Cerebral Palsy Awareness Day 2023

Today is Cerebral Palsy Awareness Day in the US. I’m from the UK and I’ve been raising awareness for it for years, as well as for World Cerebral Palsy awareness Day on October 6th. I enjoy any opportunity to raise awareness. The CP awareness colour is green.

From searching through my blog posts, I’ve done posts about my awareness efforts over the years (Facebook posts, trying to get people to wear green, sharing general information).

I’m re-posting some paragraphs from my post on this day last year. That’s far more detailed, but here’s more about how Cerebral Palsy affects me.

I have Spastic Quadriplegia Cerebral Palsy with Hydrocephalus and all this means my muscles are too tight all over my body as well as my trunk and face. I have weak muscles too.

I have a powered wheelchair for mobility and I wear strong high prescription glasses. I am registered blind. I have shunts which drain off the fluid from my brain and these surgeries left a lot of scars.

I have difficulty with concentration, relaxation eating and drinking, swallowing properly, general mobility and positioning, sleeping, spatial awareness and vision as well as stamina, general coordination, grip ability and strength. I have a limited range of motion and have daily pain and spasms and seizures. 

So far this year, I’ve mentioned the words Cerebral Palsy and Hydrocephalus a lot in my daily life. This is because I’ve had to explain to doctors who don’t know me what disabilities I have. I’m also in the exciting but complicated process of getting new positioning equipment for my powered wheelchair.

Last year, a seating and posture evaluation revealed what my current seating doesn’t do for me, and this year we found someone to help. I’m waiting for a new belt as well as a chest harness and foot positioning aids.

I’ve been searching for a new wheelchair too. If you’ve read my blog before, you’ll know I love shopping. So far, it’s a slow process with the positioning equipment arriving since it’s coming from the US and New Zealand, but I hope it’s here soon.

Cerebral Palsy gives me a lot of daily challenges, and. I’m having more arm, hand and finger pain that’s been going on for a month and feels like numbness and also throbbing pain and pressure like someone is squuezing my wrists, fingers and forearms hard. I already have a lot of spasticity (muscle stiffness), as well as weak muscles.

Today as well as every day, I give thanks for my current powered wheelchair (Invacare TDX SP 2 NB) and the fact it’s a beautiful shade of dark purple and my comfortable Deep Jay 3 2 valve air cushion which I love, but which is not sold anymore 😦

I’m thankful to those who create equipment and medications to help those of us with CP.

I do wish the prices of equipment weren’t so high, as this creates worry and concern and means it’s harder to get. Lower prices would help so many people.

Happy CP awareness day if you have CP or know someone with it.

I’m now looking forward to World CP awareness day.

Disability A-Z: Q is for Quiet

When I was little, I was very shy. People always called me quiet. It was hard to make friends. I was known by my doctors in the early years of my life as a “quiet and sensitive soul”. But even then, people knew I was caring.

When I was seven years old, I decided that if the bullies that were a part of my life then were going to win, I’d have to be stronger and find my voice and be more assertive.

People were aware of my dysarthria, a difficulty using and controllling the small muscles of my mouth and pronouncing words which I have as yet another part of how my CP affects me.

I remember how people would tease me by asking what I said, or they’d say “stop drooling” as that’s what I have always done, as this is another symptom of dysarthria.

I remember I also had some trouble with stuttering sometimes, but that went away. At times, I wished the dysarthria would, too. I felt if I could talk better then people would like me more. I also knew I had to accept my limitations.

I knew to stop the bullies I needed a plan, It wasn’t as hard as I thought, as once I’d decided, that was what I was going to do, I set my plan in motion. I have always been an imaginative person.

I decided that I would:

Answer more questions in class,

Say hi to people and ask them how they were always

Be the first to talk to people and not wait for them to talk to me

Invite people to my birthday parties

This paid off, and some people started noticing me more. But the bullying continued.

As I grew older, I started to notice that people would be in groups and they would not want to work with me. I’d ask “Do you want to work with me?” They didn’t and I’d often be working with my classroom assistant and carer and would make the best of the situation.

In family situations, I always asked people how they were, and mum would gradually start calling me a “chatterbox” more as I grew.

I would talk to good friends for hours on the phone, just like anyone else my age.

I use voice dictation for computer use, and over the years have emailed, used Instant Messenger, sent cards, “penned” novels and short stories and poems, love letters, tributes, journal entries, Christmas and birthday lists, lists of what I want to buy for myself and more.

