ideas surrounding disability ethics and the research I am doing in this particular area.

7. Optimist, pessimist, realist or idealist?

I live in the most realistic way possible so that I am most connected with reality and grounded in my thoughts. To be too pessimistic can prevent us from progressing, whereas being overly optimistic can also be counterproductive to personal growth.

8. Are you easy going or high-maintenance? Would those who know you best agree?

I would say that I am easy going because I have learnt how to balance my own well-being so as not to allow myself to become too stressed out. Those who know me best would probably agree, but I imagine they would claim that I’m more high-maintenance when I have an important deadline to meet!

9. Are you more of an introvert or an extrovert?

This really depends on whom I am with. In my professional career as a counsellor it is my responsibility to be the facilitator who steers the conversation, and this doesn’t allow for me to be introverted.  However I can still become shy around people that I struggle to connect with on a deeper level.

10. Are you more creative or logical?

I am more creative in my thoughts and my writing and in the way I can construct an argument in a debate.

11. You are currently studying Philosophy at Cambridge University –  why did you choose that subject in particular?

I have been fascinated by the world around me from a young age with my intuitive questioning of values and beliefs. This then developed when I embarked on a short course to find out more about the subject, which then inspired me to study philosophy at a higher level. What I like about philosophy most is that it’s a never-ending endeavour; there is always more to question, learn and explore. Philosophy can help to find new ways to think about old problems and with considering things from different perspectives, to overcome many of the hurdles that we encounter in our everyday lives.

12. What difficulties have you faced whilst at University, resulting from your disability?

Having to deliver presentations has been difficult for me, but luckily the University allowed me adapt my assessments, and have been really accommodating. One of my personal assistants delivered this presentation and I was able to answer class questions afterwards. I also require a personal assistant to write down my thoughts, and this can sometimes take a long time because conversations can be misinterpreted. For this reason, I always request the option of extra time because it can take longer for me than for an able-bodied student to formally express my thoughts in an assignment.

13. What do you hope to do following completion of your degree?

I am hoping to continue studying and develop my qualifications, embarking on a postgraduate course that combines philosophy and mental health.

14. Are you the type of person who always knew, from an early age, what job you wanted to pursue?

Yes, from about the age of 10 I remember hearing of people’s difficulties and wanting to help them by giving them advice at the time! This then developed into aspiring to become a qualified counsellor.

15. What is your ultimate ambition in life?

To gain as much knowledge and wisdom as possible to discuss new ideas and create meaningful change.

16. Bucket list: Can you list your top 5 goals?

I took some time to contemplate this question because I’ve never had a bucket list as such, but I’ve managed to come up with 5 things that are important to me:

 1. Experience something daring in nature – i.e. wheelchair tree-top climbing

2. Using my counseling skills to change someone’s life for the better

3. Learn more about the psychiatry side to mental health

4. Finish reading a book in its entirety!

5. Finish my dissertation

17. If you won the Euromillions, what would you do with the money?

I would first of all build my own custom-made cabin in the forest. I would also double my betting stakes. (I do now and again enjoy a little flutter on the horses and football!) Although overall I am pretty content with my life how it is now.

18. Where is your favourite place in the world?

I really love spending time by the weeping willows in Newnham, Cambridge. These trees overlook the River Cam which makes it a very tranquil spot, where I feel safe and at peace.

19. Do you believe in ghosts, spirits and the like?

I have heard many stories about spirits and the afterlife that have led me to believe, or at least be open to the idea.

20. If a pill existed that could completely cure you of your disability, would you choose to take it, and why?

No, simply because I wouldn’t be me any more. And I wouldn’t have experienced the same things if I had been able-bodied. The only thing I would perhaps alter is the fact that I don’t get to spend much time on my own.


I’d like to thank Rebecca Sherwood for taking the time to answer my questions.

What do YOU think of Rebecca’s responses? how would YOU answer these questions? Leave and comment and let me know!

If you found this blog post interesting, please do share so that others can see it too – thank you!

Interview | Amin Lakhani: The Dating Coach on Wheels

Are you lacking in confidence and social skills? Do you suffer from low self-esteem, struggle to form meaningful relationships or find dating too nerve-wracking a prospect?

Well, if you haven’t already heard of him, allow me to introduce Amin Lakhani, the Dating Coach on Wheels. With hints, tips, and tailor-made “no bullshit” advice, he could be just the answer you’ve been searching for.

Amin, from Bellevue, Washington, has a progressive form of Muscular Dystrophy called Charcot Marie Tooth Syndrome, which presents in overall weakness, particularly the hands and legs. Now 29 years old, he has been a wheelchair user since the age of 15.

He excelled academically, achieving two Ivy League University degrees within four years, progressing onto a successful career at Microsoft. Nevertheless, the Self-confessed “nerd with poor social skills” felt lonely and insecure, with only a few friends and no dating experience.

Finally, at the age of 23, Amin hired a dating coach whom he worked with for around four years. This enabled him to totally transform himself, his relationships and his life.

He’s popular, makes friends easily, has been on over 40 first dates, enjoyed sex and fallen in love. Now the Dating Coach on Wheels, image consultant and motivational speaker is returning the favour.


  1. You became a wheelchair-user at the tough age of fifteen. How did this affect your sense of self and your personal relationships?

I didn’t mind so much at first because I have a huge family and a lot of support. In fact, it was pretty cool because I had this brand new wheelchair and I no longer felt exhausted all the time. Up until that point I could walk a little but I always used elevators and I sort of grabbed hold of the walls and furniture so that I didn’t fall.

