CIDP RECOVERY IMPAIRED MOBILITY TO ABLE-BODIED?

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.

8272 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.

Hi, my name is Wayne. 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 was 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 turned 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 slight 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 and the water diluted with whisky and two more sessions. An incredulous recommendation in my opinion. I did buy a bottle of Jim Beam. I already owned a foot spa. I used it once. I felt no different after the one acupuncture session. I drank the bulk of the whisky over several dinners. An entertaining story.

I returned to my home unconvinced acupuncture made any difference. I declined the two further expensive sessions.

In an Immobile State and Past Trauma

I was struggling to lift my feet for no apparent reason. All my fingers tingled and all toes felt numb. Accessing my automatic geared 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. 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 on the floor. I could see looks of astonishment in those around me. I felt the same. Suddenly experiencing 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 in 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.

Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy both have the same symptoms as a neurologist will observe on patient presentation.

Unknown Cause

CIDP origins are idiopathic, (unknown). Although, one United States research paper available online documented a small cluster of GBS/CIDP cases among workers in a piggery attributed to Campylobacter Jejuni sometimes found in slaughtered pig, sheep or chicken. I worked in the food industry for years with daily exposure to dried blood from thousands of freshly slaughtered sheep. The provided cotton hood head/face and body protective clothing ineffective as a 100% barrier against dried blood contact. Some factory floor assigned tasks were working with hand held air guns and filling large recycle type bins with hard poly plastic meat hooks. Hooks were manually pulled off of the overhead automated chain line by hand about every eight seconds or so. A was hook removed one at a time at their terminus. Bins contain hundreds of hooks before they are full. Some workers joked these repetitive unofficial job descriptions were employment as a Hooker and a Blower. A colourful work description.

Medical publications such as National Library of Medicine, Journal of Neuroimmunology etc, cite up to 40% of those diagnosed with GBS/CIDP showed a viral infection with Campylobacter in the few weeks prior to symptoms appearing as the result of the onset of nerve demyelination. Nerve damage 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 good to be naive and not know what might lay ahead. 

I began intravenous immunoglobulin (IVIG) infusion of Privigen that night, Friday. 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 had a late finish of 3 am. The end of the loading dose of IVIG treatment.

Symptoms, Not Good

An adjacent patient received a regular family member visitor to the ward and this female visitor during one of her visits collapsed creating an emergency situation. Nursing staff immediately called for doctors and issued a loud PA announcement. Doctors in their white coats came out of nowhere huddling around the collapsed visitor now unresponsive. She was laid down on the hospital bed previously occupied by the brother she was there to visit. Rather fail 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 cause of 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 taking an in 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 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 staff 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 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.

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. 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 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 mild tightness felt around the torso. What is happening? How bad can things get? Torso tightness later fluctuated between severe and moderate and was felt daily over the initial few years. No airway ventilation was ever required. Facial movements were unaffected.

No further Deterioration

Doctors asked if I could wiggle my toes up and down. I did to our surprise. 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. One 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 arm 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 strength. Although I found it impossible to lift my feet more than 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 full capacity. I was stable and under supervision. I was later told the first course of IVIG probably stalled the progression of CIDP. I understood progression meant reliance on a ventilator 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 rockstar 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. Doctor's 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 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 or more at the earliest. 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 very 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 heads 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 whereas previously described, the woman collapsing with a Hipo 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 most of my hospital stay my only regular visitor was a weekly visit from a volunteer inter-church counsellor. These visits were really helpful and appreciated. A family member paid me a day's 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. It can't be understated how great it felt to feel the fresh air and warm sun on your face after one month inside. I myself am wondering if this is permanent now? A drastic turn of life events unfolding right before my eyes. Most likely becoming wheelchair dependent. 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.

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\hand dexterity caused repeated failed attempts. 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.

Inpatient Rehabilitation

I spent five weeks in this major Melbourne hospital 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 suburb 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. For a period of almost two weeks. 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 never told the driver 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 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 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 head and body. 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. Rolled past the unattended nursing station and turned back toward the wards.

Unknown Outlook on Recovery 

Towards the end of my stay 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 and poor expectations. Self-balance was still a major issue.

Once every four weeks I received an 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 rehab. Now authorised with green tape I asked a visiting neurologist if this is true. Me 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 using a 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 at 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 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.

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 and feed the cat and dog in the backyard in the initial four months. There was great difficulty twisting household taps and dressing daily. I enrolled in physiotherapy and 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.

Walking was 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 Infusions

My local hospital provided monthly IVIG Privigen infusions in their Oncology centre. An 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 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 one hand and open the lid of a sandwich pack. I remembered my repeated failed frustrating attempts just a few months previously.

