Written July 18, 2010 - By: Cherie C. Binns RN BS MSCN

I have had MS since the early 1970s and was formally diagnosed in 1994.   It was not, however, until 2001 when I was no longer able to walk without assistance and was legally blind, that any treatment for the disease was even suggested to me.   Since that time, I have been treated with Interferons, steroids, IVIg (Intravenous Immunoglobulin) and Cytoxan.  Copaxone was never used because I have allergies to certain dyes and preservatives and it was felt this drug, as entirely synthetic, might not be safe for me to take for that reason.   My neurologist will not use Mitoxantrone (Novantrone) or Tysabri.

When a chronic urinary tract infection would not resolve with more than a year of antibiotic therapy, I was removed from my interferon.   The thinking was that the interferon was suppressing the immune system so that I could not effectively fight the infection.   This decision came about with the consultation of an immunologist working with my neuro and primary care doctor.  Within a month of going off Rebif and being placed on IVIg weekly, the urine cultures came back clear and infection has only reoccurred once in the 16 months since then.

In July 2009, I was placed on Cytoxan 1GM IV each week hoping to lower my white blood cell count to between 2.0 and 2.5.  Normal levels are between 4.0 and 10.0.   In many persons with MS, it has been observed that symptoms tend to be more prevalent and more difficult to manage with higher white blood cell counts.   The body seems to “attack” itself more when these “protective” blood cells are at peak levels as if fighting infection.

After several months of adjusting the  dose of Cytoxan up and down and shifting frequency of dosing from weekly to monthly, we hit upon a regimen that seems to work for me and keeps my white counts in the 2.0-2.5 range all the time.   With that, MS symptoms are more manageable than when I am at higher levels of white blood cell counts.    For the past 3 months, I have been on 1500 mg IV every three weeks.

Unlike steroids, Cytoxan does not put a patient at risk for osteoporosis, diabetes, cataracts, obesity or heart disease.  The biggest risk is hemorrhagic bladder but predominantly in patients who have had issues with blood in the urine previously which I have not.   One of the regular screenings that I must do (every 6 weeks) is a urinalysis to check for blood cells.   Also an annual urine Cytology is done to see if there are abnormal cells in the urine which could be indicative of a bladder cancer (a very rare complication).

Cytoxan is a chemotherapy drug used alone or in combination with other drugs to treat certain cancers.   It suppresses the immune system so that it does not attack itself and it also suppresses blood cell production so people on Cytoxan long term will likely experience mild anemia and lower than normal platelet (clotting factor) levels.   With close monitoring and adjusting the dose and frequency accordingly, these are generally not difficult things to manage and do not significantly impact lifestyle or quality of life.

What have been the benefits of Cytoxan for me?

• Freedom from chronic urinary tract infections
• Lowered Blood pressure to the point where I can quit BP meds I have been on for years.
• Blood sugars within normal range and no need for special diet or medication to keep that normalized.
• Heart rhythms have normalized.
• I no longer need medication to manage spasticity or pain or fatigue.
• Except for a couple days of the month, I generally feel well enough to do most anything I wish to do.
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How does Cytoxan dosing feel?

• I receive an anti-nausea drug prior to the infusion of Cytoxan so I feel a bit sleepy and listless the day of infusion and sometimes have mild nausea and decreased appetite for a day or two.
• My vision blurs for a couple of days after dosing but not enough to be dangerous for driving and not enough to prevent necessary reading or use of the computer.
• I actually sleep better for a couple of days after each dose than the rest of the month and sleep is often an issue for me.
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What routine screening is needed?

• Complete Blood Count with Differential and Platelet count (CBC) the day before each dose.   The dose is held or adjusted if the white blood cell count is below 2.0 or above 3.0  but that adjustment  has not been needed now for four months as I am so well controlled on this dosing.
• Liver function , kidney function and basic metabolic panel every 6-8 weeks along with a urinalysis.
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What other precautions should be taken?