But as soon as I started High School I felt different from my peers. I didn’t know anyone else who used a wheelchair, so the fact that I stood-out from the crowd made me really self-conscious. I was lonely, alienated and my relationships became strained because I wanted the impossible: I wanted to get rid of my wheelchair and be the same as everyone else. But of course, that could never happen.

I did have a few school friends but I never had a girlfriend, and was left out of all the usual teen dating etiquette. No girl ever wrote on my locker.

I felt unattractive and thought I had nothing to offer a girl, so I shut myself down. If ever a member of my family asked why I wasn’t dating, I would use the excuse that I was too busy for all that.

  1. Where did you get the idea to seek assistance from a dating coach, and why did you choose that route?

I had tried online dating – the likes of ‘OK Cupid’ and ‘Plenty of Fish’. I was really thorough with my research and looked up what I should and shouldn’t be doing. I was enthusiastic and did everything right according to my research. I was, on paper, a catch. Or so I thought. I was a grade-A student, a high-achiever academically, I had a great job at Microsoft. But it just wasn’t working out for me and that made me feel hopeless. I think my downfall was the fact that I tried to hide my disability from my online dating profiles. I never showed pictures of my wheelchair and never mentioned it. I basically listed my achievements but failed to inject any personality or humour. Had I done this I think I would have been met with a more emotional response. Any response.

I look back now and cringe, but there’s nothing wrong with that. Ultimately it led me to search online forums which is where I found the guy who would become my dating coach. I was 23 at the time and he was doing a workshop called, “Conversation Secrets”. It was then that I decided to get his advice.

Amin Lakhani before
  1. You say a turning point for you was being told, by your dating coach, that you will never blend in but that’s okay; rather you should make yourself stand-out from the crowd. Why did this realisation have such an impact on you, and why do you feel disabled people should aim to stand-out rather than fit in?

Yeah, that really did make an impression on me. I learnt that if you don’t like something you should change it. And, if you can’t change it, you should change your opinion of it. It’s true, disabled people are memorable because of their disability. It does make us stand out. But that isn’t a negative thing.

I do think disabled people should embrace their individuality and dress to grab positive attention. People are going to look at you anyway. By nature, humans are curious and we all check each other out – disabled or not. So, make people look at you and remember you for the right reasons. Make them remember your outfit or your style. If you put the effort into your self-image, you look good and feel good about yourself, people wont pity or feel sorry for you because they wont be focused on your disability.

I also learnt, from my dating coach, that being in a wheelchair gives me free rein to talk to any girl in the world. No one is going to slap, punch or snub a guy in a wheelchair, right? So effectively, I could approach any girl I like and just start talking because even if she’s with a guy, he’s unlikely to feel threatened by me. It’s all good practice!

  1. You clearly pay a great deal of attention to your appearance – the signature bow tie, a pop of colour and an overall minimalist, classy aesthetic. How did you develop your personal sense of style and why do you feel this is so important?

I believe you attract what you project. So, if you want to attract a punky type of person, it’s probably a good idea to shape your image around that look. I now look completely different from how I used to. I changed how I dress and style myself according to the type of girls I’m attracted to. We all need to embrace our individuality, consider what we wear and how we wear it. If we don’t feel good about our own appearance, it affects our confidence.

Amin Lakhani now
  1. Much emphasis is placed on sex, and for some disabled people this can be a cause for concern. How then would you coach someone whose disability prevents them from participating in the physical act of sex?

Okay, first of all, sex isn’t everything, it’s just a small part of what a relationship is. It’s more important to talk, flirt, connect and feel comfortable in each others company.

With regards to sex itself, I have clients explain their difficulties, circumstances and challenges to me. It’s all about individuality. Every disability is different therefore it’s important to consider everyone’s specific situation.

I have two main points:

Firstly, I ask what the client wants. Do they want someone to support them to participate in sex? Or do they want their partner to support them in the act? Either way, it’s essential to do your research and maybe find out from others with the same physical limitations how they approach sex.

Secondly, you’ve got to make it sound fun and exciting for your partner. Tell them what you want in a flirtatious way and make it sound hot and kinky rather than practical. Remember, you’re giving a gift to this person – to your partner. It’s a hugely intimate thing you’re asking and you’re entrusting your body to them.

  1. You have talked candidly about sex and your own personal experiences. Why do you feel it is important to share this in order to help others?

Yeah I think it’s helpful for me to talk about my own experiences with my clients. It enables us to relate to each other. I’ve been through the same struggles myself and so I can identify in a way that an able-bodied dating coach couldn’t.

I offer advice that is sometimes unconventional. For example, I tell people it’s okay to feel like shit when you get rejected or things don’t go to plan. But you’ve then got to keep going, get out there and try again. All experience is beneficial.

  1. It’s fair to say your target demographic is men. Why is this? Do you think men struggle more than women with confidence and making themselves attractive to others?

Obviously as a guy myself, I can relate more to men, although I have had more female clients recently. I have a wealth of dating and relationship experience that allows me to relate and identify with male clients especially.

There is definitely a gap for guys. They just don’t know how to get in the drivers seat. Women want them to take control but in order to get their guy to that place, they themselves have to take control. So a lot of the time I’m trying to help guys take charge.

  1. Can you please explain your working methods to Disability Horizons readers?

As a dating coach I help people build their skills to make themselves more attractive to others. It’s not just about sex and dating, but also forming meaningful relationships and friendships, too.

