10-1-02This is part of the Brejcha Personal and Disability Resource Site, and after reading this page you can Click here for a Menu . But for now, Welcome to my:
10-1-02
Multiple Sclerosis: mul'tiple sclero'sis n. A chronic degenerative disease marked by patchy destruction of the myelin that surrounds and insulates nerve fibers and causes mild to severe neural and muscular impairments.
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So just what does the above mean? That's probably easier to describe on a personal basis -- which is why I am including my own basic medical history here. But it is very important to remember that the only thing consistent and predictable about M.S. is that it is not consistent or predictable. My case is only one scenario of how the clinical progress of M.S. may go. That's the operative word: may.
It is not unheard of for symptoms to develop, and then stop progressing. It is also crucial to factor in the effect of one's own perceptions, expectations and reactions. I know that my own M.S. was progressing very rapidly and frighteningly -- until I finally kicked myself in the butt to stop feeling sorry for myself and I developed the mottos on my home page. Then a funny thing happened: the M.S. stopped its rapid progress! I have had further deterioration (partly due to a prolonged surgical hospitalization), but nothing like what I would have had. I would have been in a nursing home by now given my earlier rate of progression (that is what my doctor at the time was anticipating -- and me, too).
But with the above cautions in mind, here is my own medical history - presented just to show that even with what many would consider fairly advanced disabilities, it's very possible to have an interesting and productive life. Of course my 'fairly advanced disabilities' comment is a relative one based on someone without disabilities -- someone blind or a quadriplegic who is paralyzed from the neck down and dependent on attendant care would be well entitled to read that and laugh (though for two years now, I am also dependant on attendant care). But I still consider myself very fortunate. Because despite everything, I have a full-time job, a freelance writing sideline, and I found love and recently celebrated my second wedding anniversary.
PRESENT CLINICAL STATUS
Symptoms: Paraplegic with no voluntary movement below the waist. Tactile sensitivity 80% intact below waist (60% at feet), increasing to 100% above the waist, except for arms and hands which decrease from 100% at shoulder to 60% at the fingertip. Rapidly fatigued. Impaired fine coordination with palm and finger parasthesias (numbed areas with reduced sensation) and impaired positional sense (though fine coordination and sensitivity are far better than the first years). Impotent and bladder incontinent, but with bladder sensation (I have used external Texas catheters and a leg bag since 1984 [I call the catheters my Catholic condoms because they look a bit like adhesive-lined condoms that end in a tube that would improve aim :-) ]). Reduced bladder capacity (200cc) with urgency and frequency. Bowel program every other day maintains bowel continence 99.9% of the time. Easily fatigued with some reduction in arm strength. Poor balance with sensitive inner ear. Highly temperature sensitive with heat causing a substantial reduction in strength and coordination.
Medications: Lioresal/Baclofen (an anti-spasmodic) 20 m.g. Q.I.D. (four times daily), 1000 m.g. Glucophage twice daily for diabetis, and a bowel regimen every other day with Fleet glycerine laxative applicators.
Self-care: Use of standing frame when to aid circulation, prevent tendon contraction and bone density loss, and to reduce edema, and use of exercise machine designed for wheelchair users periodically (but not enough). Exercise is essential.
MEDICAL HISTORY
1980 ?? (end of 1980) M.S. exacerbation
First major exacerbation. Optic neuritis, neuralgia and diplopia (inflammation and pain in optic nerves and eyes and some doubling of vision), inner ear problems (balance problems), major fine coordination deficits and parasthesias in hands. Blurred vision in left (?) eye; center of visual field. Gait disturbance and spasticity, some foot drop on left. 10 day ACTH (steroidal medication) gel I.M. (intra-muscular) self-injection. Started on Baclofen for spasticity (10 m.g. T.I.D. [three times a day]). Tests done around same time include: fluorescein angiogram, evoked audio and visual potential, full back myelogram with spinal fluid sample (all tests supporting tentative M.S. diagnosis).
Admission ?? (end of '81) M.S. exacerbation.
Admitted with nausea, vomiting and vertigo, falling, left leg weakness and increased foot drop. Continued fine coordination deficits and parasthesias. 10 days of ACTH I.V. (intra-venous) injection and physical therapy. Substantially improved on discharge.
Admission 10-28-83, discharge 11-7-83. M.S. Exacerbation.
Admitted with extreme difficulty walking, spasticity and extreme leg weakness and foot drop. Continued fine coordination deficits and parasthesias. Baclofen increased to 20 m.g. T.I.D. 10 day ACTH I.V. Marked improvement with steroids and physical therapy. Discharged ambulating with cane.
?? (early '84)
MAFO (a molded plastic ankle-foot brace) for left prescribed due to increasing foot drop problems, and switched to quad cane. Had bad episode of diplopia and had to wear eye patch for a week due to double vision problems (no further problems of this sort until milder visual disturbances in September 1996 which lasted approximately three weeks). Bladder control worsened and began using external catheter and leg bag.
Admission 5-10-84, discharge 5-20-84. M.S. Exacerbation.
