CIDP RECOVERY IMPAIRED MOBILITY TO ABLE-BODIED?
- Apr 5, 2019
- 36 min read
Updated: 4 days ago
WHATEVER IT TAKES
KEEP GOING
CIDP & RECOVERY?
There is a famous expression in English:
'When the going gets tough, the tough get going'
–meaning when the situation becomes difficult, the strong will work harder to meet the challenge. Sometimes, when we are in a tough situation, an inspirational quote or saying can help us calm down and focus on what we need to do.
Quote On Life
"Whether you think you can
or you think you can't,
you're right".
Henry Ford (1863-1947)
Ford's quote could be applied to life in general. Have a positive or a negative outlook. It's up to you.
'It's not rare if it happens to you'.
Traveldriven quote
WHAT IS CHRONIC
INFLAMMATORY DEMYELINATING POLYNEUROPATHY
UNDERSTANDING CHRONIC
INFLAMMATORY DEMYELINATING POLNEUROPATHY
SIGNS OF AND EXPLANATION OF
CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY
OUR PAINTBALL GROUP
SNIPERS DEN MELBOURNE
I second from left as a
lefthanded paintball shooter
THE OPPONENT'S CHINESE SOLDIERS?
First and only paintball experience. Great day out by all on a hot Melbourne day. We received many hits and returned many back. Eight weeks before CIDP diagnosis.
CONNIE & WAYNE ON HOLIDAY
HAPPIER TIMES
AFTER HOSPITAL DISCHARGE
& HOME WITH CIDP
My CIDP recovery journey is written below. Living with a rare serious condition from before the onset of the COVID-19 pandemic. Hopefully the worst of CIDP is now behind.
In 2019, after hospitalisation for CIDP, a personal decision was made to work on and expand the Traveldriven website over the long term. This choice was primarily driven by the need to stay occupied during an unknown period of impaired physical immobility.
The aim was to engage both mind and body. In a positive way. A realisation was that if any significant recovery was to occur it may take years. After CIDP hospitalisation hand dexterity along with normal touch sensation were some of the first physical functions to return.
Fortunately, I had basic touch-typing skills.
Initially this helped to gradually regain hand and finger coordination whilst also creating an online website. One step at a time through trial and error with no prior website design experience. The hope was to build something useful and relevant to myself and others. The goal was to give purpose to the many days and months of CIDP recovery, (if it happened) that lay ahead.
Try to maintain a positive outlook with keeping busy. As imagined, a hard thing to do when physically very limited for the foreseeable future.
At times, website building was the only daily focus.
Below is primarily published with a view to help other's recently GBS/CIDP diagnosed. An in-depth dive into CIDP for such people. The story written by me as a self-improvement reference. How CIDP changed life in general and for those interested in rare conditions from a non-medical perspective. A factual account. No embellishment needed. As those with CIDP would no doubt agree with.
There are virtually no online non-medical long term personal points-of-view to be found about CIDP. The following is a personal perspective based on first-hand experience with CIDP, detailing at first the weekly progression. It primarily highlights positive developments over the ensuing months and years.
9,116 words 35 minutes read
Chronic Inflammatory
Demyelinating Polyneuropathy
An immune system disorder.
The myelin sheath of peripheral nerves is damaged. In my opinion, CIDP brings much uncertainty. Saintly patience is required for nerve self-repair. If any repair does occur, it often will take years. CIDP-damaged nerves exhibit a variety of unique symptoms.
Following is one individual's perspective.
I live in a small regional city. Located in Victoria, Australia. It is January of 2019 no health issues and fifty-nine years of age. I am working as a food industry employee on the factory floor involving physical work and long periods of standing. Although physically demanding work, I had no problem carrying out work duties. I thought I should get a doctor's check-up. Something didn't feel right.
Affecting Daily Life
A General Practitioner appointment was booked. I explained to the GP I was experiencing numb toes and tingle sensations. The gist of the consultation was to come back if things did not improve in three or four weeks.
Shortly thereafter, a weekend day drive to a coastal tourist town near to the famous Great Ocean Road in Victoria left me wondering how safe my driving was. I own two sedans. One manual and one automatic. Driving my automatic transmission car in the busy main street I stopped in traffic. A car behind and a car in front. I depressed my right foot on the brake unaware the side of my foot was still on the accelerator pedal. Smelling tyre smoke and hearing the car's engine revving I quickly switched the ignition off.
I realised I did not have enough feeling in my feet to feel the pedals. An accident avoided and a cautious drive home.
Acupuncture?
It was suggested acupuncture may be beneficial. Unsure of driving ability. I travelled almost three hours by train to the Melbourne inner suburb of Footscray. With a newly acquired hobbling gait, I walked from the train station to the appointment no more than two short city streets away. Sceptically, I agreed on a two-hour consultation. The Chinese acupuncturist, an older man with a tenuous grasp of the English language at best, inserted needles in both my feet and upon withdrawal all were bent at right angles. The acupuncturist commented the normal needle curvature was severely bent out of shape on all needles. Evidence of extremely taunt tendons. He recommended daily use of a foot spa, the spa water diluted with straight whisky and a further two weekly sessions.
Feet submerged in bubbling whisky and water. An incredulous recommendation in my opinion.
I returned to my home unconvinced acupuncture made any difference. I felt no different after the one acupuncture session. I declined two further expensive sessions. I did buy a bottle of Jim Beam discounted on sale. I already owned an unused foot spa. I used it once as recommended. I drank the bulk of the whisky over several dinners. An entertaining story.
In an Immobile State & Past Trauma
I was struggling to lift my feet for no apparent reason. All my fingers tingled and all my toes felt numb. Accessing my automatic car parked in my driveway, I stumbled completely backwards and fell on my lawn. Fortunately, I didn't hurt myself. Not a misstep. But all leg strength momentarily lost. Soon thereafter on another occasion I went out for coffee drinks at a local café with a few family members. We were sitting at an inside table. I raised my beverage in one hand and gripped around the mug’s handle ready to drink. Instead, l spilled the full mug of hot cappuccino coffee over my shirt and table and there was spillage onto the floor. I could see looks of astonishment in those around me. I felt the same. Suddenly experiencing very weak hand grip coordination for no reason. A concerning development I had no answer for.