For the most part I communicate with clients through video calls and we also Email in between. The length of time I spend with a client depends very much on what they want me to help with, and how hard they are willing to work to achieve their goal. I spent up to a year working with one particular guy who is actually able-bodied. He was incredibly reserved in social settings due to a lack of self confidence, and was looking for more than just a few pointers.

  1. What is the one question you are asked most frequently, and what advice do you give in response?

Men want to know how to ask a girl out and how they can tell if she likes him. I tell them there’s no way to really know for sure if a girl likes you back. You’ve just got to rip off the band aid and go for it.

Women mostly ask how to find a guy who’s interested in more than just sex. My response is to learn to say no! Take your time and make a guy work for it. Don’t give it up on the first date as it leaves a bad impression. Inevitably the guy would assume you give it up to all guys just as easily, and that’s not what men want ultimately. We love the chase and value what we’ve worked hard for.

  1. What are your top dating tips for those who are particularly nervous or lacking in confidence?

It’s okay and totally natural to be nervous. I still get nervous going on a date for the first time. It takes courage and courage leads to nervousness; everyone feels it. You’ve just got to do it. No matter what, you have to try. We all have to go through awkward stages and you will probably look back and cringe at yourself and your failed dates – I know I have. But again, that’s okay.

I also recommend bringing up your disability early on, but in a humorous way. Don’t try to hide it, but at the same time, don’t disclose everything in great detail. You don’t need to be 100% emotionally okay with your own disability. We’re all a little insecure about something. Just put your best foot/wheel forward so you can find the people who prioritise things other than their partners physical abilities. These people are a rare breed, so it will take work (and inevitable heartbreak) to find them.

In terms of date conversation: Pauses, I think, are actually a good, powerful thing. They can be sexual and flirtatious, allowing you to lock eyes and check each other out. I am consciously quiet for extended periods when I go on a date. During these pauses I look my date up and down and make it known that I’m checking her out. This lets her know I like her and will probably make her giggle and flirt in return.

Remember not to talk too much and don’t attempt to fill the silences. It can be exhausting as it’s impossible to process all that verbal information quickly.

Do ask questions, but not just typical introductory questions. Become interested in your date and respond to their answers. If they answer a question very briefly, realise that perhaps they don’t want to talk about that particular topic. Dig deeper into what they do want to talk about and tap into their interests.

  1. Do you think there’s a limit to who you’re able to coach, and have you found any of your clients to be especially challenging?

Oh yeah absolutely. It’s all about motivation. If a client isn’t motivated or willing to do what it takes and work hard for it, they won’t get results. At the end of the day, they need to trust me and do what I tell them, no questions asked. I can’t do the hard work for them.

  1. Where do you see your career taking you and what more do you hope to achieve?

I’m kind of happy where I am right now. I really just want to help more people.

I enjoy writing but mostly I love making videos, talking and being myself on camera. So, ideally I’d like to be more active on Youtube. There’s something about being recorded that’s more effective than someone reading something I have written. In a video, you’re hearing my voice, seeing my mannerisms and humour. You’re receiving the information exactly how I want you to. You just don’t get that through writing.

I feel like I was born to do the work I do. All of my personal struggles have been for a reason. I now have a sense of purpose and can make an impact in a way that I couldn’t if I were able-bodied. In that way, my disability is beneficial.


I’d like to thank Amin for taking the time to talk with me.

Please do connect with the Dating Coach on Wheels on social media:

Website

Youtube

Instagram

Twitter

Facebook


*This article can also be found on the Disability Horizons website.

The winter edit: Part 2

5 tips to stay well through winter

The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread. So how can we best prepare ourselves for the months ahead?

We are 80% more likely to catch a cold during winter. Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.

Click here to check out ‘Part 1’, in which I offer my tips to keep warm.


1. Stock up on supplies:
Medication –


• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.

Contacts –

• It’s good practice to have a List of contacts in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next if kin can contact them quickly should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!

2. Nutrition:

• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. So if you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.

• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!

Top foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.

3. Cleanliness:

• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it particularly when out and about or using public transport. It’s a simple way to prevent the spread of germs from surface to surface and person to person.
• It’s stating the obvious but do wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Finally, don’t forget to replace your toothbrush after you have fully recovered from an illness.

4. Physiotherapy:

• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
• I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.

5. Avoid germs:

• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. As a common cold for me can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
• I always wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.


I really hope this was helpful! If so, please share this blog post so that others can benefit too.

I’d love to hear from you – what do you do to stay well throughout winter?

Life Update: Part 2

Carers and my first ceiling track hoist


Hey everyone, hope you’re all well.

As promised, here are the developments following on from my previous life update

Care

Having re-advertised for a part-time carer to replace my current PCA, I interviewed seven applicants, plus one who’s interested in ad-hoc cover. All were enthusiastic, though as any employer will know, things often change in the days that follow.

There was only one no-show which actually isn’t bad at all compared to my previous attempts to recruit new carers.

One of the seven ladies later asked to be a backup as she decided she couldn’t do every weekday. From the six remaining, I invited three to shadow, knowing that at least one would change their mind. I was right; they did.

The first was a no-show (yes, another)! After I contacted her to ask if she was going to attend, she simply replied, “I forgot”. Needless to say she was scrubbed from the list.

Number two messaged me a few days before shadowing, to say she had reconsidered and felt there weren’t enough hours. This left me with one applicant.

Thankfully she did show up. Seemingly reliable and keen to take on the role, I offered her the job on a trial basis from Monday 30th October.