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.

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.

Hoping for some Relief &

Long Term Improvement

Normal touch sensation had long since returned. For many months everything was like coarse sandpaper to the touch. Even to pat the dog and cat. Initially the first twelve months of abnormal unpleasant foot sensations of crawling ants on skin and sometimes legs to doubt one's sanity. I did not develop hand tremors or leg cramps. These are symptoms some people diagnosed with CIDP report.

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 virtual reality cinema. VR offered a very real comforting feeling of freedom, experiences and escape from over twelve months of CIDP immobility. I also continued developing my own road trips website. Self-taught through trial and error. I navigated isolation and restriction challenges of COVID-19 without infection.

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. I signed up.

I used the service as an outlet 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.

CIDP Long Term Five Years

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. 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 not wanting prescription addiction. This was not out of a sense of a noble thing to do. I know high dosages of 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 and 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 flaring nerve pain at bay. 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 thoughts of 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 flaring of nerve pain. I don't have the answers. Nerve pain abated somewhat after four years. Perhaps down to a two or three on the pain threshold? No separate health issues.

Three 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. Effectively, early labour force retirement.

For example, a long three years from hospitalisation for a first attempt at extended car driving. Also, the ability to be able to hand wash a car uninterrupted by multiple rest breaks for fatigued legs and arms. Mow a small lawn without resting legs. Walking slowly for more than thirty minutes.

I've always enjoyed driving. Good to not feel significant under the ribcage wincing from torso tightness, (abdominal nerves inflammation?) over every minor highway jolt and bump. Three plus years to get to near normality. Will this be maintained! Or will I experience a relapse?

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 own vehicle. This with a six-speed manual transmission in a Mustang GT. 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 verbal abuse from an outside dining café patron for parking in a disability spot. 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 through most of your body remains unseen to all.

All these personal milestones and more were not guaranteed. An estimate on time taken to gain improvements, if any, cannot be obtained from the medical profession. It's the uncertainty nature of CIDP.

My three year disability Parking Permit renewal was twice refused and not renewed. Even with General Practitioner doctor input and submission. Probably because of the eligibility criteria assessment to use walking aids within a one hundred metre distance. Leg fatigue was still a major issue even though aids were no longer used. My believeth was that the Permit would be deemed unnecessary in twelve months' time anyway.

Four Years Living With CIDP

After four years of incremental improvement and at last, reducing nerve discomfort. Improvement also shown around the torso. In my own mind, a relapse and a wheelchair scenario was not expected again. I experienced throughout this time the ever present, unpleasant feelings of large, rounded stones/balls under both feet. Symptoms associated with CIDP neuropathy.

CIDP impacts nerve myelin, nerve axons and causes inflammation of nerve roots. If nerves are too damaged, limited or no long term healing is possible for the unfortunate. Medical papers cite nerve regeneration is 1mm per day or about one inch per month with no active disease.

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. It had previously been assumed a plateau was attained. This was incorrect. Small improvements greater than fifty months from diagnosis were still achievable. These improvements were not really felt in a practical sense. Nerve conduction was outside of acceptable parameters. Shows further improvement is possible even after fifty months.

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.

A four year MRI scan follow up was completed of the spine and cranial cavity. Dye injected. Not less than a one hour process. An investigation into chronic torso tightness since the initial CIDP diagnosis four years previously. A scan for demyelinating disease and lesions of the central nervous system. The conclusion was of no demyelination or lesions identified of the central nervous system. Normal scan result. No nerve entrapment or Multiple Sclerosis (MS) pathology. No additional neurological problems.

CIDP is a peripheral nervous system condition. There is no spinal or brain involvement in CIDP. Now I am experiencing almost pre-CIDP ambulatory and strength function, except lower limbs. Walking a moderate distance is ok. Sixty minutes. Normal pace. No walking aids are required. This is a significant bonus.

Five Years Living With CIDP

On approaching five years of CIDP. 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. However, a routine blood test is taken in a medical clinic every few months to ascertain nothing abnormal.

IVIG infusion is still ongoing and is now changed to Privigen infusion of 40g completed on one day, six weekly and up to a four hour duration. Instead of over two days every six weeks. If all goes well after an extended amount of time, infusion will be pushed out to eight weeks duration. The purpose is to halve hospital attendance to one day and to avoid possible or probable multiple failed attempts of catheter (I.V. needle) insertion into a vein due to poor venous access. The merits of self-administered subcutaneous immunoglobulin (SCIg) infusion may be an option for future consideration if infusion attempts are increasingly problematic.

Time to underscore CIDP.

Obviously, no progression or relapse.