Within two weeks I returned to my local GP for a second appointment. The doctor referred me to a Melbourne neurologist a few hours' drive away. The first appointment was for ten days' time in Ballarat. This is a large regional city in Victoria. Apparently a visiting Melbourne neurologist attends a consulting room once per month. I spent the time waiting housebound and unable to work. It took six attempts to park my automatic car in the garage behind the roller door. Now unable to drive safely. In these days following my second GP visit both my leg strength and self-balance was deteriorating. I had lost feeling in both feet and my gait was unstable and weakening. At times I had to steady my walking with hands placed on walls inside my house. No public transport is available where I live. I live alone as my wife of twenty-three years passed away with breast cancer two years before.
Connie, my wife, would have been whole heartily supportive one hundred percent, as I would of her.
Waiting for Medical Help
Now, nearly two years later I needed to see a specialist. What is it? At least I knew I didn't have cancer. I have no home support. Several days after my second GP appointment I could barely walk around inside my home. I telephoned the Melbourne neurologist's reception twice and tried to bring the appointment date forward. I offered to get myself to the Melbourne clinic as my condition was deteriorating. My walking is becoming weaker. Reception replied the original appointment was the earliest date and all earlier times were fully booked. I asked if I could speak to the neurologist. 'No, he's with a patient'. Ok, so I waited at home with a stoic attitude thinking everything will be ok after a week or two of rest and time off work. I didn't think a further GP appointment would be helpful anymore. I thought I would get through the weekend, then go to my specialist neurology appointment scheduled by the end of the week. My respiratory condition felt normal during this time.
A further five days passed housebound and I was then driven to my neurologist appointment. I attended a medical consulting clinic used by visiting Melbourne specialists. Located in Ballarat. Well over an hour's drive away. Upon seeing myself struggling to walk and assessing absent nerve reflexes the neurologist, who was a prominent specialist in his field, immediately admitted me to St Vincent's Hospital Melbourne. He telephoned the hospital on the spot. Luckily, I carried a small overnight case. I was allowed no time to return home to pack a bag. I was told by the neurologist no medical transportation was available to convey me to hospital, but I must go directly and immediately to hospital. Upon hearing this my driver, a family member, kindly agreed to drive me without delay to the Melbourne hospital. A further one and a half hours' drive and one hundred and twenty kilometres away. I distinctly remember the neurologist telling me I think you have GBS or CIDP. ‘Let's hope not CIDP’. Of course, I was clueless of these remarks. I, like many, not realising the serious health implications of these unheard of conditions.
In both Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy one's own healthy immune system turns rogue and attacks the peripheral nerves. Both are classified as autoimmune disorders. GBS is seen as an acute disorder occurring once only and is of a relatively short duration. CIDP is the chronic counterpart of GBS. Both can strike anyone, male or female and at any age.
Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy have the same symptoms on presentation to a neurologist. Also, identical treatment.
Unknown Cause of Symptoms, Work Difficulty
CIDP origins are idiopathic, (unknown). However, one online United States research paper documented a small cluster of GBS/CIDP cases among workers in a piggery attributed to Campylobacter Jejuni. This is a bacterial infection and may be transmitted via slaughtered pig, sheep or chicken.
Medical publications such as the National Library of Medicine, Journal of Neuroimmunology etc, cite up to 40% of those diagnosed with GBS/CIDP showed an infection with Campylobacter in the few weeks prior to symptoms appearing as the result of the onset of nerve demyelination. Nerve demyelination symptoms such as numbness, tingling and weakness in all limbs.
No Campylobacter was found in the many blood tests I had in the hospital. I don't recall having common symptoms of Campylobacter. The short answer is I never had a Campylobacter infection. Although I can't state this with one hundred percent certainty.
Medical literature cites livestock workers with a positive viral infection to Campylobacter Jejuni have a one in a one thousand chance of acquiring GBS or CIDP. For the general population there is a one in a one hundred thousand chance of acquiring GBS/CIDP with no exposure to livestock.
Hospitalisation ♿
On the drive to the hospital, I realised this is to be my first hospital admission as a patient in over forty years. Thinking probably, it will be a few weeks until I return home and back to work. Looking back with hindsight it’s fortunate to be naive and not know what might lay ahead.
I began intravenous immunoglobulin (IVIG) infusion of Privigen that night, Friday. A mixture of purified antibodies and donated blood plasma. Each infusion takes about three to four hours. Administered through a catheter needle inserted into a vein in the arm to overwhelm the immune system's own antibodies attacking the nerves. In the following days I was moved to another ward. The third consecutive day of IVIG and a late finish of 3 am ending the loading dose of IVIG treatment.
Symptoms, Not Good
Here I was, experiencing extreme walking difficulty. A patient in a multi bed public ward. I could do little more than observe the surrounding hospital routines. Doctors, nurses, patients and visitors. With sometimes a dose of chaos mixed in.
An adjacent patient was visited by a female family member. During one of her visits she collapsed creating an emergency situation. Nursing staff immediately called for doctors and issued a loud PA emergency announcement. Doctors in their white coats came out of nowhere huddling around the collapsed visitor now unresponsive. The blonde woman was laid down on the hospital bed previously occupied by the brother she was there to visit. Rather frail in appearance. He looked no more than forty years of age. He is sitting by the bedside as they both had been out of the building to smoke a cigarette and returned. The reason why she collapsed was extremely low blood sugar levels. A diabetic emergency. The woman was stabilised after a good amount of time passed and admitted to hospital on another floor for overnight observation. An odd pair, her brother was always unwilling to engage in conversation with those around and he presented a general defensive posture.
