Tuesday, September 27, 2022

Tuesday, September 27th, 2022

Recovery, second time around ...


So, a day ago, my neurologist explained to me that I have Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) - a rare condition that arises when the myelin sheaths around certain peripheral nerves become damaged. This causes muscle weakness and impaired motor control. It is a form of GBS ( Guillain-Barré syndrome )

In some cases, you can treat CIDP. By controlling inflammation, it may be possible to slow or stop the progression of the condition and alleviate symptoms. Without treatment, CIDP can lead to permanent neurological damage.

CIDP occurs due to damage to myelin. Myelin is the insulating layer of tissue that surrounds nerve cells. It helps ensure that signals from the brain are rapidly transmitted to the proper places in the body.

When myelin becomes damaged or destroyed, it can lead to problems with communication between the brain and the body.

With CIDP, there is chronic demyelination of areas of the peripheral nerves. This can be constant, or it can periodically worsen and improve.

This inflammation damages peripheral nerves, but not the brain or spinal cord. While CIDP is sometimes associated with inflammatory or autoimmune conditions, medical professionals do not know the exact cause.

Conditions that may contribute to the development of CIDP include:

  • autoimmune conditions, which are conditions in which the immune system attacks healthy tissue
  • inflammatory bowel disease, including ulcerative colitis and Crohn’s disease
  • acquired immunodeficiencies, such as HIV infection
  • thyrotoxicosis, which is an excess of thyroid hormone in the body
  • systemic lupus erythematosus, which is the most common type of lupus
  • lymphoma and monoclonal gammopathy of undetermined significance, a condition that causes elevated levels of a certain protein in your blood
  • POEMS syndrome, a rare blood disorder that affects multiple areas of the body, including the nervous system
  • cholangiocarcinoma, which is cancer of the bile ducts
  • melanoma, which is the most serious type of skin cancer
  • carcinoma, a type of cancer that can cause a complication of the nervous system, leading to CIDP
  • graft-versus-host disease, a condition in which donor cells attack recipient tissue after a transplant

Viruses that may occur before an episode of CIDP include:

  • influenza
  • HIV
  • hepatitis A, B, and C
  • Mycoplasma pneumoniae, which causes lung infection
  • Epstein-Barr virus
  • Campylobacter jejuni, which causes food poisoning
  • cytomegalovirus

Other possible risk factors for CIDP include:

  • being in the postpartum period following pregnancy
  • having had recent surgery
  • having had a solid organ or bone marrow transplantation
  • getting vaccinations for swine influenza, influenza, meningococcus, rabies, hepatitis B, and tetanus toxoid

Treatment for CIDP focuses on controlling symptoms and slowing the progression of the condition. There are numerous treatment options available, and up to 80% of people respond to one or more CIDP therapies that modify the immune system.

Treatments for CIDP include:

  • corticosteroids, such as prednisone and prednisolone, to reduce inflammation
  • immunosuppressant drugs to prevent the immune system from attacking the myelin sheath
  • IV immunoglobulin therapy
  • plasma exchange for short-term improvement of symptoms
  • physical therapy to help with motor ability

Friday, September 09, 2022

Starting around September 1st - I am experiencing a setback at the moment, hoping AIDP is what I have ( a form of Guillain–Barré Syndrome ) and not CIPD. With AIPD, you get bit, the after IVIG and Plasmapheresis you just need to recover ( Myelin needs to grow back - normally 6 to 18 months for full recovery )

They are treating my sudden weakness from knee down - which was not present at all in Feb when I was first admitted to the hospital. I was there a month and a half, unable to move my hips and thighs. But by Late July - I was about 80% back functioning on left and 85% back to normal on the right.

In August - I was only using the cane for the stairs, walking everywhere without a cane - but now back to using the walker full time.

Because my Left leg was weaker than my right,I was walking like John Wayne, which really aggravated my Sacroiliac joint on my left side, which then developed into sciatica. Pain in the mornings especially are intense.

I fell September 2nd and poked a hole in the wall going up stairs. I am now confined to staying downstairs.

 

Sept 6th Wednesday – visited my neurologist Dr. Mi she prescribed Methylprednisolone MG Dosepk - 6 day regimen. UGH. Like any heavy steroid ( Prednisone like ) it reduces inflammation - but AMPS YOU UP. So - not sleeping well because of the Med - will be happy when this is DONE. 

She also prescribed I do another round of IVIG ( 4 infusions, either outpatient or in ) which we will find out Monday, Sept 12 ( depends on what the insurance provider accepts )

I am part Viking and mostly Neanderthal ( you can tell by how furry I am ) - so, I will beat this !

Tuesday, July 26, 2022

July 25th

STAIRS !
I can climb stairs and even take a shower standing up now !



Saturday, July 16, 2022

 July 14th, 2022

FINALLY !!!!

Still a little bit wobbly, but "LOOK MA, NO HANDS !"



Monday, June 27, 2022

June 23, 2022

There was a time when I 
could not even lift my feet into the pedals, 
the staff at Physical Therapy had to do that for me.

And even with no resistance, 
I could only muster like 4 steps a min.



Now I am at 3.5 resistance and can do 100 steps per min - 
I can do 8 mins then I start slowing 
( they ask me to do 5 min, but I always do more ! )


Thursday, June 16, 2022

June 15th, 2022

I am now able to walk with a CANE !

SO HAPPY !