My current PCA is leaving in December to pursue a career as a paramedic. So, fingers crossed all goes well with the newbie…

Ceiling track hoist

To my surprise, I was contacted a couple of weeks ago by Prism Medical to arrange a date for installation. Finally, after waiting for so long and constantly pushing the matter, I would get the much needed ceiling hoist on Tuesday 24th October.

In preparation, my Dad had to remove the glass intersection above my bathroom door to allow through-access.

Before:

After:


When the day arrived, we cleared the room and waited for the workmen to arrive, as expected, at 9am. An hour later and still no sign. Becoming impatient, I called Prism Medical but was told they wouldn’t be coming due to a technical issue.

What?! What technical issue?

Prism Medical claim they left a voice message, on the previous Friday, explaining they couldn’t connect the single rail going from my bed to the bathroom door, with the H-frame in the bathroom. We received no voice message. They also claim to have contacted the Community OT’s. They too have had no calls or messages from Prism.

A rep from Prism previously visited my home to take measurements, draw up plans and provide quotes. They then corresponded with a Community OT (or so I’m told) and agreed to install the ceiling track hoist. Yet despite all this, they have suddenly decided they’re unable to carry out the work. Excuse my language, but what the actual fuck?!

As you might expect, the remainder of Tuesday was spent on the phone: trying to get hold of an occupational therapist, complaining to and about Prism Medical, and negotiating with County Council Equipment Services.

I’m hoping to get funding approval for TPG to do the work, as they too had sent out a rep to provide a quote.

Naturally the County Council opted for the cheaper quote from Prism. That’s worked out really well, hasn’t it!

Final Thoughts

Today is Thursday 26th October. There has been no notable progress since Tuesday. Essentially, I am back to square one – harassing the OT’s daily to ensure my case is not ignored. Unless you constantly pursue the issue yourself, frankly nothing happens.

I am so angry and disappointed with the whole cock-up, though sadly not overly surprised. In my experience, unless you’re prepared to self-fund, this is the service (or lack thereof) you can expect!

I will be putting in a formal complaint and am seriously considering writing to my local MP. If we allow companies and organisations to get away with such failures and blatant disregard, nothing will change.

So, once again the saga continues. I will keep you updated – *Keep an eye on Twitter and my Facebook page*


Thank you so much to each and every one of you who has offered advice and support!

Scoliosis | Why I chose not to have a spinal fusion

In my latest piece for Muscular Dystrophy Trailblazers I explain how and why I chose not to have a spinal fusion as a child.


My experience

I was offered corrective scoliosis surgery at the age of nine. Back then I was able to walk short distances wearing leg splints and had a general diagnosis of congenital muscular dystrophy. Many years later this was specified as Ullrich congenital muscular dystrophy.

I had no idea why I was going to see a consultant orthopaedic spinal surgeon. I was nine! To me it was just another aimless, inconsequential appointment.

There was no faffing around; this doctor was straight to the point. I was told I needed imminent corrective surgery to prevent further decline. I was horrified to hear of the graphic details, the lengthy recovery and how it could even prove fatal.

Of course I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was unexpected news falling on my young shoulders.

How I made my decision

As a child I attended Birmingham Heartlands Hospital annually where I saw a paediatric neuromuscular consultant.

My parents and I were never given a prognosis nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly these appointments frustrated and bored me to tears! We would wait hours – literally, hours – to see the doctor, and would leave knowing nothing more than we did before. I have in all honesty learnt infinitely more as an adult, through my own research, social media and from others with muscular dystrophy.

My point here is that my parents and I had nothing to base our decision on. It’s almost twenty years since I was told I needed a spinal fusion. This was pre-Google and pre-social media. We weren’t put in contact with anyone who had experienced the operation. So, other than a verbal overview from the consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I regret my decision?

At the time, it was, or at least seemed the right decision for me personally. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free and did not require any inhalers, medication or respiratory support.

The procedure then was very different compared to today, and I was very young. My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how my life could have been improved if I’d undergone surgery, two decades ago.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days when I’m in pain and struggling for breath or when I’m ill for months (yes, months) with respiratory infection; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.


I’d love to hear about your experiences with scoliosis and spinal surgery.

– Can you relate to my story?

– Have you too turned down corrective surgical intervention?

– Have you had a spinal fusion? If so, how has your life changed as a result?

Thanks so much for reading, and please leave a comment.

1 Year Old Today! | Blogiversary

It’s now been one year since my blog, Life on the Slow Lane, was created. I finally bit the bullet on 5th October, with my first (proper!) post going live on 11th October.

As you can see from that first shabby entry, back then I lacked a specific objective. I just wanted to get going after contemplating blogging for many months prior.

Over time I have (I hope) managed to focus the aims and purpose of my blog.

I now concentrate primarily on disability issues, specifically those relating to muscular dystrophy. Here I share my thoughts and experiences, having lived my entire life with Ullrich congenital muscular dystrophy.


Blogging opportunities

Over the past twelve months, I have been extremely fortunate to write for other notable publications including Muscular Dystrophy Trailblazers, Disability Horizons and Limitless Travel.

Life on the Slow Lane has enabled me to interact with many other disability bloggers. The amazing Simply Emma generously invited me to guest-blog for her, which I did in May and July. Then more recently I collaborated with the lovely Gemma over at Wheelescapades.


My blogging highlight of the year

A particular highlight for me was the overwhelming response I received for the piece I wrote about my life with UCMD. The fact that it is an especially personal and exposing piece makes the positive feedback all the more touching. To date, this, my most popular blog-post has been viewed over 11,700 times.