In the meantime, all of this commotion delayed the commencement of my IVIG infusion by several hours. As mentioned to a 3 am finish. Within days I had a lumbar puncture (spinal tap) showing mild elevated protein levels. An orderly pushed me in a wheelchair down to the hospital's first floor where a nerve conduction study was undertaken in a small room. Lit with defused lighting and strong rays of sunlight filtering through partially drawn blinds. The muted sound of city traffic passing outside. Two electrodes were placed on each limb to measure nerve responses. I was clueless of the process and didn't ask questions. Staying silent. Graph printouts were examined. The two medical technicians involved in the study discussed findings between themselves.
I gathered that the nerve conduction study showed total and partial blockage on major leg nerves. Symmetrical left and right of the body. I was returned via wheelchair to my ward. During the next few days multiple blood tests and other tests were carried out. One doctor told me a blood sample was sent to far off Western Australia for analysis in a laboratory. Apparently testing for this one particular pathogen could only be undertaken in Perth. Why? I don't know! The result returned negative. Good. All tests showed no evidence of recent viral or bacterial infections. Nothing. I hadn’t been out of the country for years to catch some exotic disease. No illness, not even a dose of the flu or a cold. How can you become so disabled and not know the cause? This is a concerning thought to anyone. Greatly mystifying to me!
Disabled and Bleak Outlook
All the staff treated me well. I could not walk and was dependent on a wheelchair. A walking frame provided some standing support for very limited room use. I was experiencing a complete loss of self-balance. Numb from backside and legs down. No leg reflexes. Significant paralysis of all four limbs. Acute abdominal tightness caused moderate breathing constriction. I was tested twice daily for breathing capacity in anticipation I needed artificial breathing assistance via a ventilator. I was administered daily stomach injections to prevent blood clots because of immobility. I have always been a non-smoker. I took solace in this. Additional complications I could do without. I could hold light weight items such as a spoon, fork and knife but all were extremely hard to use. I was unable to open served food or drink lids. Could not write or use a mobile (cell) phone, use buttons and zippers, tie laces or hold a small cup of coffee in one hand.
One doctor asked me to count how many of his fingers were held up in front of my face. I counted correctly. Previously there were initially a few instances where vision was blurry but then vision quickly came into focus again. I kept this alarming thought of possible deteriorating vision to myself. My eyesight never gave me problems in the past. Always having quite good vision. There was mild shortness of breath due to tightness felt around the torso. What is happening? How bad can things get? With some anxiety I wondered will I lose the ability to breathe freely? Torso tightness later fluctuated between severe and moderate and was felt daily over the initial few years. I was relieved no airway ventilation was ever required.
Facial movements were unaffected. No suggestion of Bell’s Palsy. A condition that affects facial nerves. No indication of Multiple Sclerosis, Parkinson's Disease or Motor Neuron Disease. All these conditions I have heard of.
No further Deterioration
Doctors asked if I could wiggle my toes up and down. To everyone's surprise. I was able to. I was asked if I was able to stand beside my hospital bed. Assisted by staff and total reliance upon a walker with great effort I managed to stand. A doctor requested me to push against his upper body with an open hand and with as much force as I could muster. Are you sure? I asked. Yes, to test upper body strength. Alright then, surrounded by a few doctors I pushed my outstretched hand against him and nearly pinned him to the wall a couple of steps back. There was a somewhat perplexed look returned. A bit of an unexpected result indicating that I still retained some upper body strength. Although I found it impossible to lift my feet more than a few centimetres, or if you like to imagine just an inch, off of the floor due to leg weakness and a lack of balance.
My condition did not deteriorate any further after the first few days while in hospital. By week's end doctors assessed my condition as somewhat stable. With mutual agreement my public hospital bed was moved to other wards five times during my lengthy hospitalisation. Even down a floor to another ward. All wards were at near to full capacity. I was stable and under supervision.
I was later advised by doctors that the first course of IVIG probably stalled the progression of CIDP. I understood progression meant breathing reliance on a ventilator machine and total immobility before likely incremental improvement.
Specialist Consensus and First Symptom?
I agreed to be wheeled in my wheelchair to the once every Friday specialist meeting. The rock star treatment! Lol. On an overhead projector my condition and possible diagnosis was discussed in front of twenty or so experts including the department head Professor of Neurology. Doctors posed questions with pen and notebook in hand. I answered what I knew. At the conclusion of this gathering of medical specialists I was returning by wheelchair to the wards via a lift when quite unexpectedly another person in the lift recognised me and said, Hello how are you? I immediately knew it was the neurologist I saw in Ballarat who admitted me to this very hospital. I said considering everything that's happened recently I was as good as can be expected. I also said see you later up in the hospital ward. He bid me farewell and left the lift. This was the last sight of him until a return appointment from home to the Ballarat medical clinic some months later. Unbeknown to me apparently, he was only available for private patients in the hospital environment. No public patient visitations were to be expected. Was this normal practice in the Australian public hospital system? I didn’t know if that was the case. IVIG infusions are free to Australian residents so long as the criteria is met and signed off by a neurologist once every twelve months for continuing treatment.
Specialists later diagnosed CIDP and not GBS as my symptoms were at least eight weeks. The onset of GBS from perfectly healthy to bedridden is usually within days or is almost always under a fortnight. CIDP onset is always much longer being eight weeks at the earliest or much greater in time. A little more than two months before diagnosis I paid for a family paintball day in Melbourne. My legs gave way underneath me on short sprints. No pain. Just momentarily weak legs. I thought this odd and amusing at the time. I attributed this to overworking myself. Even then during the long drive from Melbourne to home l felt a small amount of leg weakness. In hindsight, the first symptom of CIDP that I can recall. Normally I don't jog. St Vincent's Hospital Melbourne had no other patients with GBS or CIDP. Both are rare conditions. Apparently, there is a one in one hundred thousand chance of a diagnosis of CIDP.
Long Term Hospitalisation Concerns
The isolation of a big city hospital away from familiar faces is very confronting. Initially on arrival I was placed in the intensive care neurology unit with a row of many seriously ill people. Many patients post operative and bedridden. Their shaven heads are covered in long tracks of medical suturing (stitching). A very sobering sight. Medical equipment monitoring everybody. Soon thereafter thankfully I was moved to the ward where as previously described, the woman collapsing with a Hipo was visiting her brother.