I am glad that the decision to be more assertive has made me beat the bullies. It’s also led me to have some of the best experiences of my life:

Meet people I value whether life’s path has kept them in my life or not

Be part of Riding for the Disabled (RDA) groups in Oxfordshire, England and from there go on amazing vacations to La Clusaz in the French Alps and do adaptive sports that I never thought I would: paragliding, white water rafting and sliding down a luge slide, both accompanied by amazing people.

I decided when I was young that when the time came, I would go to university and also get married, whatever it took and I wanted those life experiences.

A big part of helping me not be the “quiet” person I once was was learning languages at school. This got me out of my comfort zone and I fell in love with Spanish. I felt confidence pour from me as I spoke the langauge I loved. I had a little bit of speech therapy thanks to a trusted neurologist, and I have never been able to make a rolling R sound but I was once told my Z sound is great. This is pronounced like a “th” sound.

I am complimented on my Spanish and my speech is slower than others and has pauses and can be slurred and/ or nonexistent if I am too tired.

I am glad that, for the most part, people understand me whether I am speaking in English or Spanish. That comes down to how interested and patient they are 🙂

I can be talkative if I am passionate and excited about something. I have also learned that asserting myself has meant I had to “lose the fear” of what others think/say/do, and that has been challenging, but I’m better at it than I used to be.

At many points in my life, people in general and some of my doctors have asked “Can she understand me?” of the person who was with me as they see I have trouble making eye contact or recognizing people I know, and this is even worse if I haven’t seen them for awhile and down to my visual impairments.

Recently, they asked Alfredo if I was aware of things going on around me. I am, very much so. I just can’t react to things quickly. The time when I’m not aware is when I am having a seizure or when I am having severe fatigue.

We always say “talk to me, ” or “nothing about me without me.” Don’t be put off by the way I move and the involuntary movements I have.

I feel like I have educated people throughout my life, and I am now much more than the quiet person some people once knew.

If you are new to my blog, come and say hi to me and if you are a regular reader of my blog, thanks so much for your support.

Unhackable Soul: An Interview with Maureen Sharphouse

After my audiobook review of Maureen Sharphouse’s novel Unhackable Soul, I am so excited to post my author interview with her.

Thanks for the interview, Maureen!

1) Unhackable Soul gripped me from the start until the end. I thought it had great pacing. How did you decide on the pace of the book, and do you have advice for me on pacing in a book?

I wanted Unhackable Soul to be easy to read, have a sense of flow, and not overwhelm a reader. I know how difficult it can be when living with a disability and pain to read or concentrate for any length of time. And so, I consciously kept the text concise and uncomplicated- each sentence leading into the next split the journey I take the reader on into 30 ‘days’ – with each of the 30 ‘days’ having a natural rise and flow, be an entity in itself – and yet smoothly transitioning into the next … It was a mixture of keeping the pace flowing from start to finish (with sentences looking back as well as forwards) , for a reader who wanted to keep reading. But each ‘day’ with the ability to stand alone so that the reader can go back and dip in and out or read a doable chunk at a time.

2) I loved how there were quotes throughout the book. I have a memoir and would like to include quotes here and there. Do you have tips on selecting the best quotes and where to put them?

When it comes to quotes, trust your intuition and use the ones that feel best fit to you and resonate with you, and either lead in with them (ie put them at the start of your chapter or section) – or use them at the end of a chapter or section to tie together/sum up the theme of what you have been sharing in the preceding text. I tend to do a google search for quotes related to the specific theme of any piece of writing I am working on- read them out loud – and see which resonate with me/speak to me at an intuitive level/FEEL the best fit – and work them in from there…

I also occasionally use quotes within the body of writing pieces if they give a valuable perspective on what I am about to share. “Echoing the words of…” I have found a good way to lead into the person’s name the quote is attributed to and then into the quote itself.

3) What was the hardest thing to write about?

Sharing some of my own personal journal extracts in my book was probably the hardest. It takes courage to share your own private thoughts, emotional state, weaknesses, and vulnerability, especially when you know your family and loved ones are likely to read what you have written once your book is published. There is, however, real power in sharing your own vulnerability and letting your reader into the authentic ‘you’. It can connect you with your reader at a deep level and ‘speak’ to them directly.

4) What was your favourite part of the book?

To pick one part of my book as being my favourite is quite difficult – so many stand out for me. However, if I have to pick one, the parting story ‘Light the Dark’ which I share with the reader at the very end of my book is about a truly magical evening I had with some of my grandchildren looking into the black sky at the stars- and always reminds me how precious life is, and makes me smile.

