CIDP-2024.2

CIDP (2024) (page 2/4)

(Chronic Inflammatory Demyelinating Polyneuropathy)

April 1/2024

Home Health Care.

Jim Pattison Centre for IVIG, day 1 of 2 (Gamunex).

April 2/2024

Jim Pattison Centre for IVIG, day 2 of 2 (Gamunex).

Todays post IVIG treat.

April 3/2024

Home Health Care.

Pure Form Physiotherapy for a session.

April 5/2024

Home Health Care; my foot.

My heal.

They changed my schedule from three times per week to
two times per week.

April 8/2024

Home Health Care.

April 9/2024

Pure Form Physiotherapy for a session.

April 11/2024

Lifelabs; diabetes & MDS bloodwork.

Home Health Care; my foot.

My heal; the scab is 90% off.

April 13/2024

Trying on my regular shoe.

The shoe was going well, so added the AFO.

April 14/2024

Switched to the white kicks.

April 15/2024

Home Health Care; my foot.

My heal; the last bit of scabbing fell off.

For the past few days, I have been walking around the house
without the off-loading shoe and with the 4-wheeled walker.

I still use the wheelchair when I go to appointments, but I think
I will get back to using the 4-wheeled walker when there isn't
a lot of walking involved.

As much as I hated wearing the off-loading shoe, I figured it
would help me with my balance. After not wearing it for the
past few days, I can say that it has helped.

Did a few laps around the bedroom using my cane.

The AFO goes around the shoe lace via a velcro strap, and
pulls up and stretches the lace. To minimize the stretching, I
cut the velcro strap so it would go around the lowest part of
the lace, which goes through a strap that is stitched to the shoe.

April 16/2024

Pure Form Physiotherapy for a session; used the walker.

April 18/2024

Home Health Care, with my walker.

My heal.

My foot.

Came out to this; did they even try to park properly? I was
parked to the left, in the disabled parking spot.

Hodgson Orthopetic; follow up on left foot orthotic. My
orthotist is happy with how things are healing and with
what I am doing. For now, we wait for my follow up with
the surgeon tomorrow, and go from there.

April 19/2024

Abbotsford Hospital wound care clinic; follow up on left
foot. My surgeon is happy with how the amputated area
and heal are healing, so he said his job is done. I will have
to keep an eye on things, and continue with Home Health
Care, but I can continue to walk more and get back
to doing my physiotherapy at Surrey Hospital. Woo-hoo!

April 20/2024

My freaky foot.

Due to my missing body parts and CIDP, here are the devices I need
to stand and walk; sneakers, prosthesis, AFO, and 4-wheeled walker.

My home PT has been going well the past week, mostly
exercises I can do sitting and laying. Today I started more
standing excersises, as well as the other ones. I almost
feel like (balance & walking) I was before the left foot
amputation, so that is good.

Spent 30 minutes or so in the garage puttering on my car
then drove it around the block to get a feel for driving;
been almost 1 year. I will be taking action to get my license
back in the next few weeks.

April 22/2024

Home Health Care; my foot. They are just putting a bandage
on to protect the area.

My heal. Same as my foot, just a bandage. No more padding.

Both areas were still completely dry, so I can continue with,
and slowly increase my standing/walking exercises.

Made a call and got the ball rolling on project "Get My
License Back". Stay tuned.

April 23/2024

Surrey Hospital Physio, phone call follow-up. I told my
therapist all the good news about how I am doing, and she
was happy to hear it. The plan is to give it a few more weeks,
where I will continue doing my home PT, then get in to see
her and get back to outpatient PT.

West Coast Retina Consultants.

When I got home, I went up the garage stairs leading with my
left (real) leg. I have been using my right (prosthetic) leg, as
it is stronger, so good to see lefty is building some strength
back. Lefty was my strong leg before CIDP.

As an amputee, the general rule is to lead with your real leg
when going up stairs, and lead with your prosthetic leg when
going down stairs. This is how I did stairs before CIDP.

I sat in two different chairs in the house; their design and height
prevented me from sitting in them. Now that I am regaining
strength, they are now on my growing list of things I can sit
on. I haven't sat in these chairs since getting CIDP.