On one of my five moves to different wards an adjacent patient had suffered a mild stroke and was up and about unassisted walking, talking and using all four limbs very well within a few days. A likeable person with a glass half full attitude. Acknowledging he was a lucky man. Not so for myself, diagnosed with a crippling condition. Prognosis unknown.
During my hospital stay my only regular visitor was a weekly visit from a volunteer inter-church counsellor. These visits were really helpful and appreciated. Otherwise, I had no one to confide in. No visitors. Just a very brief single visit from a family member. After a month passed, another family member paid me a full day visit. I was pushed around the large hospital city block in my wheelchair. Along busy Victoria Parade avoiding able-bodied pedestrians going about their busy daily routines. We stopped for a light lunch. A non-bedside meal was great.
It can't be understated how terrific it felt to feel the fresh air and warm sun on your face after one month inside. Even if I was in a wheelchair. I’m wondering if this is permanent now? A drastic turn of life events unfolding right before my eyes. Over the preceding month I gradually came to realise I would likely have lifelong wheelchair dependency. One gets a totally different perception on life from a wheelchair. Is it a permanent part of life now? Who knows! Medical staff were not telling anything. Not wanting to give false hope.
One morning reaching for my trusty bedside walker I slipped off of the bed and onto the floor. Unseen by nursing staff. Heavily supported by the bedframe. I managed to pull myself up. Luckily I was ok. Mentally scolding myself. Don’t let it happen again! The walker was required to shuffle to the ward shower once daily. I am only able to twist shower taps a fraction of a turn. Dribbling the shower water freely over me. Now my arms and hands are too weak to grasp and hold shower utensils. Although it was offered, I didn’t want nursing assistance.
What a predicament to be in. Weak as a baby.
Autonomic nervous system dysfunction can occur with CIDP. In my case, hints of autonomic system involvement appeared but thankfully no progression occurred. These serious symptoms range from incapacity to breathe, double vision and sight deterioration with optic nerve damage, bowel & bladder dysfunction, total loss of ambulatory function and cardiac irregularities. All due to nerve and muscle interactions within the body. Symptoms as mentioned may or may not occur. Hence, why my five week hospitalisation and medical specialist uncertainty.
I googled as much as l could about CIDP with fumbling hands. Countless times the phone fell out of my grasp and more often than not I’m unable to enter search words with one finger. Loss of finger and hand dexterity caused repeated failed attempts. At home sitting by the desktop computer I could touch type. An impossible task now. Even if I had a full size keyboard.
I am barely able to access and view phone photos. For all practical purposes confined to a hospital ward bed. Accompanied by a bedside walker that I was reluctant to use because of extreme difficulty.
A ward patient startled the life out of me. In the early hours I opened my eyes to see a fellow in a dressing gown sitting on a chair in the corner of the multi bed ward. He explained it’s too hard to gain sleep. So he stayed awake all night thinking. Thinking about his health and future. He survived a cardio scare. That’s why he was here. Too concerned to sleep. The two of us are strangers. Both of us up for a chat in the very early morning. It’s a very long day when I wake early and gain sleep late at night. Compounded by the inability to move about freely, or at all and the difficulty to access media by phone.
Inpatient Rehabilitation 💦
I spent five weeks in St Vincent's Hospital Melbourne followed by nearly a week of inpatient rehabilitation. In a facility even further from home in the eastern suburbs of Melbourne. I wrongly interpreted my transfer was meant to be to Ballarat and closer to home. I misunderstood the brief conversation in the rushed hospital environment where everybody is a stranger. Train of thought interrupted by major upheaval and disruption to daily life. Understandable considering the circumstances. Once the misunderstanding was sorted. I was transferred to the eastern suburbs rehabilitation facility. Once there I discovered the ability to use a walker for short inside walks. I watched through the window from my hospital bed a pair of hot air balloons very low above buildings. Nightly tv news said they made an emergency landing nearby. I thought at least these people had access to the outdoors and were not confined to a hospital. Transferred again. This time I was transferred to Ballarat and to a large regional rehabilitation facility. I was driven there by an ambulance. I sat next to the driver for the two hour trip. It was encouraging that I could actually sit as a passenger and be able to get in and out of the passenger seat unassisted.
Fellow Patients
There was another patient in the back of the ambulance for the entire drive. A sedated female stroke patient, by appearances not yet at retirement age, nearing end of life. We drove her to the same palliative care facility where my
wife spent her last weeks. The palliative building was adjoined to the rehabilitation complex. It was a solemn two hour ride for me. The driver focused on driving and offering little conversation. Not that I felt like chatting. I didn’t mention I had been to the palliative care facility once before.
Walker and Red Tape
I was admitted to rehab. and to my surprise given my own room. By appearances just like the hospital wards I was all too familiar with. A staff member wrapped my walker handles with red tape. Red tape is replaced with green tape once walking is assessed as safe unsupervised. I was mixed in with recovering stroke and cardiology patients. I spent regular physio sessions among patients clumsily sliding Domino pieces around table tops. Myself more advanced than those with stroke recovery. I began creatively and carefully building a multi level square house from a pile of Domino pieces. Only for it to suddenly collapse under fumbling fingers. Fellow participants enquiring how I was able to do that? I replied I was here not because of a cardiac episode or a stroke. Of course no one had heard of Chronic Inflammatory Demyelinating Polyneuropathy. Both my hands and feet are equally affected by CIDP induced peripheral neuropathy. Can I eventually learn to walk normally unaided? CIDP uncertainty plays mind games with you.