I can honestly say, after more than a year on solely this medication for management of my MS, that the side effects are less than those on interferons and it is significantly better tolerated than steroids.  Brain stem lesions (responsible for heart rate and blood pressure and blood sugar shifts) are quieted so I need less medication to manage the symptoms prompted by lesions in this area.  I have had significant thinning of my hair and use hats and wigs now but it is worth it to have the MS this well controlled.   And I have been assured by several neurologists and my internist and hematologist/oncologist that this medication has no known lifetime maximum dosing and I could safely be on it for years.

For more information on this medication go to http://www.drugs.com/pdr/cytoxan.html

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This is the second in a series of reviews of educational offerings at the CMSC annual meeting in San Antonio June 2010

The 24^th Annual Consortium of Multiple Sclerosis Centers +Meeting

June 2-5, 2010 at the Grand Hyatt in San Antonio , Texas, USA

As reported by Cherie C. Binns RN BS MSCN

Note:   The interpretation of these sessions is one person’s interpretation of the materials presented and opinions expressed and may not represent fully the  intended message of the presenters.

For Health Care Professionals who wish a schedule, abstracts and presentation slides of the Meeting’s Offerings, go to http://annualmeeting.mscare.org

Immunosuppression and Immune Surveillance in Multiple Sclerosis

Presented by the North American Center for Continuing Medical Education, LLC (NACCME) and supported by an educational grant from EMD Serono, Inc.

Faculty:

Clyde Markowitz, MD

Director of the MS Center at University of Pennsylvania

Associate Professor of Neurology at the University of Pennsylvania School of Medicine

Philadelphia, Pennsylvania

Douglas R Jeffrey, MD, PhD

Associate Professor Neurology and Director of MS

Wake Forest University School of Medicine

Winston-Salem, North Carolina

This segment looked at immunomodulation and immunosuppression as neuroprotective strategies and also identified current and emerging drug therapies which have proven or potential effect on preservation of tissue in the central nervous system.

Immunomodulators were defined as  substances “that alter the immune response by augmenting or reducing the ability of the immune system to produce antibodies or sensitized cells that recognize and react with the antigen that initiated their production.”

Immunosuppression is defined as “The administration of agents that significantly interfere with the ability of the immune system to respond to antigenic stimulation by inhibiting cellular and humoral ability.”

Current Disease Modifying Therapies (DMTs)  that are FDA approved for Multiple Sclerosis (MS)

• IFN beta 1a (Avonex) weekly IM 6M units
• IFN beta 1b (Betaseron ,Evista) every other day SQ 8M units
• IFN beta 1a (Rebif) 3x/week SQ 12M units
• Glatirimer Acetate (GA or Copaxone) daily SQ 20 mg
• Mitoxantrone (Novantrone) IV every three months 12mg/m2 (3 year life time dosing)
• Natalizumab (Tysabri) IV monthly
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Presumed (MOA) Method of Action of IFN beta meds:

• Inhibition of T cells
• Inhibition of inflammatory Th1 cytokines
• Activation of regulatory T-cells  (Th2) and cytokines (IL-4 and IL-10)
• Stabilization of the BBB (Blood brain barrier)
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Presumed MOA if Glatirimer Acetate

• Induction of myelin specific “suppressor cells”
• Inhibition of proliferation of inflammatory Cytokine  MBO T cell lines
• May provide neurotropic support to injured nerve tissue
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Benefits to current MS therapies

• Reduction in # and severity of relapses
• Delay in disease progression by clinical measures
• Slow cognitive decline
• Reduce enhancing MRI lesions and brain atrophy
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Currently patients must have failed IFN beta therapies and GA in order to reasonably be considered to begin therapy with Mitoxantrone or Natalizumab according to FDA guidelines.