April 24/2024

Pure Form Physiotherapy for a session.

My current home PT routine.

April 25/2024

Home Health Care; my foot.

My heal; no more bandage.

They put a bandage on my foot, but only to protect the scab
from getting torn off; I can take it off if I want. And I don't
need a bandage on my heal at all.

I am officially discharged from Home Health Care.

April 27/2024

Mom went to visit a friend, so she dropped me off at my place.
Spent about an hour there, put a few things away, moved
some things, walked for minutes on my treadmill, and layed
on my bed four times.

April 28/2024

Over the past week, one of my goals was to work my way up
to 1000 steps per day. I will continue with that goal over the
next week or so and monitor my foot. If it does ok, then I
will bump up the steps.

April 29/2024

Jim Pattison Centre for IVIG, day 1 of 2 (Gamunex).

Was doing some walking in the house, stopped to tighten
my AFO, and snap! She broke. Amazon special that lasted
about 3 months of use. The good thing is the velcro failed
a few weeks ago, and when I reached out to the seller, they
gave me a full refund. Then when I was at Hodgson a few
days later, they fixed the velcro for me, so I got some extra
use out of it.

My foot; changed the bandage. Also, been washing and
putting lotion on each night since not needing the bandage
on the heal.

April 30/2024

Jim Pattison Centre for IVIG, day 2 of 2 (Gamunex).

Today's post IVIG treat.

May 1/2024

Goal accomplished; minimum of 1000 steps per day.

Pure Form Physiotherapy for a session.

May 2/2024

Today marks the one year anniversary of me waking up in the
morning, not be able to move, taking an ambulance ride to
the ER, and being stuck in a hospital for five months. It has
been a long and difficult 365 days, but I went from being
bed ridden and needing a ceiling lift to move me, to being
able to stand, walk with a walker and do most basic things
in life. I have a long way to go in my rehabilitation, building
my strength, balance and walking, but I will keep at my
home physiotherapy, outpatient physiotherapy, and of course
my monthly IVIG sessions.

Me & CIDP Fun Facts

Motor Vehicles; got a temporary license for the on road
part of the drivers test. Didn't get an "L".

My new AFO arrived from Amazon.

Fits and works.

May 3/2024

Foot washed, lotioned and drying in the air.

The healing continues nicely.

Walking around the house with just my cane; 400 steps and counting.

The new AFO is easy to unhook so I can remove my shoe and
let lefty have a breath of fresh air.

Ended the day with 1122 steps without the walker.

May 4/2024

Today's goal is to not use the walker, at all, in the house.

Put my orthotic back in my left shoe; will help level my foot
out. Also, the height of my prosthesis was set with wearing
the orthotic, so it keeps my hips level.

Grabbed these spring o-rings off Amazon to make the AFO
work a little better.

They will make for a better & easier hook point for the AFO.

Perfect fit.

My new walking team; sneakers, AFO & a cane.

Goal met; used only the cane to walk in the house.

May 6/2024

Stepped onto the patio for the first time in over a year. Felt good
to sit outside, with a cool breeze blowing, and the resident
guard dog and guard turtle keeping me company.

JR Rehab Services, part 1 of drivers test, in class. Did cognitive
and physical testing, as well as a simulated driving reaction
test. I passed with flying colours. Now to wait 2 1/2 weeks to
take the road test.

May 8/2024

Pure Form Physiotherapy for a session.

May 9/2024

Wash and bandage change day.

Cut another piece of the scabbing off on the heal.

May 10/2024

Mom took me to my place for a few hours. We started
cleaning up my kitchen (getting rid of anything that was
old and expired), and I spent 5 minutes on my treadmill.

I have one small step to get into my place, which I have
easily done with the walker. Today I went up and down
with just my cane.

May 11/2024

Dad took me out to run a few errands, then dropped me off
at Tim Hortons where I had lunch with a couple of friends.
Was good to get out of the house and do some "normal"
life activities.