Twice a day in the early morning and mid evening l decided to attempt a circuit walk around the ward corridors and nursing station. Outside of structured daily physiotherapy sessions. Against the red tape supervision rules. I felt competent enough as long as I used a wheeled walker. I am not normally one to go against guidelines. I wanted to be proactive. I decided I would pay heed to the advice if questioned. Pushing my walker my hope was to progress from red to green tape. My aim was to complete ten laps. All exhausting work. Rolling past other inpatient rooms. People such as Mark, who was paraplegic from a diving accident and found it hard to face the day. Bed sheets pulled over his body and head. Thinking I'm not wheelchair dependent anymore as I was nearly two months before and now able to use a walker these last seven days. I self-recalled a road trip to Townsville Queensland. How fortunate Max the pilot and I were from the Tiger Moth joy flight forced landing on the then under construction Mackay Ring Road in 2018 with a broken crankshaft sustaining no injuries. Especially spinal injuries like Mark. Thinking of the inhouse gym physio sessions both Mark and I attended. He is in his wheelchair. Apparently, a potential fate I have now avoided twice within the space of twelve months. I rolled my walker past the longest inpatient resident. Leslie, a double amputee. One amputated foot and one amputated arm past the elbow. He wanted the rehab. facility to become his permanent home. Of course this is not allowed. I rolled past the recreation area with its chairs, television and a bookcase of overflowing books and assorted magazines. I rolled past the unattended nursing station and turned back toward the wards.
Medical Prognosis Is Unable To Be Given
Towards the end of my rehab two female physiotherapy staff were to take me to an adjoining building with a two storey stairwell. A formidable structure in my mind. Attempting the stairwell was very exhausting. I was supported all the while taking small steps and resting legs. Descending the stairs is more of a problem than struggling up to the top. Could have taken a cut lunch with the time it took. Still, it was something achieved. Physiotherapy staff were faultless guiding and physically supporting me on how to walk. They dealt with my strong safety concerns, poor expectations and inability to get a prognosis. Self-balance was still a major issue.
Once every four weeks I received a 40g IVIG infusion of Privigen. The initial loading dosage was calculated by patient weight. All future dosages were unchanged even with weight variability. Taken daily, an Azathioprine (immunosuppressant) tablet. Given to counter progression of CIDP.
Green Tape Approval
All attending doctors were unable to provide a prognosis.
Using my walker in rehabilitation, now authorised with green tape I asked a visiting neurologist if this is true. I garnered information from Google. Inquiring from my rehabilitation ward bed. One third of CIDP patients are wheelchair bound for life. One third recover to near their former self and one third are somewhere in between. CIDP by definition is often characterised by a relapsing – remitting course. The severity and duration is unknown. The neurologist nodded in agreement and replied I wasn't in a wheelchair anymore. I also now thought at least I could walk with a walking frame and green tape. Will this be the new normal? A walking stick wrapped with red or green tape is still far beyond my capability.
Unease on Ability for Future Home Self Care
In an adjacent ward a recovering stroke patient was due to be discharged in the next few days and suffered a lengthy seizure becoming unconscious. Drugs were administered to him to regain consciousness. Not exactly instilling in me the confidence of the rehab. centre’s assessment on my readiness for my imminent discharge. I was wondering how I will cope by myself at home? No at home Care Plan was planned or established by the medical profession. My thoughts were that future welfare dependency was inevitable.
One of the facilities visitors was the minister of my local church. A coincidence chance meeting. With myself pushing a wheeled walking frame together we attended the adjoining palliative care facility to give thanks again to staff from two years ago. But the familiar staff I remembered had moved on. The Minister's comforting presence and support was greatly appreciated. I was visited only once in Ballarat Rehab.
Day Pass Out Refused
A longtime friend agreed to drive me home and back for a day on an upcoming weekend. This meant a return drive of three hours. However, on presentation to the main entry reception the facility person-in-charge refused me a pass out. I was judged too high a risk to be given a pass out due to the current summer heat wave conditions. With disappointment prevailing. I apologised to my driver for the wasted long drive. I would have liked a short one day break from the hospital environment. Now unable due to doctor's orders.
I was approaching two months of unbroken hospital stays and still I cannot return home. Within another week I was discharged.
Chronic Inflammatory Demyelinating Polyneuropathy
Google searches in hospital and rehabilitation did allow me to flush out CDIP knowledge. Once discharged I began an arduous task gathering a list of questions to discuss with my neurologist on the next forthcoming appointment in Ballarat. This second appointment is still months away.
CIDP is a rare neurological disorder and targets your body's nerves all of which interact with the muscles within the body. Symptoms vary widely among individuals. Characterised by progressive weakness and impaired sensory function in both legs, feet, arms and hands. Weakened respiratory muscles are a common symptom.
CIDP prevalence is approximately 600 people in any one year in Australia of a population of 27 million.
Not hereditary nor infectious. Not a psychiatric or nervous disorder. There is inflammation of nerves and nerve damage primarily to the insulating myelin sheaths around nerve fibres. Classified as an autoimmune disease. The disease may occur at any age. More so in older adults beyond fifty years old.
There is no known cause of why the immune system attacks the nerves of otherwise healthy people. A positive diagnosis of CIDP is possible with evidence of damage to peripheral nerve myelin from nerve conduction tests and a lumbar puncture. Quadriplegia and or respiratory failure causing death has been cited in rare instances. Guillain-Barre Syndrome (GBS) is regarded as the acute form of the condition. Rapid onset of symptoms distinguishes GBS from CIDP. Symptoms remain chronic for CIDP. The attack on my health is now identified by name. I now was aware my symptoms meant a diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy.
Hospital Rehabilitation Discharge 😀
I required home help with housework and to be driven about. I was physically incapable of driving. A home help service was made available usually once per week for the following several months and was provided by local government providers. Prior to approval and following rehabilitation discharge, I needed to seek out and enquire if I met eligibility requirements for this health service. I was told I did meet eligibility. However, there was a monthly fee payable. Also, I qualified for long term podiatry services for a nominal fee. I was thankful for services provided even if it was at a personal cost.
In the months after hospital discharge, I used a walking frame with just a walking stick on very brief occasions. My duration of home help care was uncertain.