***New therapies for potential use in the next 6 months to three years:***

• Injectable Daclizamab SQ every 2-4 weeks is a humanized mono-clonal antibody that decreases the proliferation of activated T-Cells and expands natural killer cells (NKC),   This drug was approved as an anti-rejection drug in the kidney transplant arena in 1997.   Now going into Phase III human trials in MS.
• IV Rituximab (Rituxan)  is another human mono-clonal antibody  that was approved in 1997 for Non-Hodgkin’s Lymphoma and in 2006 for Rheumatoid Arthritis.  It has been perceived as fairly safe with no PML history and greater efficacy in the under 50 age group.   Not effective in trials for PPMS (Primary Progressive Multiple Sclerosis).  Completed Phase III for PPMS and will revisit for RRMS and SPMS patient population.

• Alemtuzumab is another IV human monoclonal antibody that reduces circulating T cells and B cells as well as monocytes and natural killer cells.  It was approved in 2001 for the treatment of chronic lymphocytic leukemia.  It is administered IV over 5 days in the hospital setting then provides immunosuppression for one year.   The problem with this drug is that B-Cells begin to recover and reproduce within 3 months whereas T Cells take up to 16 months to normalize.   This drug has shown a reduction in enhancing lesions on MRI as well as a slowing of disability in progression on the EDSS scale.   Adverse effects include infusion reactions (98%) , thyroid disorders +/- 22%, and infection rates in the range of 66%.   Two Phase III trials are currently underway.

• Fingolimod (FTY-720) will be reviewed by the FDA on June 10, 2010 and is potentially the first oral therapy to be available.   It is dosed by mouth daily  and only seems to affect lymphocytes and not other types of white blood cells.   Severe asthmatics are excluded from taking this medication and those with chronic herpes outbreaks may not be able to take this as there were two deaths in trials from herpes.  Liver enzymes are also expected to elevate and heart rate drops with BP increasing in many subjects.

• Cladribine, another oral drug that has two weeks of dosing annually, has completed trials and been submitted to the FDA for approval.   It appears this may need further testing with additional markers being assessed as it so deeply immunosuppresses that it takes an average of a year or more for normalization.  There has been high infection rates (40-60%) in the study group, 11% of which were herpes infections.   Two deaths occurred in the study group…one from cardiac arrest and one from cancer.  Some studies are showing an alteration in the immune system for periods of 3-5 years with no remediation.

• Laquinomod is a daily oral drug that alters T cell ratios and reduces new lesions by 44% on MRI but so far has shown no impact on the frequency of relapses.  Three cancers and some blood dyscrasias have been observed in trial subjects with this drug.

• Teriflunomide , another daily oral agent, has shown relapse reduction by 62% in phase II trials.   Adverse effects include hair loss, upper respiratory infections and nausea.  It is contraindicated in the childbearing population as it has been shown to have tetrogenic effects up to two years after final dose of the drug so has potential for high risk of fetal abnormalities and miscarriage.

• Oral Fumeric Esters for daily oral administration have been in use for psoriasis in Germany for several years.  In Phase II trials there is an overall reduction in T2 and gad enhancing lesions as well as relapses.   Most side effects with this drug are in the GI arena.

The conclusion is that better therapies are on the way but none are without risk.   Current approved therapies have a better safety profile than any of the newer drugs currently seeking to come to market.   It is voiced that these new drugs will likely end up being 2^nd, 3^rd or 4^th line of defense medications and not used with newly diagnosed patients but only those who have tried and failed meds currently available.   No one agent will be affective for all patients so both patients and providers must be flexible when identifying and choosing therapeutic courses.

With the newer drugs questions of what to do when there is clinical failure arise.   Once you have tried many of these, there seems to be very little place the clinical team can go from the drug with the exception of Fingolimod which has such a short period of action that it can be stopped, washed out, and another agent tried.  All of the new not yet approved agents come with a laundry list of adverse effects such as opportunistic infections, cancers, blood dyscrasias , liver disorders, thyroid disease, that close monitoring is indicated adding to the cost/benefit ration of the therapy.

“Do your Homework!”

