- 13 September 2014 – Learning to walk
- 29 0ctober 2014 – My progress after almost 18 months
- 10 November 2014 – I fed MYSELF today!!
- 16 December 2014 – Towards independence
- 17 March 2015 – Hydrotherapy
- 9 April 2015 – Setback
- 6 July 2015 – Two years on
- 13 August 2015 – Standing on my own
- 10 October 2015 – More developments
- 23 January 2016 – Two years at home
What do Emma’s dranddaughter and I have in common? We can both hold onto a firm surface, wobble on our feet, and take small sideway steps, like wary crabs, before our knees get too weak and gravity tugs our behinds towards the ground!
29 OCTOBER 2014 – MY PROGRESS AFTER ALMOST 18 MONTHS
The improvements continue. I can:
Two weeks ago, I reached the point where I could hold a marshmallow between thumb and index finger and place it in my mouth but still could not grip a fork or spoon.
A Google search resulted in locating an occupational therapist (OT) who does home visits in my area. “Bev” brought her box of tricks on Friday, assessed my range of movements and quickly set about identifying what I can do to become more independent. My first two targets were to feed myself and push myself up off the mattress to sit on the side of the bed.
Bev cut a Neoprene strap and punched holes into it approximately 2cms apart. The fork/spoon handle is pushed through two of the holes and the strap goes over my hand. I tried it on Saturday without much success and my attempt yesterday morning resulted in so much frustration that I actually wanted to push the tray off my lap. Instead, I screamed, swore and wept. Emma (the nurse) and my husband passified me and waited until I’d calmed down and pulled myself together. Emma fed me and hubby pushed me around the neighbourhood to clear my mind. I didn’t try to feed myself again yesterday.
This morning I decided to sit at the table, and asked Emma to put a cushion behind me to support my back which prevents me leaning too far back (an over-compensation due to my weak shoulders). It worked! I ate banana by using my left thumb to push the slices onto a spoon, and used the same spoon to scoop oats from a bowl. It’s impossible to describe the sense of achievement from such a small action.
Rolling onto my side and pushing up into a sitting position is still a work in progress that Emma needs to help me with. I tend to get too close to the edge so Emma needs to stand in front of me and hold one of my shoulders so that I can wriggle my elbow into the right position on the mattress before starting to press the heel of my hand into the bed. It’s tiring but the more it’s practiced the easier it’ll become.
Bev also added more exercises to my routine and showed Emma how to strap my hands to stretch some of the tendons which are tight. I will receive OT twice a week.
In the past month I have learnt to brush my teeth, and can now roll onto my side and sit up on the side of the bed without assistance. Feeding myself (still with either a fork or spoon strapped to my hand) has become much easier too.
We are sourcing a commode, so that I can use the toilet and transfer to a bath chair, and a gait trainer which will enable me to walk without assistance.
It’s 19 months since being admitted to hospital in 2013; halfway (or, hopefully more than halfway!) through the estimated 2-3 years’ recovery process. The fear of not recovering is lessening but I still need to remind myself sometimes that I have improved a lot since last December and am improving every week. Yes, I still fear that I may be one of the people who relapses but I focus that energy on exercising and then kick the negative thoughts out of my head. The reality is that an extremely small percentage of relapses occur. I may be one of the lucky ones who doesn’t.
- 17 MARCH 2015 – HYDROTHERAPY
I have been going to hydrotherapy once a week for the past four weeks, and am experiencing improved balance, muscle strength in my legs, and endurance when standing. I felt like a little kid in a candy store on the first day: the water is warm and movement is so much easier due to the bouyancy of the water.
My rehab programme is as follows:
- Monday – physiotherapy. Stretching exercises and assisted walking.
- Wednesday – hydrotherapy.
- Friday – occupational therapy for my hands.
- Daily – leg and arm exercises every afternoon with the assistance of my nurse.
- In addition to the above, I also do hand, arm and leg movements while sitting in the wheelchair and when lying in bed.
9 APRIL 2015 – SETBACK
I fell while walking with my physio on 23 March and thought my fall had just resulted in two sore legs, but it turned out that I have two avulsion fractures, one at the top of each tibia (aka shinbone) under the insertion points of the tendon which runs from the patella (aka kneecap) to the tibia.