5) I found the audiobook relaxing to listen to and liked that you narrated it. This made it even more powerful than it is already. As a person with multiple severe disabilities, I identified with lots of things although my diagnoses are different to yours. I think you portray your life with courage and grace.

Thank you.

I like how you intertwined everything in your memoir and how I still felt I got an understanding of your conditions.

6) Do you have any tips for me on combining information about my life and disabilities in such a way that it’s as interesting as your memoir was for me?

Best tip would be to remember that whilst you want to share your story, the book is not all about you- but about what your reader takes away from reading your story. Think about the purpose behind your book, and what you would want your reader to take away from reading it that will stay with them… Speak directly to your reader, connect with them and transport them into your world, so that they experience an internal shift of some kind in their own life because of what you have shared. What is the message you want to give them? Stay connected with that….

7) Do you have ideas for another book?

I have several books cooking in me at present- including a follow-up to Unhackable Soul, and some children’s books – and am finding myself jotting down chunks of writing that naturally flow through me and land onto the page. I am sure in time by trusting the creative process they will find their perfect place! I write better when I think less and feel more. So at present I am in creative cooking mode and trusting the process!

8) Any tips on coping with the “bad” days where pain is concerned?

I share a lot of pain management techniques in my book that can help when the going gets rough, and also on my website at http://www.maureensharphouse.com, including breathing exercises, visualisations and meditations. Fighting and battling against a ‘bad’ day and pain flare will only bring more feelings of fighting and battling and keep fueling the pain flare. It’s important to remind yourself the moment you are in will pass, as do all moments, whether good or bad, and consciously putting loving arms around yourself, treating yourself with kindness and compassion, and doing all you can to craft calm within the storm. Remind yourself you got through the last moment, and so you can and will get through this one and the next one. Focusing on your pain will only bring more thoughts and feelings of pain- and so, consciously breathe into your pain, acknowledge its presence, and then do all you can to consciously nourish your soul and spirit and steer your mind elsewhere. On the ‘bad’ days, do all you can to craft calm within your storm and hold yourself in arms of love and grace.

Disability A-Z: P is for Pain and Pain Management

Pain, it’s something many people live with, and yet it’s very personal.

I’m one of those people who has lived with some type of pain all their life, be it muscle spasms, headaches or pain from fatigue or strange pulsating and crawling sensations on my scalp and a feeling of pressure, as if fingers are pressing on my scalp.

The worst type of pain I have had was from headaches related to hydrocephalus. My shunts control my hydrocephalus, but that doesn’t mean I haven’t had problems with them.

One of my main symptoms was headaches. They were intense and made me cry. I was also lethargic and would vomit.

Cerebral Palsy makes me feel like my muscles are in a vice. Muscle spasms feel like strong cramps and can keep me awake at night. They are painful and I take a muscle relaxant called Baclofen. My spinal deformities cause pain in the form of back and neck pain and my foot deformities do too. The pain I have in my feet is in my ankles and foot arches because I have spasticity (muscles that are overly stiff) as well as weak muscles.

Often, my muscles throb and I have pain then.

For the days when I have more pain, I take Tramadol. When I am tired and in pain, my thinking will be impaired and I will have a hard time communicating, to the paoint of being unable to.

We have an infrared heat lamp which makes me relax so much I’ll fall asleep. Being cold causes more spasms and pain and I use a hot water bottle in bed every night in the winter.

Unhackable Soul by Maureen Sharphouse

About the Author:

Maureen Sharphouse lives with her husband, Peter, their dog, Jackson, and their Birman cat, Phoebe, in the village of Milnathort, Kinross-shire, Scotland. She is a life and mindset coach, mentor, NLP Master Practitioner, writer, and speaker. Maureen’s passion is to inspire and help individuals live a unique legacy they are proud of. Her mission is to help people discover who they are beyond their physical body, live their best lives, and restore and unleash their soul’s fire and passion. Maureen’s vibrant enthusiasm for life is evident despite living with severe daily pain and complex ongoing health challenges. She is a lover of morning sunrises, good coffee, fresh flowers in her home, and spending time with her much-loved family and grandchildren.

You can connect with Maureen at MaureenSharphouse.com.

Sign up for the 30-Day Unhackable Soul Course here: unhackablesouluniversity.com

About the Book:

Fed up with pain and illness dictating your life?
Choose to rise up.