Final thoughts

Admittedly, it’s been challenging and time-consuming. I have so many thoughts and ideas, yet not enough time to execute them all.

I often feel like I’m playing catch-up, mistakenly comparing myself to other much more established disability bloggers.

I’m not a big fan of computers and otherwise avoid them if at all possible. Initially, I had no clue how to even set up a blog, let alone edit and customise one.

I realise many of my peers are adept with design software, graphics and managing websites. But I’m just not. Computers are in no way of any interest to me. I’m old school! So this, along with social media, is something I have had to familiarise myself with.


Blogging goals for the next year

• Continue to upload regular posts
• Reach a wider audience and increase my readership
• Raise awareness of Ullrich congenital muscular dystrophy
• Meet other like-minded disability bloggers


Thanks to you

I’d like to thank each and every person out there who has read any of my articles. I truly appreciate your feedback and support!

As long as Life on the Slow Lane attracts an audience, however small, I will continue to write.

Hoists in Hotels | MDUK Trailblazers

Last month Muscular Dystrophy Trailblazers launched their report following an investigation into the need for hoists in UK hotels.

Over 100 Trailblazers responded to the survey, sharing both positive and negative experiences.

This is an important issue that affects the lives of so many disabled people, myself included. Without the essential facility of a ceiling hoist, we are denied the opportunity to travel, whether for work or leisure purposes.

With only 18 UK hotels having installed ceiling hoists for disabled guests, this is clearly an overlooked and ill-considered feature. Who is designing these ‘accessible’ hotel rooms, anyway?!


I was one of the respondents to the Trailblazers survey. Here is my view:

“I am an infrequent traveller, not because I lack the desire but because it is so difficult to find appropriately adapted and affordable hotels. Even getting away for a single night is an almost impossible challenge, since hotel rooms are, disappointingly, not equipped with ceiling track hoists as standard.

Although some people get around this problem by hiring (at an extra cost) or taking with them a portable hoist, this is not practical for all. Portable hoists are cumbersome, difficult to store, transport and manoeuvre. Furthermore, many people simply don’t have access to a vehicle large enough to carry such large-scale equipment.   

I have Ullrich congenital muscular dystrophy and am completely non-ambulant. I can’t safely transfer and so I either have to be hoisted or manually lifted. Understandably most people, excluding family, are reluctant to do the latter. So, if I want or need to get away from home, my only current option is to ask family members if they are willing to lend their time and support (far from ideal).

With less than 20 hotels in the UK equipped with ceiling track hoists, our options are severely limited. For those of us who need this facility, a premium cost is incurred, and then we are restricted to specific locations. Sadly we are not free as others are, to occupy any hotel room in a hotel of our choice, anywhere in the country.”


Click here to find out more information and from other contributors.

Get to know me | Interviewed by Wheelescapades

I recently collaborated with fellow disability and lifestyle blogger Gemma Orton, aka Wheelescapades, on a ‘20 Questions‘ blog post.

We initially got chatting on social media and found we had a few things in common ~ We’re both arty/crafty types, we have a mutual love for all things Disney, and we are both wheelchair users. Gemma has Spinal Muscular Atrophy Type 2 (SMA2), while I have Ullrich congenital muscular dystrophy.

To get to know each other even better, we gave each other free rein to ask 20 personal questions!

Here you can find my previous post, in which I interview Gemma.


And below are my answers to Gemma’s 20 questions…

1. What made you decide to write a blog?

I had been thinking about it for a long time, though it took me several months to begin. I wanted to do something productive and worthwhile but didn’t think anyone would care or be interested in what I have to say.
They say you should write what you know. I have been disabled since birth and so consider this my expert subject. However, disability isn’t a particularly popular or fashionable topic to blog about. I knew it would be a challenge and it has been. I do feel like I’m constantly playing catch-up and at times I wonder if it’s worth the time and effort. But when I receive positive responses from complete strangers, I am reminded why I’m doing it.

2. What do you want your blog to achieve?

I want to raise awareness of muscular dystrophy, particularly Ullrich congenital muscular dystrophy which is the rare and little-known form that I have. I want to share my thoughts and experiences, having lived my whole life as a physically disabled individual, in the hope that it may in some way help others.

3. What is the most difficult thing for you about having a disability?

Blimey, I could write a list! There are many challenges and frustrations. My condition is progressive and so the difficulties become greater with age. I think perhaps, for me, the most difficult thing about living with Ullrich congenital muscular dystrophy, is the limitations it inflicts. I am limited physically – I cannot run, dance, walk or even weight-bear. Just to be able to stand and support my own weight would make a world of difference! I am life-limited! Yes, UCMD is a life-limiting condition. I will not grow old or see my new baby nephew become an adult. Furthermore, my quality of life is limited. To put it briefly, when I am ill I’m REALLY ill. I have spent much time in hospital with respiratory related issues including repeated bouts of pneumonia, pleurisy, and a collapsed lung. I have literally lost months of my life to UCMD – housebound, unable to eat and reliant on non-invasive ventilation.

4. What is the biggest positive about having a disability?

The positives are much more light-hearted! Concessions, being able to skip to the front of the queue and designated parking (although disabled bays are often occupied by sports cars lacking a blue badge!)

5. If you could only eat one food for the rest of your life what would it be?

Hmm, tricky! I do like variety. I guess I’d have to choose… mash potato?! That way I could always mix it up by adding herbs from the garden (or is that cheating??)