Home Self Care Struggle
It was a big struggle to walk. Collect mail from my front yard letterbox. Feed Millie the cat, and 'Tag', a seven year old Fox Terrier dog in the backyard in the initial four months. These four months and many thereafter everything touched was literally like coarse sandpaper. All finger tips upon any contact conveyed a sensation like touching a continuous roll of rough sandpaper. Even to pat the dog and cat. Abnormal nerve activity that never abated. How inexplicable to me. It's quite debilitating to one's wellbeing when you can't enjoy a normal pat on the dog or cat. There was great difficulty twisting household taps and dressing daily. I enrolled in physiotherapy as an outpatient Also hydrotherapy. Unable to write in a legible manner. A little embarrassed about this I signed an X on the paperwork. Staff assured me considering my difficulty in grasping a pen that an x was acceptable. Staff were flexible on my course of physiotherapy and the program was tailored to my needs. My physiotherapy program was extended on multiple occasions. Walking severely restricted by weakened legs, peripheral neuropathy of both hands and feet, (paraesthesia) and CIDP induced severe tightness around the torso. Symmetrical left and right of the torso. Torso tightness may be described as banding, tapering to the spine.
Local Hospital IVIG Infusions
My local hospital provided monthly IVIG Privigen infusions in their Oncology centre. For people unfamiliar in the setting. A comfortable armchair style infusion chair is provided accompanied with an IV bag and solutions and an infusion pump monitor; this is a portable machine on a stand with its clickety-clack rhythmic beat set to an adjustable programmed flow rate by nursing staff. In due course the old iv pumps were replaced with new silent models. Oncology staff offer patients freshly cut sandwiches and a choice of cold or hot drinks such as juice, tea or coffee. Staff occasionally tempt people with scones and fresh cream. Initially during my first local infusion appointments I was just grateful to hold a hot beverage in two hands and open the lid of a small plastic sandwich pack. I remembered my repeated failed frustrating attempts just a few months previously. One infusion day coincided with my approaching birthday. No need to change dates. I viewed it as just another day. No cake or candles for me.
All infusions are carried out in the same wards, with the same familiar nursing staff and the same infusion method my wife received for cancer chemo treatment. The same familiar medical equipment. Two years on. Here I am. Surrounded by everything I wanted to forget. In my mind cancer kills and CIDP cripples. Me, a distressed witness of prior circumstance. I was back in the same environment and building. I reminded myself it's all for the best and left it at that. Accepting the hard physical and mental health challenges that I knew lay ahead.
Poor Ambulatory Function
I was struggling with poor ambulatory function longer than seven months post diagnosis. For example, the assistance of three people was required to descend a vehicle dealership's long flight of stairs. Assistance was required from the front, back, side and guidance of the guard rail with frequent stops. As I lived alone and struggled daily with CIDP I considered applying for Meals On Wheels. I gathered I did not fit the age criteria for the service. On occasion a family friend, who was a prominent member of a local church, delivered a cooked meal. I greatly appreciated it.
More than nine months passed and I was in-effect housebound and isolated. In the latter half of 2019 my mobility had improved and I was not entirely housebound anymore. Medical approval was given to drive a private motor vehicle subject to future review. On the eve of the Covid-19 lockdowns of a five km radius from home. Bitter sweet timing as I have always been a driving enthusiast. Thankfully, driving a private vehicle was not permanently revoked such as all commercial and volunteer driving was.
Covid-19 With Virtual Reality & Build A Website
Initially during the first twelve months there were abnormal unpleasant foot sensations of crawling ants. Also on legs and sometimes arms to doubt one's sanity. I did not develop hand tremors, leg cramps or have noticeable foot drop.
I confronted significant immobility struggles and home isolation in the twelve months preceding the COVID-19 pandemic. As I was immunocompromised COVID-19 vaccines were required. Four injections were completed. I was aware that in the most dire of Covid-19 hospital patients, a hyperactivated immune system triggers a cytokine storm in the lungs, a life-threatening condition. Twelve months of weekly outpatient physiotherapy sessions were COVID-19 interrupted and eventually stopped all together. I needed to think outside the box to address isolation, boredom and limited mobility during COVID-19 and frequent Victoria state wide lockdowns. I purchased Virtual Reality hardware and software for the home desktop pc. I watched 3d movies in a VR cinema. VR offered a very real feeling of freedom, experiences and escape from over twelve months of CIDP immobility. I navigated isolation issues of COVID-19 without infection. I told myself to keep busy for my mental health. Psychically and physically busy when possible. I continued developing my own road trips website. Self-taught through trial and error. A project essential to keep myself occupied in a quiet house. This was the only constructive activity on multiple days. Especially in the initial twelve months.
Mental Health
I was made aware of a free twelve month government counselling program made available for people to boost their mental health during Covid-19. Although I was fine. I thought this may be a good program for me to view as insurance. In the event I suffered a total CIDP relapse. So I signed up. The female counsellor was supportive and for one hour once every three weeks a local consulting clinic was attended. Home appointments were also approved. I used the service as an outlet to express CIDP concerns and to maintain a positive attitude. Although beneficial, I viewed it as irrelevant unless I had a total CIDP relapse back to square one. I viewed the program as my insurance backup. A positive strategy if the worst occurred again. Unfortunately, CIDP is always full of uncertainty for everybody. No prognosis can be assumed. Needless to say, maintaining a positive mindframe is very important. Difficult to achieve by yourself without some outside support. For those with faith or a willingness to accept. Religious and secular communities are there for reassurance, and practical help. To me this service was invaluable for the weeks and months I spent in hospital as previously mentioned. Don’t ignore support when an opportunity arises.
CIDP Five Year Summary
The National Library of Medicine (USA) has available scientific literature online of a small study detailing the long term prognosis of chronic inflammatory demyelinating polyneuropathy. A five year follow up of thirty-eight cases with no comorbidities. Source is from, Journal of Neurology, Neurosurgery & Psychiatry. An informative paper the layperson can largely understand.
Following is a five year summary after my CIDP diagnosis and subsequent IVIG infusions. The ongoing purpose of infusions is to maintain patient ambulation while encouraging a healthy autoimmune response to the peripheral nervous system.
Since late of 2021 no mobility aids or home assists were required. I have no comorbidities with CIDP. Chronic peripheral neuropathy is commonly associated with diabetes. I am not diabetic nor pre-diabetic.