Living with chronic pain is far from easy. Left unchecked, it erodes your spirit and keeps you living in the dark. It can influence what you believe about yourself and even hack your soul–if you let it.

Author Maureen Sharphouse knows the challenges of living with pain first-hand. She has endured more than three decades of debilitating physical health challenges, including the incurable neurological illness known as “the suicide disease.” Yet, in the midst of her daily pain, she lives with passion, joy, and enthusiasm for life.

In thirty daily missions. Unhackable Soul reveals how you can feel vibrantly alive despite chronic pain. Discover how to
rise up from a life dictated by pain and illness to one fuelled by enthusiasm and purpose.
feel alive and experience greater joy, peace, and comfort.
wake up every day eager to embrace life despite your challenges.
Live well. Reignite your light. It’s time to become Unhackable.

My Review:

I was really excited when Maureen Sharphouse sent me an Audible audiobook of her memoir, Unhackable Soul. I think the title is very apt, as Maureen is unhackable in my opinion.

In her memoir, she discusses how she got her diagnoses of MS and then Complex Regional Pain Syndrome. The importance of family support is present throughout the book, and the fact Maureen narrates it makes Unhackable Soul even more powerful.

Maureem has experienced dark moments, lonliness, uncertainty and more. I, too have felt, and sometimes still feel these things.

I identified with her in these moments although I have Cerebral Palsy and Hydrocephalus and not the same conditions as she does. Because often living with disabilities is a constant uphill fight, yet that fight is also very personal.

Maureen is a wonderful person and someone I am proud to know, even if it’s through phonecalls and emails. She’s someone who makes me feel immediately at ease, and her naturally soothing voice is perfect for this audiobook. The pacing is unhurried but with great attention to detail, and I can tell that awareness of her conditions is important to Maureen, as are family, friends and the times she is in places that are special to her.

Unhackable Soul has so many life lessons, and listening to it is like having Maureen in the room with you. It’s like a friendly chat from a caring and empathic friend.

I wonder if one day I’ll meet Maureen? I hope so.

Thanks to Maureen Sharphouse and Unhackable Press for my Audible Audiobook in exchange for an honest and voluntary review.

5 stars. I’d give it more if I could. Unhackable Soul is unforgetteble, just like Maureen herself.

Where to Buy:

Boldwood Romance Tropes Bingo Day 6: Friends to Lovers-Josh and Gemma The Second Time Around by Sarah Ready #BoldBookClub

About the Book:

The highly anticipated sequel to romcom Josh and Gemma Make a Baby. 
Everything is about to change.

Gemma Jacobs has life figured out. She’s upbeat, positive to a fault, and the master of her own destiny. She has a wonderful career in social media marketing, lives in a trendy apartment with her fiancé Josh Lewenthal, and is pregnant with their much-loved baby.
Her life is wonderful. Absolutely perfect.
Except…
What really comes after the happily ever after?

Josh Lewenthal is laid-back, fun-loving, and always finds the humor in life. He writes a wildly successful web comic series, and can’t wait to marry Gemma—the woman of his dreams.
His life is amazing. Terrific.
Except…
What happens when everything changes?

Suddenly Josh and Gemma’s lives are turned upside down, and their love and their future together are at risk. They realize their happily ever after isn’t the end, it’s just the beginning—and now they have to fight for it.
They confront a devastating separation, the return of world-infamous Ian Fortune, and the question of whether or not their love can truly survive when everyone says…it’s already gone.

Captivating, gripping, and full of unexpected twists and turns, this love story yanks you into what happens after the happily ever after.

My Thoughts:

TRIGGER WARNING:

Traumatic Brain Injury, Premature birth

Josh and Gemma The Second Time Around follows them after marriage and the end of Gemma’s pregnancy.

The prologue had me hooked. This propelled me to immerse myself in their story and wow, was it an action-packed and emotional rollercoaster!

I listened to the audiobook. It was a quick listen, and the narrator was perfect for Gemma’s voice and also Josh.

Baby Hope was just the cutest. Her name choice was soo apt given how she came into the world and I was happy Gemma had support from her mum, but I did NOT like Ian, or his attitude and views towards his work at the rehab facility Gemma was in. I’m a person with multiple, severe and complex disabilities myself (although I don’t have TBI) and found this shocking. I’m glad Gemma did not want much to do with him. Because I didn’t either.

I was rooting for Gemma and Josh through the ups and downs of their marriage and life. I felt so many emotions: sadness, happiness, anger and hope.

