CIDP-2023

CIDP (2023)

(Chronic Inflammatory Demyelinating Polyneuropathy)

May 2/2023

On May 2/2023, I checked into Langley Hospital. I spent two weeks there before being transferred to Surrey Hospital's Neurological Services Unit. It took them four weeks, but determined that I had CIDP, and boy was I a mess. My muscles basically reset to zero, and my brain was foggy for almost six weeks.

I was immobile and stuck in bed, and they used the ceiling lift to move me around. As I gained some strength, I started sitting in a wheelchair, but due to chronic backpain from the CIDP, I could only last for 30 minutes or so. They got me doing physiotherapy, and where the focus was on standing, but worked on all my muscles as well as fine motor skills.

I didn't keep track of much in the early stages due to the brain fog, and as I got some strength back I was focussed on gettingbetter. As I got better, I started tracking more of my story.

Langley Hospital: 2 weeks.
Surrey Hospital: 10 weeks.
Queens Park Care Centre: 9 weeks.
Recovery at home: ongoing.....

Dad's pictures

Jump to 2024.

June 19/2023

My room in Surrey Hospital where I was for over two months.

I had water retention in my left arm and leg; this started last year.

July 1/2023

Directions to my room.

July 7/2023

Practicing (assisted) standing in physio.

July 20/2023

The clock in my room; note the second hand.

July 22/2023

Google Earth view of Queens Park Care Centre, where I am
as of July 20.

July 25/2023

Got covid, so was moved to a private room with a nice view.

August 15/2023

Off to the Jim Pattison Centre for my IVIG; 3 days, 3 hours per day.

August 18/2023

In physio, did a bunch of "sit to stand" from the table (28" tall) to the
sara stedy, then my first try on the recumbent bike for 10 minutes.

A fellow patient made this for me; it is for good luck.

August 23/2023

In physio today I got to take some steps between the parallel bars. Felt so
good, but so exhausting.

August 25/2023

Another physio session of steps between the parallel bars. Walked forward
and backward, then 10 minutes on the recumbent bike. Great way to end the week.

August 30/2023

In physio today I did more steps between the parallel bars. My sit-to-stand was
getting much better, so we went to my room where I practiced (twice):
wheelchair->walker->bed
bed->walker->wheelchair
And once:
wheelchair->walker->comode
comode->walker->wheelchair
It went great and the sara stedy is no longer needed. Yay!

September 1/2023

In physio, did a few longer walks in the walker. Then later, did several
transfers from the wheelchair to bed, on my own.

Got moved back to my old room, but got a window seat this time.

Had a 1 ply prosthetic sock go missing during the move.

September 2/2023

Got on the commode with no assistance, and was finally able to
wipe my own ass.

September 3/2023

Had no help getting up this morning; got dressed and cleaned up all
on my own. A few hours later, I went into the bathroom in the
wheelchair, stood up using the commode for balance, and pee'd
standing up.

Getting up and going to the bathroom in a normal way was one of
my goals, as it is a big step in getting out of rehab. I am so excited to
have reached the goals! The bad part is now I seldom see the staff.

September 5/2023

My mobility status was changed to independent, and I just need
supervision when using the 2 wheeled walker.

September 7/2023

Mom brought in my old "bum stool" so my physiotherapist could
see it. In physio she saw it and she was impressed with it, so
practiced going up 2 steps with it.

The bum stool, as seen in my parents garage.

Occupational therapy did a "Bathroom Assessment" of me. First in the
bathroom in my room, then to the end of the hall to a "mock bathroom"
where I sat in the shower seat like I was showering, stood back up and
walked back to my room. This was all using the 2 wheeled walker.

Round 2 of physiotherapy was my first standing class. Exhausting, but
exactly what I need to stregthen my legs.

And for my final physio session today, 20 minutes on the recumbent bike.

September 8/2023

Day 2 of having 5 classes throughout the day. Love it.

September 11/2023

Occupational therapy did a "Kitchen Assessment" of me. Wheeled to
another unit where the "mock kitchen" was, then moved around the
kitchen using two hands on the counter for balance. Used the sink,
opened the fridge, filled a kettle, opened upper and lower cabinets.
Basically simulating things you would do in the kitchen. Then I
walked from one end of the counter using only one hand on the counter
for balance. This was all very exhausting, but felt so good as I see me
strength and balance getting better. The therapist was very happy
with my performance.

September 12/2023

It's IVIG time again at the Jim Pattison Centre; 3 days, 3 hours per day.

September 13/2023

Dad made some stair spacers to help me work on doing stairs.

Confirmed! I get a weekend pass this weekend, and as long as there are
no issues with that, I will be released on the 21st. One week to go!

September 15/2023

Physio today was some leg strength exercises that I can do at home,
then stepped up the 4" rise stairs (3 steps) a few times.

Occupational Therapy did another kitchen assessment, which
was more about walking aside the counter using only one hand for balance.

Mom and dad picked me up around 3:30 and took me to their place
where I will spend the weekennd.

September 16/2023

Mom went and picked some loaner equipment from the Red Cross; the
bed-rail wasn't designed for modern day matress'.