• There is literature on all of the newer agents
• Some have a known track record of adverse events
• In this new era of drug therapy , we may see adverse events we have not yet encountered.
• Don’t prescribe (or request) a new agent until you have thoroughly done your homework on benefit and risk associated with it.

More updates  to be provided in the coming days

This is the first in a series of renderings of educational offerings at the 24^th annual CMSC meeting in San Antonio in June 2010

The 24^th Annual Consortium of Multiple Sclerosis Centers +Meeting

June 2-5, 2010 at the Grand Hyatt in San Antonio , Texas, USA

As reported by Cherie C. Binns RN BS MSCN

Note: The interpretation of these sessions is one person’s interpretation of the materials presented and opinions expressed and may not represent fully the intended message of the presenters.

For Health Care Professionals who wish a schedule, abstracts and presentation slides of the Meeting’s Offerings, go to http://annualmeeting.mscare.org

Cognition and Neuro-Protection in Early Multiple Sclerosis:   Emerging Insights

This is a continuing education offering sponsored by DIME and a grant from Bayer Healthcare Pharmaceuticals

Chair:   Maria  Pia Amato, MD

Associate Professor of Neurological and Psychiatric Sciences

University of Florence, Italy

Faculty:  George H. Kraft, MD, MS

Director, Western Multiple Sclerosis Clinical Center, University of Washington Medical Center

Seattle, Washington

Dawn Langdon, PhD

Neuropsychologist from the University of London, Egham, Surry, United Kingdom

Dr. Kraft “Since MS takes a toll on Neurons , it cannot but help but take a toll on Cognition.” Neuroplasticity is far more prevalent in MS than in Stroke or Traumatic Brain injury (TBI) since events take place over years instead of a matter of seconds or minutes.  Therefore the brain has a unique chance to repair itself and develop alternate pathways of information.  We do not know if current Disease Modifying Therapies (DMTs) are responsible for neuroprotection and neuroplasticity or if the brain is uniquely engineered to repair itself after an assault.

2009 ECTRIMS conference posters and abstracts suggested that interferons (IFN-b1a/b) and Copaxone (GA) appeared to have a neuroprotective effect since both categories of drug appeared to reduce damage to brain tissue on MRI (Magnetic Resonance Imaging) compared to patients on no medication or placebo.

Not yet released drugs nearing completion of testing also would indicate a neuroprotective benefit. These include Fingolimod, Laquinomod, and BG12.

When it comes to defining neuroprotection, researchers do not agree on a definition or action or outcome which would be either pathogenic or healing.

MRI and EDSS scoring are not effective means to determine neurodegeneration at this point.   More potentially useful markers might be brain atrophy, chronic black hole data and MRS (Magnetic Resonance Spectroscopy).  Cognitive impairment found through these methods in “Benign MS, Relapsing Remitting MS and Secondary Progressive MS is far more prevalent than we thought even till a year or two ago.  We have just not been looking at Atrophy particularly in the thalamus and third ventricle.   Both seem to correlate strongly with loss of cognitive function.  Third ventricle width and thalamic shrinkage correlate very strongly with cognitive decline especially in patients thought to have Benign MS.

It is Dr. Kraft’s stated opinion that all patients for whom there is not a definitive diagnosis of MS, CIS (Clinically Isolated Syndrome) or a diagnosis of Benign MS (BMS) require basic neuro-cognitive testing to assist in making a diagnosis and rationalizing treatment with DMT’s or cognitive rehabilitation to prevent further decline.

Memory repair drugs used in Alzheimer’s Disease such as Aricept looked very hopeful in restoring cognitive loss with PWMS (patients with MS) but off label prescribing and tracking have shown absolutely not data to suggest that these categories of drugs are beneficial to PWMS.   Trials with amphetamines are more promising.   Researchers have just not spent the time and energy to look at the role Fatigue (present in 90% of PWMS) in Cognitive Dysfunction except for a couple of very small clinical trials which have told us very little about any correlation.  Fatigue may actually play a role in limiting efficacy of cognitive rehabilitation therapies.