Discontinuation of IVIG is unlikely?

In my opinion, it is a medical specialist decision!

Beyond Five Years

I regard myself as a driving enthusiast. I enjoy travelling within Australia. During May 2024 I completed a nine day tour as a passenger in a Toyota Landcruiser to the famous outback town of Birdsville in Outback Queensland. A return distance of 3,400 km Adelaide to Adelaide, South Australia. I drove myself 500 km to Adelaide to begin the tour. Return to home base was driven in one day.

On no part of the remote trip special allowances were made because of ongoing CIDP symptoms. Nor was personal enjoyment diminished considering much travel was on unsealed and sometimes rough roads. Birdsville has a population hovering around one hundred. The one and only hotel is arguably the most famous Outback hotel in all of Australia. I grabbed a cold beer in a large glass and sat outside under the hotel's iron sheet awning and stood on the iconic veranda. A sturdy pew timber bench and a backrest provided seating. In next to no time bush flies were bothersome in the rising afternoon temperature requiring a return to the airconditioned hotel interior. We visited the Birdsville Bakery for one of their renowned curried camel pies. I was confident of holding a mug of hot coffee in one hand. Unlike shortly after my CIDP diagnosis. We even scrambled up a red desert sand dune thirty km out of town. The legendry dune called, 'Big Red'. On the edge of the formidable Simpson Desert. The return drive to Adelaide was down the famous Birdsville Track. We found overnight lodgings at the Mungerannie Hotel halfway down the track and found a new friend in Sammy, the friendly kelpie dog playing an amusing game of fetch the stick for us tourists. Sammy jumping in mid air, his mouth catching a thrown stick. 

Our group of three and everyone we met on the outback road trip were fantastic characters.

All getting along with each other. All my tour optional excursions and activities were completed as normal. Proof of CIDP symptoms receding to the back seat for once. Pun intended.

Although significant improvement takes a very long time and gains are uncertain. With the passage of time CIDP symptoms may eventually fade and not permanently worsen.

I hope this is encouragement to those newly diagnosed.

Returning to living near a normal life is possible with Chronic Inflammatory Demyelination Polyneuropathy.

Living With CIDP & IVIG

It is well past the five year initial diagnosis of CIDP and there is still incremental improvement felt. Tingling feet, hands and torso nerves are always still present. Infusion is every eight weeks.

Living long term with CIDP and to divert attention away from CIDP symptoms, there is merit in listening to music. This provides home based enjoyment. Social interaction is important for health as is to enjoy any family time. Attending live events helps ward off feelings of isolation. Join a light physical activity group. For example, Tai Chi? Join a neuropathy focus group. If only to listen to others and chat. People familiar with CIDP give perspective and may offer valuable first-hand information on rare conditions such as CIDP or GBS.

I toyed with the idea of learning guitar off of Youtube. An activity enjoyed sitting and having fun at home. I brought a couple of budget guitars. One electric and one acoustic. Although my fingers have a permanent feeling of paraesthesia. Symmetrical in both feet and hands. I self-taught myself a few basic cords and scales knowing the project is a long term work in progress. I learned to play left-handed. Feels more natural to me. I could play little more than endless simplified riffs of Smoke On The Water. My playing ability needed to match my ambition. Still, why not have a go! I did not sing. My singing voice is worse than my playing. The sounds of poorly tuned amplified musical notes breaking the otherwise silence of a quiet house. 

Questioning the neighbours for disturbing their peace. The reply, no barely noticeable. All okay.

My IVIG infusion dosage has never been greater than 40g. The first few years were infused four weekly then six weekly, followed by every eight weeks. I have not experienced any significant decreased mobility between IVIG infusions as many do. I have never experienced an adverse reaction to the infusion flow rate of IVIG. Reaction after-effects may include headaches and nausea.

In my opinion it is best to seek, evaluate and trust answers from specialists and hope for the best.

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.

Amor Fati

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 concerning Chronic Inflammatory Demyelinating Polyneuropathy.

All things considered; quality of life has returned.

Being able to enjoy once again a one-handed cup of coffee after Tai Chi formwork with classmates. The freedom of walking unassisted in the outdoor fresh air under a warm sun. Driving the countryside and Great Ocean Road again. The simple things.

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.

Despite all the aforementioned I still consider myself fortunate to feel and see real progress and not have periods of relapse. I don't seek sympathy. In my experience empathy for rare hidden conditions is improbable outside of immediate family.

CIDP awareness would be a start. We don't get a choice of 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.

There is a Latin phrase. Amor Fati accept one's fate, find the elusive positives and move on.

Amor Fati

Wayne

PREV CIDP NEXT

HOMEPAGE