Took and Uber to visit my direct Tony Tarpey for dinner at the Golden Bull in Santa Monica, CA


Monday, June 06, 2022

June 6th 2022.

I can actually walk while holding my walker off the ground. Well, okay, not really walking well, kinda hobbling, but this is a VAST improvement since my last blog post !





Tuesday, May 24, 2022

Today, May 24th 2022.

Walking better !




Wednesday, May 04, 2022

Today - May 4th, 2022 ( do not pay attention to what I say in the YouTube recording, I was in SHOCK and got both the MONTH AND THE DAY wrong! ) - I was so amazed that THIS HAPPENED !

I have been working with my Physical Therapist ( Chris ) who visits me at our home and we have been working on standing on a walker ( I have been wheelchair only since Feb 24th ) and today, he asked "lets try taking a step" - and the video below - that is the THIRD time I walked with the walker today ( after the first time, I sat down and cried ) - anyway - MILESTONE !



Monday, April 18, 2022

I have been home for 2 weeks now !

Getting a little stronger each day, and discovering I can move things in certain ways I could not do the day before - so, progress is wicked slow, but progress each day is a great sign ! 

Exciting development today - my besties Michael Fister and his wife Mary Noland rented a van and drove way out to Yorba Linda, CA to pick up a Standing Frame that I found on Craigslist

They delivered that today and now I am up up and away ( or at least, standing ! )

 --- we have affectionally named "The Beast"... in case you were wondering, it is manufactured by Prime Engineering in Fresno, CA, and this device is called the Grandstand III MMS 

The way it works is you fasten a seat like harness while in the wheelchair, then use a Hydraulic Lift Mechanism driven by a handle to pump the person up into a standing position.

This way I can work on strengthening my legs !


Tuesday, April 05, 2022

C-Mill Therapy


Here at the Northridge Hospital Medical Center Physical Therapy unit, there is this system here called the C-Mill - they place a harness on me and hoist me up over this treadmill, then lower me enough that I have about 1/2 of my weight bearing on my legs, and I then walk. It is not pretty, but I am getting better.


My stats are below the image of the C-Mill.



Here I am on the C-Mill !



They may release me today - then I will come here 2 times a week for outpatient Physical Therapy while we wait while my effected nerves re-grow the myelin sheaths.

That process can take 2 to 4 months.




Saturday, March 19, 2022

Plasmapheresis

We did the first session ( of 5 ) of the Plasma exchange (plasmapheresis) at Northridge Hospital Medical Center last night.


The liquid portion of part of your blood (plasma) is removed and separated from your blood cells.

The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed.


Plasmapheresis may work by ridding plasma of certain antibodies that contribute to the immune system's attack on the peripheral nerves.

What was it like? Entirely painless - but it was 5 hours of being placed in a walk in freezer.

I guess when they pump all your warm blood out of your body through tubes go between you and a machine that is 4 feet away and the room temp is 68 degrees that cools the blood - so, dang, they could not pile enough warm blankets on my to stop me from shivering ( picture was taken at the very beginning of the process. }

4 more to go !

Monday, March 14, 2022

Got bit by AIDP - a type of Guillain-Barre syndrome

Update on yet another episode of the crazy happenings in the world of Michael Jahn!

I have been admitted to Northridge Hospital Medical Center here in California since Feb 24, ( the care here is AMAZING BTW ) and I will probably be here in Physical Therapy for one or two more weeks.

Currently, I can't stand up without assistance or a device ( in the image, I am using a Sabina lift ) - can't walk yet but am working hard to regain that ability. 

AIDP 

Somewhat rare. 0.89 per 100,000 people.

Basically, our nerves are like copper wires and the myelin is the rubber coating  around the nerves - and I contracted a virus that removed the myelin in my lower spine - and now the nerves that communicate to move my core ( hips mostly ) glutes and quads ( muscles in the fount of the legs ) are not working - but starting to recover. I have been in PT for a week  so far while my nerves repair and begin to communicate with my hip and leg muscles

Recovery is unpredictable - it can take months sometimes. Hoping to be released once Ii can use a walker. CRAZY. Everything else is working fine, and lucky to have a lot of upper body strength still ( thank you Gymnastics in HS and University of Illinois ! )

The Hospital has great WiFi so, lucky for me I can work between PT sessions !

Other than this temporary set back, all is well.

You can't beat three square meals as day delivered to your bed each day and 4 sessions of Physical therapy !

Will be doing a dialysis type procedure called plasmapheresis as my diagnosis is AIDP which is a form of Guillain-Barre syndrome. I have already done the Immunoglobulin therapy which has helped me regain some movement - working hard !

And I am 220 ( down from 250 ) so looking quite svelte these days !


Tuesday, January 25, 2022

Big heart felt fun in Simi Valley California!

Welp - there is a first time for everything I guess ! 

I had my first heart attack on Monday January 17th, 2022. It was a mild one - thought it was indigestion, but then the same symptom happened a second time - so, drove myself to the ER. They did a blood draw, and sure enough, there was the telling enzyme ( troponins ) indicating I had a heart attack.

So, was admitted - they did an angiogram, showed me the blockage ( they twilight you, do not knock you out ) and then put in a stent in my central circumflex coronary artery. The entire procedure from them rolling me from my room to the OR, then back took less than 45 minutes - modern medicine at its best - Thank you Northridge Hospital Medical Center !


I was released to go home the very next day and feel great !