6. An apocalypse is imminent, you have 30 minutes to prepare, what 3 items do you pack?

Well, I guess if the apocalypse is coming then it doesn’t really matter as we’re all doomed anyway?! But, I think I would still pack a bottle of Lucozade (I live on it! Purely for the energy boost), my dog and my family!

7. When making tea would you pour the milk or water in first?

Water!

8. What is your favourite way to relax?

I like to shut myself away, snuggle up in bed and listen to music or watch a good film.

9. If you could interview any human, dead or alive, who would it be and what would you ask?

Wow, I really don’t know. God! (who I don’t believe in – what a cop-out) He has a lot to answer for.

10. What would be your dream job?

I’m one of those people who never knew what they wanted to do. I’ve never been career focused or academically ambitious. All I ever wanted was to have kids! But, if I could be absolutely anything, I think I’d be a dancer. I’ve always loved everything about dance. And yes, I’m a huge Strictly fan!

11. You’ve just won 10 million pounds (congratulations!), what 3 things would you do with the money?

Sort my family out – erase any debts and buy them homes, cars and whatever else they might need or want. Make sure my closest friends are comfortable! Buy a holiday home(s). And finally, a home for myself, FULLY adapted!

12. Where in the world would you most like to visit and why?

Australia. For as long as I can remember I have always wanted to visit Australia. The snakes are a little off-putting but still, that’s where I’d head to first. Closely followed by America. I’d absolutely love to do a road trip – Route 66!

13. What one thing would you change about yourself?

Only one?! Again, I could write a list. Buy I’d have to say my body. It doesn’t work too well and I’m flipping uncomfortable in it!

14. If you could play any part in a film, past or future, real or fiction, who would you be?

Men get all the really great roles! So, if I were male I think I’d play the Joker in The Dark Knight. How much fun would that be! Since I’m not a man, I’d play… I don’t know!! Maybe one of the sisters in A League of Their Own (1992) or Uma Thurman’s roles in either Pulp Fiction or Kill Bill.

15. If there was a pill that would freeze you at your current age and you could live forever as you are now, would you take it? And why?

Nope, definitely not. I wouldn’t to live forever. It would get pretty boring after a while! Plus outliving all my family and friends would be Hell.

16. If you could trade lives with one person for an entire day who would it be and why?

My brother. He has the life I’ve always wanted. He is physically fit, handsome, funny, charming, popular, successful and he has a lovely wife, baby and home. Of course I don’t resent him for it and I want nothing more than for him to be healthy, happy and fulfilled. But to experience his life for just one day would be bliss. I’d never ask for anything else.

17. If you could time travel, where would you go?

Good question. There are so many periods throughout history that I’d like to visit. But it would be great to go back around 50 years, when my parents were kids and my grandparents were young. I never knew my maternal granddad who died when I was a baby. So I’d especially love to meet him.

18. If you were made Queen and allowed to pass one new law, what would it be, and why?

Argh, the pressure! I have no good answer to this. So I think I’ll just say longer sentences and harsher punishments for serious crimes. There really is no deterrent in this country.

19. What personal trait has gotten you in the most trouble?

Voicing my opinion and failing to filter! Over the years I have become more outspoken and more impassioned about certain issues. I tend to over-analyse and question everything. Oh and I am rather stubborn. If I believe something in something, I won’t budge.

20. As a child, what did you wish to become when you grew up?

Just happy I guess. As I said before, I never had a particular job or career in mind. I’ve considered various options and ideas over the years. But all I ever really wanted was a home and a family of my own. That’s it. Not much to ask, eh?

I don’t think it is.


I really hope you enjoyed this collaboration with Wheelescapades. Let me know in the comments.

I’d also love to hear from you and find out how you would answer these questions!


To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

Getting to know… Wheelescapades | 20 Questions

One thing I love about being a disability blogger is the fact that I am able to interact with other like-minded bloggers.

I recently got chatting with the lovely Gemma over at Wheelescapades. We quickly realised we have a fair bit in common: we’ve both studied art, we have a mutual love for all things Disney, and we both have muscular dystrophy, albeit different forms.

So, we thought it would be fun to collaborate on a blog post. To learn even more about each other, we decided to ask 20 juicy questions. You can find my answers to Gemma’s questions over at her blog!


Here are her answers to my 20 questions…

1. What is your biggest ambition in life?

I wouldn’t say I’m the ambitious type. There’s lots of things I’d like to see and do as you’ll find out throughout my answers. But when it comes down to it I’d just like to be content and happy. For my friends and family to be too. It’s the simple things that make life.

2. What is your dream job?

I love anything arty and creative. I’m too indecisive to give you one dream job title, but I’d like to be in an atmosphere where I am surrounded by creativity. I enjoy making things, drawing, textiles and I’m going to say I would like to work in theatre design, costumes and props.

3. What do you most regret?

I don’t think I have any major regrets. That’s no way to live.

I do often regret not ordering dessert when I’m out with friends and theirs arrives leaving me sugar craved.

4. If you could live anywhere in the world, where would it be and why?

Although there are so many places I’d love to visit, I think I’m perfectly happy living where I am. I love England, it’s history, its heritage, the traditions, and yes the weather! I know it’s something everyone moans about, I’m guilty of that too. I know it can be unpredictable and awfully grey at times, but I like the differing atmospheres. We are lucky enough to get sun, snow and thunderstorms, but nothing too extreme or scary.

On a smaller scale I like the area I live in, Norfolk. I’m in a small town, not far from the city, the sea and the countryside. Norwich is a diverse city of art, architecture and music. I can also easily get to London.