Neuroplasticity is the primary reason people can lose massive amounts of brain tissue and still function reasonably well.  Contrary to what we used to believe, nerves do repair themselves to a degree and when they are unable to do so, promote alternate pathways for information to travel.  To facilitate this repair and rerouting it is important to use it or lose function.   Repetitive activities, timed puzzles, problem solving all have been shown effective.   Deep sleep is necessary to repair and maintain nerve health and those who are able to get several hours of deep non REM sleep do better than those who sleep sporadically or only achieve REM and not Deep sleep.

Dr. Langdon: Cognitive impairment makes all MS symptoms harder to treat.   As a result it is imperative that neuro-psych testing is done as a baseline and also on a regular basis as part of an annual follow-up.   Patients tend to be less compliant with plans of care if cognition is altered (40-60% of all cases of PWMS).  Cueing and retraining or cognitive rehabilitation techniques improve the over all QoL (Quality of Life) in patients with MS as they are seemingly more able to place and keep in perspective  therapies they need to reduce symptoms and remain active in the work force and social environment.

Fatigue and Cognition were the two main factors in terminating employment in PWMS.   Along with this finding, it has been shown that once out of the work force, on average, most people with MS have drastically reduced their social Life which has a noted impact of caregivers, children and finances.

Driving ability is one area that has been tested repeatedly and shown to suffer from cognition problems.   The loss of ability to multi-task places the driver with MS at greater risk for injury or accident as response time to stimuli is reduced.   Add that to visual deficits (present in nearly half of PWMS) and mobility, social life and employment are all impacted.

http://www.stayingsmart.org.uk is a website for PWMS to test for and provide a wide range of rehabilitation techniques in cognitive decline.   There is a fast track site here for Health Care Professionals to assist in tailoring programs to the needs of their patients.

In looking at current literature available on the effectiveness of DMTs on preservation of cognition, GA (Copaxone) has not been able to demonstrate any cognitive preservation or improvement although the drug itself is thought to be neruo protective.   Betaseron (IFN-b1b) does have a couple of trials that show improvement on cognition.  Avonex (IFN b1a) showed significant effect on cognitive repair initially but the study was reviewed and adjusted and ultimately showed no statistical impact.  Rebif (IFN b1a) did show improvement in cognitive status in SPMS patients.

DIME, presenter of this educational offering, has a journal club and teleconferences available to those health care professionals who register at www.ejournalclub.org/club.aspx?id=15

They are an accredited provider of pharmacy, nursing and medical continuing education units.

Also, for Health Care professionals DIME has a literature research base at www.ms.ipointofcare.org

www.MultipleSclerosisProfessional.org is a regularly updated professional resource center for the MS Health Care Professional.

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Dealing with Paroxysmal Symptoms

By Cherie C. Binns RN BS MSCN

For most people with MS, “paroxysmal symptoms” is not a familiar term. However, even for some individuals who have never been diagnosed with MS, these neurological symptoms may send them to a doctor. Paroxysmal symptoms are characterized by sudden onset, brief duration and rapid disappearance. With patients exhibiting these events, brain wave studies do not identify them as seizures. These paroxysms may appear as brief twitching or spasms coming on suddenly and disappearing fully within seconds. They may or may not lead to an MS diagnosis.  They are not “MS Seizures”.

I had one patient who developed severe shaking leg spasms for about 20 seconds whenever we tried to reposition him. We were able to minimize this somewhat by letting him know we were about to move him, keeping hands in place for a few seconds before actually moving him, and not stopping if a spasm occurred until he was settled in the new position. This made it easier for him to relax and become comfortable.