Thanks to Sarah Ready for raising awareness of Traumatic Brain Injury and premature birth. May this awareness go a long way to help those with TBI and those who were born prematurely. I was born prematurely and Hope’s story made me emotional as did Gemma’s.

I would have liked to experience more of Gemma’s experience in therapy, as I felt that was skimmed over.

This audiobook is beautiful. Thanks to Sarah Ready and the publisher via NetGalley for my eARC in exchange for an honest and voluntary review.

5 stars

Wheelchair Accessories Trial

Today was finally the day that I got to trial wheelchair accessories. The weather was cold but there was some sun that was warm. later on.

We arrived at the dealership on time and I saw the same occupational therapist as last time.

I felt a little nervous but excited as she trialed the products with me. We trialed three headrests (Contour Headrest, Adjustable Lateral Headrest and Extended Lateral Headrest, all from SPEX Seating).

Two sizes of Stayflex chest harnesses and 4 point pelvic belts (both by Bodypoint).

And two sets of JAY positioning shoe holders (one with Achilles tendon relief, one without)

I was especially excited about the fact we found mounting hardware for the headrest that is very flexible and adjustable at all angles and in all directions. For the first time ever, I was not straining my body, neck and head trying to reach the headrest.

The therapist said my current backrest was well built but that it doesn’t support me enough in terms of contouring and side support and it doesn’t conform to my body’s shape and deformities. This is what I’ve heard before.

Another happy moment was when I mentioned the cushion I had been recommended and she was in agreement. That trial for that and a backrest trial will be sometime in the future, as well as one for another wheelchair.

I’ve chosen a size of chest harness and pelvic belt and we all felt the Extended Lateral Headrest was better for me as it offered me much nore support and for once I had no neck ache with it. We finally settled on the positioning shoe holders without tendon relief as they will fit on my footrests better.

I’m glad to find such an experienced therapist and we were there an hour and a half and we both felt listened to and not rushed. We confided in her about people’s reactions when they know how complex my needs are and how many people just have no idea how to react to me when I tell them what disabilities I have.

We’ve already had technicians walk away and not come back, and we all agree that it’s about good positioning from head to toe, starting with the pelvis.

The questions she asked were:

“What cushion do you have'” We explained that it’s a JAY Dual Valve air cushion that is adjusted the best we can. She asked if it was adjusted now, and I said yes.

She asked if I could sit up and sit back more, and I answered no.

She asked if my wheelchair has a seat tilt feature, and I said yes. Then I said “We’ll show you my posture with it.” So we did and she said “Yes, I still notice your deformities and postural difficulties and there’s still the upper body positioning issue.”

So, we saw that my tilt and recline features on my wheelchair help my comfort but not my positioning without extra aids. We were all chatty, but there were also a lot of concerned silences.

She did nothing that made me feel uncomfortable or in pain, like other people do, like move me roughly or put their hand under my chin to get me to look at them better.

We were interrupted by phonecalls from the delivery guy with my drugstore order (more makeup as well as some much-needed makeup remover). I’ll update you about that on Sunday.

Today has left us both feeling very happy. The best part was seeing the products in the flesh rather than on websites.

Disability A-Z: O is for Occupational Therapy and Occupational Therapists

When I was thinking of what to talk about for this post, I immediately thought of Occupational Therapy, as this is a big part of the therapy that’s available for my disabilities.

Occupational therapy is a healthcare profession which focuses on helping people who are disabled to learn, maintain or improve their ability to perform activities of daily living.

This post is relavant to me now, since I am currently working with on Occupational Therapist (OT) to get my wheelchair accessories.

Last year, I won a writing competition by talking about how occupational therapy has helped me and an occupational therapist who made an impact on my life.

The occupational therapists I have known in my life have not been many. I don’t know if I had occupational therapy before I was four and a half at all, but when I was four and a half, I met Maggie Ellis, who would be my OT untill I was seventeen years old. She was the person I talked about in my OT Story for 3E Love’s Wheelchair Heart last year.

The places I have had occupational therapy have been varied, from the Hugh Ellis Paediatric Assesment Centre in the grounds of The Churchill Hospital in Oxford. I’ve had some at home and also at other hospitals.

Maggie is in my memory and heart as someone who was kind, funny, cheerful and encouraging. I always had a smile on my face when I saw her.

She noticed how I embrace my disabilities and uniqueness. She saw that I didn’t need someone to help me do that. She saw as my self confidence grew.