5. Dream dinner party guests: if you could invite any 5 people, alive or dead, who would you choose and why?

Alexander McQueen, Tim Burton, Andy Warhol, Stephen Hawkins, and Banksy. All creative, passionate and intelligent minds that know what they are/were and do their thing with conviction. Need I say more.

6. If you could visit any time period throughout history, when would it be and why?

Well I don’t think wheelchair access is going to be very reliable however far I travel back. As a mega Downton Abbey fan I’d love to dress 20’s style and attend one of Lady Mary’s Luncheons.

I’d also love to go back and spy on myself as a child, my Mum as a child or my grandparents.

7. If a genie were to grant you any 3 wishes, what would you wish for?

This is the one I’ve been struggling with (I take these questions seriously!). Do I go for the big things: world peace, a cure for SMA, an end to poverty?? Or the smaller stuff like a fully accessible luxurious house, enough money to help friends and family, to have a talent that can make me a living?? Basically it depends how good this genie is and what the rules are. There are always rules and consequences to these things! Maybe I shouldn’t rub the lamp…

8. What is your ideal holiday?

My dream is to visit Florence, Italy. The complications, discomfort and fear of losing or breaking my wheelchair has meant that I haven’t flown since I was a child.

I’m not a ‘by the pool girl’, although I do love a spa! My ideal holiday would involve seeing the sights, being around the locals, visiting little cafes, museums and galleries, plus a wheel along a river and cocktails on a roof – With warm but not sweltering weather. Don’t ask me where this destination is, although I’m open to suggestions.

9. If you were Prime Minister for one day, what would you do?

Cancel Brexit. Can I say that? Shouldn’t we have learned by 2017 a united world is a better world.

I think I might need longer than a day!

10. Who or what inspires you most in life?

I can be inspired by the simplest things. I wouldn’t say that one event or person has inspired me to be something. It can be a book I’ve read, a chat with a friend or a film I’ve seen. All these things can inspire thoughts, make me want to be a certain way or do a certain thing. In fact, I am often inspired just people watching. Seeing how people react can trigger a thought or idea.

11. Could you please share 3 interesting facts about yourself?

  • I won first prize in a national textile design competition. My prize was to visit Première Vision in Paris.
  • I eat almost everything with a fork, including Wotsits.
  • I haven’t seen my natural hair colour since I was 16. I’ve had almost every colour, including blue and red at the same time. I’m now 32.

12. How would you describe yourself in 3 words?

Persistent, sarcastic, tea-drinker.

13. If you could spend one day in someone else’s shoes, who would it be and why?

Can I say my cat even though they don’t wear shoes?

I’d lay around on the windowsill, worry free, watching the day go by. Maybe take a little nap and have some chewy treats. Get “cooed” and massaged on the head if I’m good.

14. What is your biggest fear?

Spiders! I really do hate them. And unfortunately most of my PA’s do too. I didn’t think of that question when I interviewed did I?! – Job title ‘spider catcher’!

Umm on a more serious note… everyone’s fear: losing family and friends.

Disability-wise: losing strength, the independence I have and communication.

15. What annoys you most?

Although you haven’t read question 18 yet, you can refer to it here.

I think moaners annoy me the most (yes I know I moan too, we all do). You know those people that make a big deal of nothing. I know everybody is different, we all have our issues and our weaknesses. But people, stop sweating the small stuff and appreciate what you’ve got. Enjoy the washing up! Appreciate the walk to the shop for milk to make yourself a brew. Yes you’ll get colds, and they are irritating, but the likelihood is you’ll be over it in a few days.

16. What makes you happy?

Being around friends and family, my cats, a day in the sunshine and drinking tea. Netflix days, ache-free days, a facial at the spa, a good book, Seeing the end result of my craft project, festivals and the outdoors too!

17. If your life was a novel, what would the title be?

‘Wheelescapades’ – the title of my blog, as that took me long enough to think up. I’m no good at these things.

18. What is your disability, and what frustrates you most about it?

I have SMA 2 (Spinal Muscular Atrophy Type 2).

I think it’s probably the small things that frustrate me the most. The little day-to-day things that most people take for granted. Yes I’d love to travel the world problem free and have an amazing job without limitations. But it’s not just me, and my disability that doesn’t get that.

What I’d like is to be home alone (with at least 7 cats), make myself a brew, switch on the TV, do all the crafting I want and get up for a wee when required! I’d love to fall into bed exhausted (without connecting my feed and breathing machine), sleep comfortably and uninterrupted and meet a friend for breakfast at the drop of a hat. I’d even be up for doing the washing up!

Also I’d quite like to just have a cold without wondering if/when it will put me in hospital.

19. In theory, if a magical cure were available, would you want it or not?

Okay, I know I’m probably supposed to say no here, as someone who is trying to change people’s perception of disability, blah blah… But yes, I would take that cure. I wouldn’t change my past life for anything. If I could keep the knowledge I have, the friends and family I’ve got and the experiences I’ve been through, then yes, give me that cure!

20. Why did you become a blogger?

I get into some awkward, funny and difficult situations mainly due to my disability. I also get different experiences and treatment with/from people because I am a wheelchair user. My friends and I would always joke about this; the good and the bad, as a way of coping I guess. Sometimes you have to laugh or you’ll go crazy. Often saying “if only people could hear us” or “I should write a book of all this drama”. Well I guess blogging is my book of tales.