Other examples of paroxysmal symptoms are:

• the sudden temperature shifts which are well known as “hot flashes,”
• a tic in the eyelid or lip,
• difficulty swallowing,
• problems finding the right word in the midst of a conversation or prepared speech,
• sudden emotional shifts that may be inappropriate in the moment  but which rapidly normalize,
• facial or tooth pain after eating or drinking something very hot or cold,
• shooting pains in an arm or leg, hand or foot that do not linger but may be so severe as to almost take your breath away
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Some of these symptoms have triggers such as:

In MS patients, paroxysmal symptoms may signal the onset of a relapse if they appear without warning and last for several days. This is especially true if accompanied by other continuous symptoms such as: fatigue, vision changes, bowel and bladder changes or any of the symptoms that usually indicate a relapse for the individual.   If you have not experienced any of these before and suddenly notice twitches or spasms, shooting pains or other events that last only seconds then are gone, this should be brought to the attention of your neurologist.

Treatment for these paroxysms depends on whether or not they interfere significantly with your normal routine and comfort or whether they are minor annoyances that can be taken in stride.  Your health care team will want to rule out other than MS causes for the symptoms before prescribing treatment.  Things that may be looked at are dental problems with tooth or facial pain or hormonal imbalances with “hot flashes,” or diabetes with foot or hand pain. There are very effective treatments available that can be used for a period of weeks or months to address and control the symptoms and then may be tapered and stopped.

Most of the effective medications for this type of symptom come from the anti-seizure drug group or the tricyclic anti-depressant drugs like Neuronitn, Keppra, Tegretol, Elavil or Deseryl . Many of these effective treatments can be used in far lower doses with fewer side effects, than the therapeutic dose for the condition for which they were initially used. Also, a benefit some people discover when taking them is an improvement in sleep quality.  This could be a side effect of the particular medication or the fact that paroxysmal symptoms are not interfering with sleep as they once did.   In fact, many people do not realize that they are having these symptoms while asleep until they discover that the quality of sleep improves with treatment.

If you are being treated for paroxysmal symptoms and they have seemingly stopped, it may be time for a talk with your physician about cutting the dose or frequency of therapy to see if they return or if they have quieted to the point where you may come off the medication gradually.

As with any of the symptoms experienced by people with MS, these can be very individualized and you may feel them a bit differently than others do.  They could affect your lifestyle or work habits more or less than others with the same condition.   For this reason, I have found that most persons  who treat these symptoms are quite willing to try treatments that can be tailored to the individual, to give maximum relief with minimal side effects or disruption of routine, while improving the overall quality of life.

Written for MSFOCUS magazine Spring 2010 issue

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By Cherie C. Binns RN BSA MSCN

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As we are entrenched in winter’s cold, many are thinking of taking a vacation to a warmer climate to break the chill.   I have been getting a number of questions on special needs travel and most revolve around scooters and power chairs.   For the purpose of this answer to those questions, I will address only those special problems faced by users of full sized power chairs or scooters.

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My scooter has been damaged to the point where it cannot be used on 5 separate flights.   The tiller has been broken, seat broken, batteries reconnected to opposite poles causing the batteries to be unchargable, the chassis has been cracked and the scooter has even come rolling down the baggage belt disassembled. The airlines have always footed the bill for the necessary repairs (scooter has been fully rebuilt three times and partially twice).

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Another problem that I have found is that a full sized scooter or electric chair does not fit into the cargo hold of most smaller commuter planes.    Since we live near an airport that only has a 7500 foot runway, the megajets cannot stop there so a lot of the smaller and older aircraft are used. I would advise you, if you are traveling with a motorized conveyance to check out cargo capacity.   Realize there is no "special place" for your scooter or chair and that it most likely will have luggage packed on and around it.   Remove accessories like baskets, mirrors, add on horns.   Fold your seat and tiller (if scooter) as tightly as possible into each other.   I will also often remove the arm rests and leave them at home since they are particularly prone to damage.

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I check the scooter, make these adjustments, release the drive train so it rolls smoothly, pocket the key (so the battery is not drained in flight or the baggage carriers are not tempted to engage in scooter races) and note on the checked tag any scratches (for the benefit of the airline and potential future claims).