September 18/2023

The weekend pass was great. No issues doing things, but the 3 stairs
from the garage are a bit of a problem due to lack of leg strength.
That will take more time and physio.

September 19/2023

Physio today was showing what I can do; getting out of bed from either
side, standing and balancing, timed short distances walking with the
walker, and lastly how far could I walk before getting tired (made it
about 170' before my hip started screaming at me).
I met all expectations.

OT did a re-test on my finger, hand & arm strength, as well as some fine
motor skills tests. We saw improvments in all areas, so that was good
to see.

I ordered a new walker off Amazon. It arrived at the house yesterday
and dad got it assembled for me today.

September 20/2023

In physio I worked on standing and balance, then stairs. I walked up
the 4" rise stairs (3 steps) with a quad cane, leading with my right leg
(stronger). Going down, I led with my left leg, but mid step it gave out,
so I gracefully fell down, landing on my butt on the top step. No harm
done, so my therapist picked me up and I climbed the stairs again,
then came down backwards, leading with my right leg. Repeated this
4 times with no issues, so I call that a success.

Due to a few medical issues (low blood pressure & water retention),
the doctor is moving my release date to Friday. I agree with the
decision, but I hope we figure things out as I would rather not spend
the weekend here.

September 21/2023

Back to the Jim Pattison Centre, but this time to the hematology
department. I could have MDS (Myelodysplastic Syndrome), but
need to monitor my blood over the next several months.

September 22/2023

Last day at Queens Park. Did the morning exercise class, then physio
made me practice on the stairs. After that I packed up most of my
belongings, then waited for my transport team.

Amazing how much junk you accumulate in two months.

My chariot is here (mom & dad in my ride).

My home for the next several months.

September 23/2023

Amazon order arrived; tools for strengthening my fingers/hands.

September 24/2023

For the past five months, I've had a bed sore on my left heal. Four weeks
ago my foot nurse saw it, and asked why nothing was being done about it.
After I mentioned this to the hospital staff, they started putting iodine
strips and bandages on it. To this date, it is still healing and needs to
be re-dressed every few days.

Now that I am out of the hospital, I had to go down to Home Health Care to
have the heal re-dressed. This will repeat every two days until it gets better.

The hospital gave me iodosorb to put on it.

September 28/2023

Westcoast Retina Consultants.

September 30/2023

Me going down the garage stairs.

Me going up the garage stairs.

October 1/2023

Went to my place (first time being there in 5 months) with mom and
dad. Did a little cleaning and packed up some food that needed to
be used up. I pushed my limits in the walker (on purpouse), but
it felt good.

October 3/2023

Went to see a vascular specialist regarding my left leg/foot and the
swelling. He wasn't overly concerned, but will refer me to RCH for
further testing, and wrote me a prescription for compression socks.

October 4/2023

Went to Nightingale Medical Supplies in Langley to get my
compression socks. This style was recommended as the best
option with the wound on my heal. I have a white pair on
order as well, which should be here early next week.

Can't have mis-matching socks. Luckily I have some black
ankle-hi's for stumpy to wear.

Mom came home with a treat.

This is from a family friend; thank you Nancy.

This is from my parents. Thank you mom and dad.

October 5/2023

Went to Pure Form Physiotherapy in Langley to get an assessment.
I will be seeing them once per week for 30 minute sessions.

Went to Beyond Physiotherapy in Surrey to get an assessment;
they have a Motek C-Mill Virtual Reality Therapy system,
and I got to try it out. I will be seeing them twice per week
for 60 minute sessions.

Getting on the C-Mill machine.

October 10/2023

IVIG time again at the Jim Pattison Centre; 3 days, 3 hours per day.

Picked up my white compression socks.

October 11/2023

Had a physio session at Pure Form Physiotherapy, then to JP for IVIG.

My new shirt; Polyneuropothy & Polyradiculoneuropothy are
basically the same thing.

October 12/2023

JP for IVIG.

October 13/2023

Beyond Physiotherapy for a session then Home Health Care
for the heal.

October 14/2023

For the past week or so, I've been taking a few steps with the
quad cane. Today I used it to go to the bathroom, which is
around 30 steps round trip.

October 15/2023

Dad added a railing to the right side of the garage stairs. This
means I don't need the walker or quad cane to go up/down them.

October 16/2023

Lifelabs for bloodwork to monitor the MDS and a session at
Beyond Physiotherapy.

October 17/2023

Health Care for the heal.

October 18/2023

Pure Form Physiotherapy for a session.

Got home from physio and went up the stairs without any riser
blocks, leading with my right leg (prosthetic). Having handrails
on both sides makes such a difference, as well as some increased
leg strength.

October 20/2023

Beyond Physiotherapy for a session.

October 21/2023

Health Care for the heal. The wound is looking good so they
discharged me and I can take care of it on my own.

When we got back home, I sat in the drivers seat of my car
to see if I am able to drive; I am. Now to get my doctor to
sign off on it.

October 23/2023

Beyond Physiotherapy for a session.

October 25/2023

Beyond Physiotherapy for a session.