Nerve Pain 😨
No muscle atrophy developed. This is an encouraging sign. Although persistent daily neuropathic pain was experienced for three years in the torso and feet. No nerve pain medications were offered. Tempting to ask for but I didn’t want prescription addiction. This was not out of a sense of a noble thing to do. I know high dosage long-term pain prescriptions are decremental to health. With the benefit of hindsight some nerve pain medication should have been requested and taken. Nursing staff occasionally ask patients the level of pain felt on a scale of one to ten. Ten being unbearable and one no pain. I felt about six\seven or higher with my nerve damage. Is this an over exaggeration? Well, there were times lasting up to an hour or so that lying flat on the loungeroom couch at home and staying perfectly immobile was my only option. My own ad hoc positive strategy without prescription meds. Albeit with hindsight, not recommended. At times it seemed like the only option to keep daily flaring nerve pain at bay. Some may seek comfort in alcohol as a pain release. I viewed alcohol as a poison to the nerves. Creating more problems if abused. A few glasses is enough at most.
Meds should have been requested. Prescription opioids, no thanks. I always tried to focus on pain misdirection instead. Do light activities for the mind and body to push invasive nerve pain aside. It’s surprising how effective this method can be when put to the test. Another major factor in the decision not to take nerve pain medications was the on-going ability to maintain uninterrupted nightly sleep. This was a great unexpected bonus. How was it possible? After random daily flaring of nerve pain. I don't have the answers.
Nerve pain abated somewhat after three to four years. Yes this is a lengthy time. At least it happened. Perhaps down to a two or three on the pain threshold? No separate health issues.
Twelve Months Post Diagnosis
& Twelve Apostles
In the summer months. Having gained driving approval I wanted to drive to the Gibson Steps. These are within sight of the world famous Twelve Apostles. The Twelve Apostles are one of the most visited sites in Australia. The most significant and sought after attraction along Victoria’s Great Ocean Road. There is a wide and relatively short flat walkway from the Twelve Apostles Visitor Centre to the viewing area. However, I wanted a greater challenge to test my leg strength after twelve months of gradual improvement. Perhaps driving to the coast is too much of a test. I was about to find out for myself. I drove solo to the Gibson Steps. A journey of under three hours. Ensuring I stopped for multiple roadside rest breaks.
Gibson Steps
The plan. Descend down the Gibson Steps cliffside walkway and return back to the top. These steps, meticulously carved into the rugged cliffside, provide visitors with a unique opportunity to descend to the pristine beach below, offering a close encounter with the raw beauty of the coastline. I am a little apprehensive not really knowing if I would require assistance on return to the top. I had been to these steps before I developed symptoms of CIDP. About eighteen months prior. When I was one hundred percent able-bodied.
Leaving the cliffside carpark I walked to the top of the steps where a visitor's bench provided seating with expansive views over the beach below and out to sea. I took a moment to breathe in the salty air, feel the cool ocean breeze on skin and began my slow descent guided by the accompanying guide rail for support. As you navigate your way down the Gibson Steps from the clifftop carpark, numbering near the hundred, the sheer magnitude of the towering cliffs to one’s side and the vast expanse of the Southern Ocean stretching out before you create a truly awe-inspiring experience. My legs noticeably weakened every two dozen steps or so. Stoppage for a break. Then continuing downwards. The final oversize cut stone step onto the sandy beach offering the most trouble. Hesitating to go left or right. Stepping onto the hot sand with a sense of achievement. Resting at least thirty minutes. No help was required. I was contemplating the return. A few tourists wandered about the sandy beach. The rhythmic sound of turbulent waves breaking on the reef strewn foreshore some fifty metres away. Now I was confident I didn’t need assistance to return. On the return with multiple stoppages for resting legs, the climb back to the top although extremely exhausting was manageable. A huge personal achievement. Proving a ' have a go’ mindset is helpful in boosting mobility confidence.
Three To Four Years Living With CIDP
During the initial three years. The need to rest extremely fatigued legs and arms whilst attending appointments, in supermarket queues and public places. Three years of short daily showering and brief house tasks for the same reasons.
This brought a forced change in personal presentation. Velcro strap running shoes with no laces. A sock puller for dressing. Trousers and shorts without zippers and buttons. Buttonless shirts. No zippered pullovers nor jackets. I was effectively forced into early labour force retirement.
Three plus years to get to near normality. I've always enjoyed driving. Great to not feel significant under the ribcage wincing from torso tightness, (abdominal nerves inflammation?) over every minor highway jolt and bump. It's been more than three years and now I'm also able to walk up to 45 minutes. Initially 15 minutes then to 45. Will this be maintained! Or will I relapse? If not irreparably damaged. Self-nerve repair is possible.
During 2022 I wanted to see for myself if my driving ability was up to standard and satisfactory at this time. I completed a thirty-minute driver experience on the Bend Motorsport Park racetrack in my road registered vehicle. A Mustang GT with a six-speed manual transmission. Tough on fatigued legs but safe. Fortunately, all went well and it was a great boost to driving confidence. The full thirty minutes was completed.
People say you look well and move reasonably. Yeah well, looks are deceiving with CIDP. One busy long weekend after alighting from my performance car I received loud verbal abuse from an outside dining café patron for parking in a disabled parking bay. The displayed permit unseen. I replied, ‘I have CIDP. Look it up on Google. It 'll scare the hell out of you’. A war between nerves and invisible antibodies throughout most of your body remains unseen to all.
Neurologist Appointments and Tests 👍
Undertaken not more than once every twelve months by a neurologist a nerve conduction study revealed improvements in lower limb nerve conduction and functionality. Small improvements greater than fifty months from diagnosis were still achievable. These improvements were not really felt in a practical sense. Indicating further improvements are possible after fifty months. If there is no active nerve demyelination.
By way of an explanation. A nerve conduction study involves the combination of two electrodes placed on the skin of an arm or leg above a length of a nerve and electrical conduction is measured between the electrodes. Multiple nerves may be tested. The person quite often experiences a small amount of discomfort when the brief electrical shocks are applied. The shocks are low voltage and so are harmless to anyone.