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Unless I have a long layover (more than three hours) I do not gate check it but check it through to final destination.   There is less up and down and in and out and banging around involved.  I also call ahead and request a wheelchair at all stops and if we are tight on time for a connecting flight, I have the cabin staff call ahead to the connecting flight to be sure they personally come and offload the scooter and place it in the plane then someone is asked (airport transport) to get me to the connecting flight post haste.  Since I started doing all these little extras, I have not had significant damage or delays and the scooter is waiting for me at my final destination.

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Additionally, if you are cruising on your break from the cold, know that the average cabin door is only 23 inches wide and most scooters and power chairs are at least 24 inches in width.   Book well in advance to request an accessible state room (you will need medical proof now) or consider renting a travel scooter once you reach the ship.   Your travel agent can assist in this.  Scooters are not available once you board and must be reserved in advance of travel.

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The winter of Our Life (How to deal with Seasonal Blues)...

By Cherie C. Binns RN BS MSCN

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Winter is nearly upon us with its shorter days and longer nights, increased activity with holiday and seasonal events, and the added demands on our time with shopping, baking, parties, etc.  Many of us, however, do not find this as joyous a time as our friends and neighbors do.   We can be beset by fatigue, changes in appetite, a desire to curl up and “hibernate” so to speak.   We might be more irritable, sleep less well, or have less control of our emotions. The good news is that this is not something we have to live with every year if we identify why we are feeling this way and take action.    It is possible all this is caused by SAD or Seasonal Affective Disorder.

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Seasonal Affective Disorder (SAD) is a real and treatable entity that at first may look to some of us as if our MS is acting up.   It saps energy.  It wreaks havoc with sleep.   It changes appetite.   Perceptions of people and places can be altered.   Everything may start to ache.   We may think we are having a relapse due to the pain, changes in mood, possibly even distortion in vision.  In the  low light of these late autumn days and early nights and the continuance of this through the next several months, we tend to retreat from life , hole up in our homes or our rooms and not venture out and engage in the more social offerings of this time of the year.

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There are many ways to handle these symptoms depending on the severity.  Take advantage of available sunlight and do as much as you can outdoors or in natural light rather than artificial light.   Invest in a special mood enhancing lamp to illumine your work or reading area.  Invite people to be a regular part of your life or take it upon yourself to contact friends and family by email, phone or for a quiet meal.  Ask your doctor whether your Vitamin D levels may need to be supplemented.  In more pronounced cases of SAD, an antidepressant can be invaluable in lifting mood and making life more enjoyable.   For more information on SAD, check out this link: http://familydoctor.org/online/famdocen/home/common/mentalhealth/depression/267.html

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Many of us experience sensory overload during this season if we allow ourselves to be drawn to every party, religious event, sale, school play, traditional offerings at the theater or movies or any number of things that can crowd our schedules. This is a time of year for selective scheduling.

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Do you bake cookies or make candies or homemade gifts?  Look at volume, time spent and recipients.  I used to make fudge and home made candies every December.   Originally it was for family gifts but eventually began to include neighbors, people at work, my husband’s clients, tenants, people in our place of worship…   One year was particularly difficult as far as the severity of my MS symptoms and after making fifty two pounds of fudge and candy in a two day period, cutting, dipping, placing in individual candy papers, boxing and tagging all of this, I sat and cried and hurt all over from the effort of standing or sitting at the stove and stirring or dipping and the extra work of shaping each pound of confection into individual bite sized pieces that were further separated into candy papers or wrappers and boxed and labeled.  I looked at how this labor of love had grown out of proportion and decided I needed to make changes.

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Now, only family receives the time and labor of the talents and we no longer spread the “wealth” to all within our social or business circles.  You know what?  No one seems to miss it and I feel better and less a slave to deadlines and tradition.  We draw names for gifts in this family that is increasing in size with married children and grandchildren and in laws and siblings and their spouses and children.   We cut the time spent shopping and the money spent on gifts and we focus on the real joy of this dark and quiet time of year….the friendships that sustain us.