October 26/2023

Pure Form Physiotherapy for a session.

Amazon delivery; a foot drop brace and a compression
sock donner.

October 27/2023

Picked up a 4-wheeled walker from the Red Cross. This will
eventually replace the wheelchair when I go out for appointments.

October 30/2023

Beyond Physiotherapy for a session.

October 31/2023

Long pants and the drop foot brace.

Westcoast Retina Consultants.

November 1/2023

Beyond Physiotherapy for a session.

November 2/2023

Pure Form Physiotherapy for a session.

November 6/2023

Beyond Physiotherapy for a session.

Apparently I did some walking today (4-wheeled walker).

November 7/2023

Back to the Jim Pattison Centre, but this time to the neurology
department for an EMG (electromyography) test and follow up
with my neurologist. The EMG show's improvement (I could
feel the difference) and my neurologist was happy with how
I am doing (he last saw me in May).

November 8/2023

Pure Form Physiotherapy for a session.

November 9/2023

Flu shot.

November 10/2023

Beyond Physiotherapy for a session.

November 12/2023

Starting on Monday (6th), my goal was to walk a minimum of
2000(with the 4-wheeled walker)steps per day.

November 13/2023

Foot care nurse.

Did a few laps of the house with my old cane. It was hard, but
much easier than a few weeks ago.

November 14/2023

Beyond Physiotherapy for a session.

Jim Pattison Centre for IVIG; over 2 days, not 3 like previously.
50mg today.

November 15/2023

Jim Pattison Centre for IVIG. 45mg today.

November 16/2023

Pure Form Physiotherapy for a session.

November 17/2023

Saw my Dr. about getting my drivers license back.

Beyond Physiotherapy for a session.

November 17/2023

Amazon delivery; sock doffer.

November 18/2023

Some of the equipment I use or have used.....

Bought this sock donner (from Amazon) before I got out of the
hospital. It works great on my ankle socks, but does not work
on the compression socks.

Reacher-grabber with rotating jaws and adjustable shaft.

Wheelchair; on loan from the Red Cross.

4-wheeled walker; on loan from the Red Cross.

Cane; I've had this for several years.

Quad cane; on loan from the Red Cross.

Did around 1400 steps in the house using the 4-wheeled walker,
then switch to the cane.....

Ended the day with 1513 steps using the cane and 3349 steps
for the day.

November 19/2023

Last weeks steps, mostly with the 4-wheeled walker.
The goal is a minimum of 2000 per day.

November 20/2023

Beyond Physiotherapy for a session.

November 21/2023

Home Health Care; I have a new blister on my left foot.

November 22/2023

Pure Form Physiotherapy for a session.

November 23/2023

Hodgson Orthopetics for a tune up.

Prosthetic: lengthened a bit, ground back of socket for better
clearance, new sleeve and valve cleaned.

Orthotic: clearanced on the sides and ball of foot.

November 24/2023

Beyond Physiotherapy for a session.

November 27/2023

Beyond Physiotherapy for a session.

November 28/2023

The blister on my foot.

November 29/2023

Pure Form Physiotherapy for a session.
Surrey Hospital for my Outpatient Physiotherapy Assessment.

December 1/2023

Follow up with GP on the foot blister; prescribed fucidin cream.

Beyond Physiotherapy for a session.

December 5/2023

Westcoast Retina Consultants.

December 6/2023

Pure Form Physiotherapy for a session.

December 8/2023

Beyond Physiotherapy for a session.

Got an early birthday present from my parents; Pure Elements
Percussion Massager from Costco.

The blister on my left foot is starting to peel; we cut this part off.

December 10/2023

Got a call from Home Health Care, following up on my left
foot blister. They were able to get me in today for a quick
visit. They cut off some sluff and dressed it with inadine and
a bandage. They sent me home with some supplies so I
can change it every 2-3 days, and they will try and get me
booked in when they can; could be a week or so.

December 11/2023

Jim Pattison Centre for IVIG.

December 12/2023

Jim Pattison Centre for IVIG.

December 13/2023

Surrey Hospital for Outpatient Physiotherapy.

December 14/2023

Pure Form Physiotherapy for a session.

Picked up a few new pieces of exercise equipment.

December 15/2023

Lifelabs: bloodwork to monitor the MDS.

December 16/2023

The blister has gotten larger, wound on my heal is almost gone.

December 17/2023

Went to my place to pick up a few things. In my mail was a letter
from RoadSafetyBC. They need to determine my medical
fitness to drive, so I need to take an FDE (functional driving
evaluation), which consists of an in-clinic assessment
and an on-road assessment. From there I may still have to
take an ERA (enhanced road assessment), or an ICBC
road test re-examination.

December 18/2023

Home Health Care.

December 19/2023

Valley Medical Imaging for an x-ray of my foot.

Pure Form Physiotherapy for a session.

When I got home from physio, I got behind the wheel and did
a few laps of the complex (private property) to get a better
feel for my driving abilities. All was good, just need more
seat time to get my groove back. With the arthritis in my hip
being how it is right now, getting in and out of the car was the
hardest part.