Admitted, unable to walk properly with cane due to right leg weakness and increasing spasticity added to further problems with left leg. Continued fine coordination deficits and parasthesias. 10 day ACTH I.V. and physical therapy. Discharged with bilateral MAFO's to improve walking, and on Ditropan bladder-relaxing meds (latter discontinued due to negative interaction with Baclofen). Ambulating with Loftstrand crutches (metal crutches with handle and cup that supports upper arm).
Admission 4-8-85, discharge 4-18-85. M.S. Exacerbation.
Admitted, unable to walk properly with Loftstrand crutches due to exacerbation. Severe leg weakness and spasticity. Continued fine coordination deficits and parasthesias. Baclofen increased to 20 m.g. Q.I.D. (four times a day) Ten day I.V. ACTH and physical therapy. No noticeable improvement other than reduction in spasticity due to increased Baclofen. Discharged on oral Prednisone in wheelchair. No improvement on prednisone, which was discontinued after four weeks due to lowered resistance to opportunistic infections. Able to stand to transfer and walk a few steps with support.
SPU procedure 6-26-85
Pilonidal cyst excision.
Exacerbation, mid-1986
Minor exacerbation, but no longer able to stand to transfer or walk with support. Forced to start using power wheelchair when out, due to rapid fatigue level.
1986 to 1996
Occasional minor but cumulative drops in functioning, with overall reduction in strength and balance. Presently dependent on power wheelchair when out due to rapid fatigue, but use a manual wheelchair at home. Still able to live independently and continue working and commuting independently. But the previously rapid progression of symptoms slowed drastically in late '86 as I re-oriented my thinking and started living my home-page mottos. If not - given the earlier rate of progression - I would have been in a nursing home by now.
December 1996
Severe bladder infection, hospitalized for seven days on I.V. antibiotics. This was scary as it turned me briefly from paraplegic to quadriplegic, and resulted in a drop in strength and endurance that lasted for months. Lesson: it is vital to work on keeping in shape!
Admission, August 1998
Admitted for six days for intravenous antibiotics due to cellulitis infection in my right arm. My own fault, so heed my warning. The pads on my wheelchair arms (both chairs, both arms) were worn away, and the cracked plastic on the right arm rest would pinch me when getting dressed -- actually drawing blood once in a while. Between finances and procrastination I did not replace them (I have now!), and naturally rolling through the emergency room and intensive care units at work with an open wound was asking for trouble (germ A to germ B: "Ooohh! Dinner!"). The infection in my arm kicked in a fever, and that kicked my M.S. into high gear and turned me to quad status again and I had to be brought in by ambulance (it hit real fast). I was better on discharge, but my functional level dropped again and I had to revise my bathroom.
Admission, November 1998
Admitted for eight days for intravenous I.V. antibiotics due to renewed infection - centered in a perirectal abcess which was surgically drained. Gut feeling: this was a left-over from the first infection which settled in a stressed part of my body and returned with Darwinian vengeance since I feel the discharge and cessation of antibiotics the first time were premature. I had not felt well for weeks after discharge but I had attributed it to the effect of the infection on my M.S.. I was discharged to home-care with a positive air-flow mattress to promote healing, along with daily wound packing and dressing changes. I.V. antibiotics were continued with a small pump and supplemented with oral antibiotics. Lesson learned: pay attention to your body and know your condition, and if things don't seem right, get checked out.
Admission 9-20-99 to 9-24-99
Admission to Chester County Hospital for urinary tract infection. Started on dual intravenous antibiotics (Gentomycin and Cithromax) indicated by gram negative infection cultured in urine. After no response for three days, switched to Zithromax, specific to gram negative and atypical infections. Responded immediately. After 2nd dose, prior antibiotics discontinued due to liver function and white count effects. Discharged to home with midline to continue home infusion of Zithromax for ten days. Temperatures stable and normal but small sacral decubitus noted and out-patient wound care started.
Admissions and recovery 3-9-00 to 7-31-00
Admitted to Paoli hospital due to mismanaged wound care which resulted in a 2cm x 1/4 cm sore progressing to a 3 1/2 cm to 1/2 cm one due to improper and inadequate care compounded by repeated debrieding. The sore was infected and extensive debrieding of necrotic tissue was needed combined with I.V. antibiotics. Transfer to Manor Care Nursing home for stabilization was followed by re-admission to Paoli for musculocutaneous flap surgery requiring 90 staples and 30 sutures. After stabilizing, transferr back toi Manor Care was followed by transfer to Bryn Mawr Rehab after staples and sutures were gradually removed. Discharge to home on July 9th followed by home care nursing until return to work 7-31-00. Total independence was lost however and daily attendant care instituted to keep working and maintaining bowel care.
To read an expanded re-print of an article about the prior that I wrote for Plastic and Reconstructive Surgery (October, 2001), click here on Treatment Precautions for Paraplegic and Quadriplegic Patients with Sacral Decububitus Ulcers (Clinical commentary to educate surgeons about the different treatment needs of patients with disabilities. Due to wound care mismanagement I spent five months in a hospital at a cost to me of $12,000. There was no no need for that!)
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