My husband’s niece – a doctor – visited a week after I fell and suggested xraying because her initial diagnosis was that I had at least one fracture. She was right!
In my case, the avulsion fractures mean that small fragments of bone have partially detached from the tibia. This is good news. Bigger fragments and full detachment would have required surgery. Although I’m not standing or walking on dry land yet, I can still go to hydrotherapy where bouyancy limits my weight-bearing without impeding my range of movement, and can continue with my daily exercises.
The doctor in A&E said healing will take 6-12 weeks. No medication, no splints, no surgery. I’m okay with that. It’s been just over 2 weeks and the pain is gone and my range of movement is almost back to where it was before the fall. The xrays also showed that my bones are thin but we knew that would happen as I haven’t walked for two years. (Astronauts also develop osteoporosis if they spend many months in space – up to 2% bone loss per month for some.) I will continue with my supplements and get back on my feet as soon as is reasonably possible.
Am I annoyed with myself and this setback? Most definitely, yes. But it could have been worse and I’m very thankful that it isn’t.
6 JULY 2015 – TWO YEARS ON
Two years, one month and 21 days down the line. Wow!
Recovering from GBS has been my second greatest challenge. My first was raising children without having either them or I go nuts. My kids are great. Me? I’m still dippy.
Being told that recovery takes three years didn’t do my psyche much good and I still struggle to keep my progress in perspective. I focus too much on how far I still have to go and not enough on how far I’ve come. So:
- My grasp is improving and I can hold a sippy cup and almost hold a thick-handled feeding spoon.
- The new physio, Sharee, recommended a pedal cycle about two months ago and I can now pedal for up to 5 minutes: the first 2 minutes are non-stop, the other 3 minutes are in 1 minute bursts with a 15-second break between each burst.
- Standing up is still a 2-person job BUT I can definitely feel the benefit of cycling as my leg muscles get stronger and standing is getting easier.
- I can slide myself out of AND into the passenger seat of a sedan.
13 AUGUST 2015 – STANDING ON MY OWN
It’s finally happened. I can stand for 10 seconds without any assistance!
Sharee, the physio, has given me more exercises to strengthen my quadricep muscles and our perseverance is paying off.
Claire, the OT, has made two splints for fingers that weren’t straightening properly. I wear these at night so that they don’t interefere with my daily activities. She calls on me twice a week at home. My finger movement has improved a lot, and I can now pick up small tablets with my left hand. The right hand is still a liitle weaker than the left but I can pick up puzzle pieces with both.
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10 OCTOBER 2015 – MORE DEVELOPMENTS
A lot has happened since August. I can now:
- Pick up pills with both hands.
- Pick up a half-full wine glass – using both hands simultaneously – and drink without spilling.
- Stand up from the bed and wheelchair with the help of one person.
- Walk from the bedroom to the bathroom, and from kitchen to lounge, using the rollator. Walking through the house is the next challenge as the house is on three levels and I must learn how to walk up and down the ramps. Climbing stairs is not YET possible.
- Partially bath myself. My fingers are still stubbornly weak so creating a totally flat hand and holding a cloth is still a work-in-progress.
- Apply my own lipstick without smudging it!
- Turn onto my side without help, but cannot YET wiggle my body into a comfortable position for sleeping.
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23 JANUARY 2016 – TWO YEARS AT HOME
I came home on 31 January 2014 after spending 4 months in ICU and 4,5 months in rehab. So here’s where I am after two years at home, from my starting point of only being able to sit upright for one hour and not being able to stand or lift my arms from the bed:
- Hands and arms mobile, range improving, and finger-tip grasp a little bit stronger. Not strong enough to hold a pen to write with, but I can hold a pen.
- Learning to “squat”. Can bend both knees simultaneously for about a 5cm bend while holding on to something. Yes, I did say “squat”. Rome wasn’t built, etc.
- Can walk up a short shallow ramp and a short steep ramp with my rollator, but need to rest my legs before tackling the 2nd ramp.
I’m grateful for the progress. Spare a thought for those people with MND and MS who are losing their strength while I regain mine.
I still have days where the slow progress frustrates me to the nth degree and my whole being weeps for the life I lost. My family and friends have been true pillars of support in this terrible journey.