My normal routine when going out, has been to wheel to
the passenger door, get in the car, and let my driver put
the walker in the back of the car. For the past few days, I
have wheeled to the back of the car, then using the car for
balance, walk to the passenger door and get in. This
afternoon I also put the walker in the car myself.

And lastly, at one of todays stops, I stepped up on the
sidewalk, then down off the sidewalk, with the walker.

Bonus: Over the past few days, while walking inside the
house, I would barely use the cane; it would touch the
ground, but I would put mininal force on it. Today, while
walking in the house, I did 2 laps without the cane
touching the ground. Then after a break did 2 more. Then
after another break, did 2 more. That's (minimum) 600
steps without the cane for assistance.

May 12/2024

My prosthetic sleeve was bugging me yesterday and I ignored
it. Woke up to this. I have had this happen a few times over
the years.

This will let it breath and heal.

Happy Mothers Day mom!

What a difference from last mothers day.

My foot continuing to heal.

Total steps for the day.

Total steps without the walker; at least 600 were without
the cane.

Summary of total steps for the week. Should start seeing a
minimum of 2000 per day soon.

May 13/2024

Back to Surrey Hospital for Outpatient Physiotherapy;
haven't been since January. They were happy with my
progress and the home exercises I have been doing. They
tweaked and changed a few things in my routine, and we
agreed that I really don't need to come in to see them. I
will touch base with them in a month and go from there.

May 14/2024

My goal for the past few weeks has been to walk a minimum
of 1000 steps per day. I easily met that goal, typically doing
1300-1500. As the days went by, I got as high as 1700-1800.

Yesterday, I walked a total of 2739 steps (using walker &
cane combined), and 2020 of those were with just the cane.
Sunday was 2119 total, 1592 with the cane.

I will also note that on Sunday I got in a zone.....I did almost
600 steps without the cane touching the ground. It wasn't
pretty, but I was super happy about it. I haven't been in that
zone since, but I know it will happen again soon.

Today, I have only been out of bed for 4 hours and already
have done 1000 steps (no walker, cane only) and have done
45 minutes of my home PT routine. Seems I am in the groove!

I guess this is the week I set my minimum to 2000, but will
turn out to be closer to 3000. Sweet!

And done. Total daily steps with the walker & cane.

Total daily steps with just the cane.

May 15/2024

Pure Form Physiotherapy for a session. Left the walker
at home and used the cane only. Going up/down the "ramp"
to get on/off the sidewalk was sketchy, but I didn't die.

May 16/2024

The bed rail I have on loan from the Red Cross is coming
due for return in a few weeks. I have decided that I don't
think I need it anymore. For the past few weeks I have
tried not to use it, and have gotten our of bed with no issues.
I sub-conciously grab it sometimes, just because it is there.
The true test is to not have it there, so it is now sitting in
the garage. I will try life without it for a week or so and see
how it goes.

May 19/2024

Last weeks goal was to walk a minimum of 2000 steps per
day. I met that goal and then some, doing upwards of 2500
most days and close to 3000 on a couple of days.

Plus, I only used the walker first thing in the morning, when my
body is tight and I don't have my AFO on. Most of the steps
were with the cane only. I went to one appointment and to
my house to clean, with only my cane as well.

They weren't all pretty steps, but I'll take them.

This week's goal is 3000 steps minimum per day.

Mom took me over to my place again; did some more
cleaning. I chiseled a bunch of frost ice my deep freeze.

Foot and heal progress; cut a chunk of scabbing off the foot.

May 21/2024

For the past few weeks I have been wanting a white coloured
AFO, as the black one is so noticeable against my white skin.
They do not come in any colour other than black, so the
wheels in my brain got to turning. I thought about modifying
a sock, which led to tensor bandage. This morning, when I
opened my stash of medical supplies, I forgot that I had a
3' piece of medical tubular bandage. Bingo! I cut off 4", cut
a slit in it and tried it on. It does what I want; take the eye
away from the AFO.

Medical tubular bandage.

AFO: no cover vs cover.

West Coast Retina Consultants; went with only the cane.

May 22/2024

Pure Form Physiotherapy for a session.

May 23/2024

Foot. The last bit of scabbing came off, so will now be with
no bandage and see how it goes.