She saw how hard I tried to do things, and suggested I take a break for as long as needed, and detailed the fact that fatigue can give me headaches.

She helped me use the voice dictation software that I used for school and university assignments, and she gave my teachers advice on how to meet my needs better.

This did not always work because of people’s attitudes, but she did a great job of helping me.

As an adult, I once had occupational therapy with my physiotherapist as the occupational therapist was off work, and so that was a different experience. She got me to try and move a big gym ball with my hand (I couldn’t) and she figured out that a ball would need to have something to help me feel it better in my hand. So she suggested a ball with raised areas so I could feel it. She tried to get me to pick up a small block.

Occupational therapists have helped me get daily living aids throughout my life. Thank you Maggie and Helen, I will always remember you as people who really helped me.

At times, including recently, I’ve had to be my own occupational therapist, when searching for products when for some reason I did not get the help I needed.

I used my knowledge of my own needs when choosing a computer and have searched for many articles before deciding on a wheelchair, wheelchair cushion, backrest bed, hoist (Hoyer lift) cutlery (eating utensils) or whatever I need.

I have then talked to my OTs about products to see what they think. Other times, they have recommended products.

Occupational therapy and occupational therapists will always be a part of my life, but by working with them I have essential equipment and aids that I otherwise would not have.

A Good Day Plus Wheelchair Positioning Evaluation Update

Today has been the best day in a long time in our fight for my wheelchair accessories. It was the first time we got past the “please send us a quote” phase. Because we actually got the quote. We accepted and the Occupational Therapist is going to allow me to trial things.

I am SO glad to have found someone experienced enough to work with me and recognize my complex needs instead of lying to us about their experience, not sending quotes like the others or not even replying to emails and not explaining whether they could help or not. I’ve been very concerned about where we’d get help, so has Alfredo. I have always had the feeling that people were nervous or scared about my disabilities and how they affect me and like I was “scaring people off,” either by mentioning the names of my disabilities, or by further explaining how they affect me, and even more when I explained what I needed.

We say today our prayers have been answered after all this time by someone willing and able to say yes to me and my unique needs instead of ignoring me completely. I believe the people who help me are angels. We prayed hard that we’d get results.

I sent off my entry for the Start Strong Challenge by AutoCrit. And it was day 26 of Bloganuary. The subject was languages, something I love to talk about.

We watched the movie Wonder which we’ve seen more than once. It’s great movie for spreading disability awareness.

I’m currently listening to Tilly’s Tuscan Teashop by Daisy James, which will be on my blog on Saturday. Her books are feelgood and I can’t wait for this new series.

Wheelchair Positioning Evaluation: Third Time Lucky?

Today, we went to a different wheelchair dealership. It was only 5 degrees when we left to go, but it was sunny and so looked beautiful.

We got to the shop and had to wait a little. A worker started talking to us and took us to an examination room.

The lady we were talking to (who it turns out is an occupational therapist) was knowledgeable and noticed my in-turned feet (even in my winter boots) scoliosis (curved spine) kyphosis (hunched back) and lordosis (abnormal inward curve of the lumbar spine). She noticed that my lumbar lordosis is also cervical. I wasn’t shocked about this, as I half thought it would be given the other spinal deformities I have and the amount of neck pain and pain at the base of my skull I live with daily.

Again, we saw that:

My current seating system (backrest and cushion) is not doing what it needs to to support me

That my head/neck positioning is not good, and it’s expecially important to get that right for me so my head and shunts are well supported.

That this and overall body positioning is a challenge for me and that the postures I adopt are very exhausting for me.

She’d heard of the products I am interested in which is great. I talked about my having been a preemie at 29 weeks and my brain bleeds and resulting diagnoses.

We also talked about batteries and my wheelchair motor which sounds like a vacuum cleaner but the chair still moves well and as it should do.

We also talked about a future new powered wheelchair and the complexities of head and foot positioning for me, as in as well as shoe holders, a knee support for my left knee to help how much it turns outwards and falls to the side since I can’t control this on my own. She said because my feet are severely rotated, foot holders may not help the deformities completely but they will stop my feet falling off the footrests when the wheelchair moves and buckles will be better protection against spasms than velcro straps. I told her about when I had custom footrests and velcro straps and the force of the spasms ripped the straps open.

She said she was familiar with this happening in people with CP who have spasms.

She noticed when I was tired and I thought she was very patient and understanding.

I was tired when we got back from another early start, but it was a good day.

We are feeling good about today and hopeful and glad that the store workers are also occupational therapists.