I also wanted a serious side to the blog. Not many websites give you the gritty details of a venue’s (in)accessibility. Yes, they are starting to declare themselves ‘wheelchair accessible’ or claim to have an ‘accessible toilet’. Bbut accessible can mean so many different things. Just getting through the entrance doesn’t make a venue accessible. I wanted to chart good and bad access and to get people to look at it more.


I’d like to thank Gemma aka Wheelescapades for taking the time to answer my questions, and for being so candid!

I’d also love to hear from you! How would you answer my 20 questions?? Please leave a comment.


To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

 

Life Update ~ Carers, Hoists and OT’s

Hi folks, I hope you are all healthy and happy.

I feel like it’s been a while since I blogged about the goings-on of my day-to-day life. Not a particularly exciting post, granted. But I thought it might be useful to share these ‘goings-on’ with you, as I’m sure there are some of you facing similar struggles.

I have for the past few months been occupied with life crap – specifically, disability-related life crap – which has meant that blogging has unfortunately had to take a backseat.

Righty right, I’ll try and keep it brief…

Care

As some of you may know, I live with my parents who are my primary source of support. I do have a part-time carer who I employ, but otherwise my Mom (yes, I say Mom vs Mum) is my main caregiver. Sadly she herself suffers with progressive osteoarthritis, and following exploratory surgery in October, it was decided that she needed a full knee replacement.

This in fact took place on Sunday 20th August, although it wasn’t until a couple of months ago that Mom was given a date for surgery. However, prior to this I had to put in place provision for my care needs. This involved recruiting a second carer and ensuring I have all the equipment I would need.

For the past 4 months I have searched for a second carer. I advertised everywhere and anywhere – newspapers, news agents, local shops and the post office, job sites, Facebook and so on. The response has really surprised and frustrated me – so many no-shows, let downs and people failing to read or understand the basic job specification.

I ask very little of applicants. I don’t request references, qualifications, experience or even a CRB/DBS (criminal records check). I interview informally in my own home, and with employees I am flexible, easy going and more than fair, taking into consideration their individual circumstances.

However, despite the fact I am completely non-ambulatory, I have never used a hoist. Thus far, family and carers have always preferred to lift me manually as it’s much quicker and frankly less faff! I’m only tiny – approximately 5 feet tall and 5.5 stone in weight. So until very recently, it has always suited to go without a hoist.

Understandably this is off-putting to potential applicants. But, every carer I’ve ever employed has openly admitted that working for me is a breeze compared to any other job they’ve had, and that for them the lifting is a non-issue. Nevertheless, I appreciate that most would prefer not to lift – that’s fair enough.

Hoists

With this in mind, I instigated the process of applying for a ceiling track hoist to be installed in my ground-floor bedroom/ensuite bathroom. I will need a H-frame in the bathroom and a short track from my bed to the bathroom.

Not a huge ask really, particularly as I have never received any support in the way of equipment. Everything I have – wheelchairs, bed, bath lift etc. has been self-funded. The post-code lottery is a very real and unjust thing, people! But that’s a topic for another day…

Dealing with Community Occupational Therapists

I contacted the community Occupational Therapists, explained the situation and requested a needs assessment. I was initially fobbed off with the excuse that they’re vastly understaffed and that I would need to be terminally ill in order to qualify. When I asked how they suggest I manage after Mom’s operation, the OT replied that I should “camp out” and be dressed, bathed and toileted on my bed!

Disgusted at her casual disregard, I asked how she would feel having all her personal care needs carried out on the bed she sleeps in. “Oh well, this is the situation we’re in. It can’t be helped”, was her insensitive response.

I then contacted my neuromuscular consultant who wrote a letter of support. On receipt of this letter, the OT’s suddenly found time to carry out a needs assessment in my home – shocker! (It’s not what you know, but who you know, right!?)

Following this, two reps – one from TPG, the other from Prism Medical – came and measured up in order to provide quotes for the ceiling hoist. I have since learned that the second quote is unusable, which frankly is no surprise, as he clearly had no clue what he was doing; at one point asking to see the gas meter. Even the OT who accompanied him questioned his experience.

In the meantime I have been issued with a portable hoist, though it has taken many weeks to receive a usable sling. Rather than measuring me, then visiting me in my home with a variety of slings to try, the OT’s insisted on sending one at a time. After much harassment from me, a community OT finally conceded and actually attended to properly assess me for a sling.

Honestly, they complain that they have a backlog of work and no time, and yet they waste so much. The sling issue could have been carried out in one appointment. Simple, done, move on. But instead, they chose to drag it out for weeks simply because they wouldn’t visit or listen to the patient.

And now…

Today is Sunday 10th September, and no further progress has been made with the ceiling hoist. Yet again I will have to chase the OT’s, otherwise nothing will ever happen. Sad but true.

I had taken on a second carer who began shadowing at the beginning of August. She was very enthusiastic, supportive and accommodating – said all the right things. Then whilst on my way to visit mom in the hospital, two days after her surgery, I received a message from the new carer, who was due to work that evening. She issued a stream of excuses as to why she couldn’t (translate: wouldn’t) do the job.

Until then, my current carer had always been present. Essentially it turns out she was happy to come and get paid to watch someone else do the job. She just didn’t want to have to do any work herself. Now I know why she’s had so many jobs!

So, as it stands I am managing as best I can with my one part-time PCA, though she is planning to leave in late October to train as a paramedic; thus posing yet another obstacle.

Having realised how long this post is, I think I will leave it there for today, though there is much more to tell. Suffice to say, the saga continues…