Heal. Due to some peeling skin, I put a small band-aid on
the are to help protect it.

My freaky foot.

May 24/2024

JR Rehab Services, part 2 of drivers test. Passed with flying
colours. Now to wait to hear back from RoadsafeBC on what
the next step is.

Fun fact; I'm 6'3", 230lbs, CIDP makes me struggle getting
up/down from low seating, and I got my fat a$$ in and out
of a stupid little Kia Forte. Check that off my bucket list.

May 26/2024

Accomplished last weeks goal of 3000 steps per day, and 99%
of these were with the cane. The next goal is to maintain
the 3000 steps and increase my home PT exercises.

Foot & heal. Running no bandages on either.

For months I have been using a leg cover when I shower,
to protect the bandages on my foot. Today was my
first shower with no leg cover on; Lefty enjoyed being
able to get wet in the shower again.

May 27/2024

Jim Pattison Centre for IVIG; hooked up and getting primed.

Privigen is today's brand.

Small bottle, big bottle.

Walked in and out with just the cane. It was rough coming
out, as the IVIG drains your energy, but I made it.

Later, I was wiped. More than normal. This session really
kicked my ass.

Amazon delivery; dust pan with a long handle & broom. Will
make cleaning that much easier.

May 28/2024

Jim Pattison Centre for IVIG; today's grab bag of Privigen.
Still low on energy, so brought the walker today.

Small bottle, big bottle.

After a few hours, I noticed some swelling around the infusion
site. I brought it to the nurses attention; I had "IV infiltration".
The needle came out of the vein and the IG was going
into my arm. They put a needle in my other arm (took 3 tries)
and continued on with the infusion.

6 month follow up with neurologist. He had a schedule
change, so he came down to see me while I was getting
my IVIG. He did his testing and we talked about how things
were going. He noticed improvement in most of his testing,
and will send me some video's on new exercises to work on
my weaknesses. Other than that, the old "keep doing what
you're doing", and we will follow up in six months.

My post IVIG treat; this one was well deserved.

May 29/2024

Pure Form Physiotherapy for a session.

My new rollator from Amazon arrived.

All assembled; with my low energy, this thing was exhausting to put together.

May 30/2024

Phone consult with cardiologist, as per my GP.

June 02/2024

Didn't meet my steps goal, but was to be expected. IVIG's
kicked my ass and my back was giving me grief.

A message from Apple Health. I haven't fallen yet, but thanks
for the vote of confidence.

Foot and heal continuing to get better.

June 04/2024

Returned the last of the Red Cross loaner equipment; 4-wheeled
walker and bed rail. That is the last of any loaner equipment.
I now own everything I will need.

June 5/2024

Vascular test at Royal Columbian Hospital; on my left leg.
This was set up by the vascular specialist I saw last October.

June 06/2024

Have a visitor for the weekend.

One of the rings on my shoe broke the other day.

Ordered up a new pack of coloured ones; went with dark blue
on the white shoes.

June 07/2024

Dog doing dog things.

June 08/2024

Time to relax.

My footcare nurse came by; gave lefty some care and attention.

June 9/2024

Everytime I lay down, I get a visitor. Hard to get things done.

Back on track meeting my weekly walking goal.

June 10/2024

Here we go again.

June 10/2024

Follow up, Surrey Hospital for Outpatient Physiotherapy.
Same as last time, she is happy with how I am doing, showed
me a few new exercises to help with my core, and will see me
again in four weeks.

June 11/2024

Lifelabs; MDS bloodwork.

June 13/2024

Pure Form Physiotherapy for a session.

June 14/2024

Follow up with vascular specialist. My test last week was all
good. I figured this would be the case because with all the
crap with my left foot over the past six months, all the
medical people said, "I feel a good pulse", and after the
amputation, the surgeon said I was a bleeder. He will follow
up with me in a year.

June 15/2024

Went to a celebration of life for my uncle. One hour drive to
get there, two hours of sitting, around 150 steps with the cane,
and a one hour drive home. I was wiped when I got home, so
layed down and rested. Felt better after an hour so got up
and got my daily walking in.

June 16/2024