Support Group
I considered joining an Inflammatory Neuropathy Support Group. A google search revealed one such group in the eastern suburbs of Melbourne. The nearest group to my home. It’s been over four years and I haven’t met anybody diagnosed with GBS or CIDP. Maybe it's about time I did. Legally I was cleared to drive. A drive to the far side of Melbourne and potentially heavy traffic in a city of five million left me with a feeling of trepidation. Travelling by train wasn’t practical. Upon enquiry, all meetings scheduled every few months always fell on an early Sunday afternoon. Solo and with no backup driver I decided to attend a two hour meeting. For me the drive was over Westgate Bridge and through the road tunnels on freeways to the eastern suburbs. Meetings are held in a room of a suburban library. Upon arrival all are greeted by the group organisers. Tables, chairs, light snacks and drinks are provided. Meetings are attended by perhaps fifteen to twenty-five people.
I was by far the longest traveller in the group. A diverse gathering. Young adults to advanced age and all levels of physical disability. A few wheelchair equipped. All in attendance were introduced and name tags adhered on clothing. Every meeting has an invited guest speaker relevant to the field of rare neuropathy conditions. Fields such as nursing, rehabilitation and neurology specialists. Especially relating to GBS and CIDP. I was taken aback by meeting new people and not having to explain CIDP. Many share their individual stories. One man a little younger than me was on double crutches. He had a CIDP diagnosis and said he was amazed I drove so far to attend. I explained my recovery to the present time and his face lit up in hope. Realising he may be able to get back to driving. The benefits of attending such a support group should not be underestimated. People gain insight and encouragement. In a friendly environment.
Living With CIDP
On approaching five years of CIDP. These residual symptoms include: moderate symmetrical and ceaseless tingling felt underneath both feet. Mild tingling in the hands. Mild torso tightness and mild symmetrical weakness in legs. Normal touch sensitivity in hands and feet has long returned. Taking a daily tablet of Azathioprine has ceased.
Obviously, no progression or relapse. Discontinuation of IVIG is unlikely? In my opinion, it is a medical specialist decision!
Know one’s limitations. This is particularly good advice on physical disabilities such as CIDP. Be realistic. On the other hand, don't dismiss what life offers. If not permanently bedridden be grateful. The saying, 'There's always someone worse off than you’ is still relevant. Acknowledging this. The obvious answer is to endeavor to focus the mind forward not backward. Although it’s easier said than done.
One Hand Coffee
CIDP is not predisposed by any prior physical, mental health or lifestyle attributes. It is not hereditary or contagious. It's a rare condition. General Practitioners rarely see it, if at all. All of the above gives an insight into CIDP. At least as applicable to one individual's experience. Hopefully all the aforementioned addresses a lack of awareness and knowledge of Chronic Inflammatory Demyelinating Polyneuropathy.
My IVIG Privigen infusion of 40g is administered once every eight weeks. It was initially every four for several years, then extended to six weeks then out to eight weeks. Treatments such as IVIG infusion, plasma exchange and corticosteroids are available to neurologists for consideration. In my opinion it is best to seek, evaluate and trust answers from specialists.
During March 2026 a nerve conduction study showed marked improvement of motor nerves responsible for controlling muscle strength. These nerves in turn play a pivotal role in mobility. This latest study was completed by my neurologist of seven years. He candidly expressed his opinion of his thoughts. A frank candid admission referring to my initial hospitalisation in Melbourne of seven years previously. Admitting that back then he thought future daily wheelchair dependency was my likely CIDP pathway. I thought this myself at the time. Now in 2026 he is recommending a six month trial suspension of IVIG infusions. Infusions will not resume if all goes well. Although, he noted, tingling sensory nerves are unlikely to improve. Another nerve conduction study to be conducted in six months. Not the usual twelve month interval. Then perhaps all is finished.
Seven years of regular infusions in an oncology centre is a long time. I estimate more than seventy IVIG infusions. Now I will be freed of the medical environment. Freedom from infusion schedules. My final IVIG infusion scheduling falls on the day before Good Friday. Infusions usually are of a three hour duration. More good news. In the days preceding Easter, medical notification was received there is to be no final infusion. Easter is a worldwide celebration in Christianity. I can celebrate the end of seven years of Oncology attendance.
All things considered; full quality of life has returned.
Time to reflect on my CIDP experience. From diagnosis to now. Once again, it’s great to feel the freedom of walking unassisted inside my own home. Walking freely in the front and backyard. Operate my lawnmower without multiple rest breaks. Enjoy long drives in the diverse Australian countryside.
In Victoria, enjoy driving the Great Ocean Road.
Be able to enjoy everyday pleasures we take for granted. Pleasures such as a daily morning coffee.
A one hand coffee.
I often smile while holding a hot coffee. Why?
While the hot coffee may taste great.
It’s even better to be able to hold the full mug in
one hand.
A CIDP diagnosis and pathway is full of uncertainty for all. Don't dwell on anything that may never happen or recur. I find it best to be honest and patient with yourself.
Don't say why me!
CIDP is a treatable condition.
Amor Fātī
Despite receiving a rare diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy I consider myself very fortunate. Fortunate for meaningful nerve repair to occur eventually and be confirmed by medical specialists. Gradual nerve self-repair is not a prognosis any doctor would give for CIDP. This is not expected with a condition all neurologists define as chronic. Characterised by a relapsing and remitting ambulatory function.
I don't seek sympathy.
In my experience empathy for rare hidden conditions is improbable outside of immediate family. I am aware neurological medical research is crucial to find new targeted treatments and cures.
Awareness in the wider community of GBS and CIDP would be a boost to foster more research. All people, including you and l, don't get a choice to avoid potential future autoimmune or neurological disorders.
These disorders cannot be prevented by lifestyle choices.
It is our choice how we choose to respond and live our lives. If nothing else, my CIDP journey offers food for thought.
There is a Latin phrase. Amor fātī. Accept one's fate, find the elusive positives and move on.
Amor Fati
Wayne
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