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At some point during this season that we are approaching, family and friends gather for a “Yankee Swap”.   In this event, all bring a wrapped gift and each gift is numbered.   All draw numbers from a basket and take the corresponding numbered gift.  Gifts are retrieved in the order of their  number.   Number 1 then opens their gift and if it is not something that they need or desire, can swap it with any other unopened gift.   All are then free to see what their package holds.   There are some exchanges amongst guests but generally what has been wrapped is something universally useful and all go home happy.   We generally set a price limit on the gifts of $10 -$20 (or in the case of large numbers of persons from a household…$5).   If a family of 5 is present and each wishes to participate, this makes it more affordable for all and allows each to enjoy the event.    When I was growing up, we did a similar ritual called a “bean auction”.   Each guest brought a wrapped item ….generally something recycled like an already read book, a piece of art work, a pair of new socks, an original poem,  batteries, etc.   Each gift was generally disguised with a brick in the package for added weight, marbles or pebbles that made noise when the package was shaken, used newspaper or packing peanuts or boxes were enlisted to change size and weight of the item being bid upon.   We had an “auctioneer” who would offer a wrapped package that could be passed around to determine the “value” of what might be contained therein.   Beans (everyone received a little soufflé cup with the same number of dried kidney beans to use as barter) were bid and prizes retrieved.   Beans were shared with children who had unwisely bid all on something small.  All had fun and the fellowship of the activity lifted spirits and tightened the bonds of friendship of those who shared.

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SAD does not need to eliminate your joy with activities such as this that require very little planning or expense.  If you are one of the many persons who suffer from the “winter doldrums” remember:

• You could be suffering from a very treatable recognizable disorder (SAD)
• You may benefit from more time spent outdoors in natural daylight.
• You may benefit from supplementation of Vitamin D….ask your doctor about this.
• You can have fun without a lot of time or expense and nurture the friendships that bring joy to your life.
• You can say “no” to traditions or events that have become unwieldy or exhaustive to you.
• You can minimize decorations and still have a lovely home.
• You can take control by making lists of what is important to you to be involved in.

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May this winter bring you joy and peace and health and renewal of friendships and deepening of relationships as you learn to prioritize and care for your needs while giving of yourself to those you love.

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Blessings….

Cherie

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Alternatives to Steroids

By Cherie C. Binns, RN BS MSCN

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You are having what seems to be the umpteenth relapse since diagnosis and you know by now that treating that relapse with steroids is no longer working for you.   What alternatives do you have?

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I initially tolerated IVSM (Intravenous Solumedrol) quite well and it seemed to improve my vision and my ability to walk and empty my bladder and it helped the knuckle- dragging fatigue I would experience with a relapse.    But after a year on monthly pulse steroids, I began having more and more trouble with elevated blood pressure, heart rate, sleep, anxiety, irritability than I thought was acceptable for the little benefit I could see from the dosing at that time.   My neurologist was very firm that he felt the monthly pulse was necessary with my Avonex to keep inflammation at bay enough  to prevent more damage than had already been done and felt that I was on the best treatment at the time given what was available and proven and the condition of MS as I presented.

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By two years into this therapy, I had had to add a number of additional medications to manage sleep, blood pressure, fluid retention, anxiety related to the long term high dose steroid use.   I was also 40 pounds heavier than I had been when steroids were introduced.  The weight added to the fatigue and difficult ambulation and I became more sedentary which can cause a whole new set of problems for those of us with a chronic illness.  I changed to a different DMT (Disease Modifying Therapy) which ultimately helped tremendously , put my foot down and said I would not take any more steroids (even though my neuro felt that was not the best decision I could have made at the time).  A few months later, I had some minor surgery and the anesthesiologist said that I needed a dose of steroids with the anesthesia to prevent a relapse since it had been less than a year since my last dose.   He was adamant about that and could not be dissuaded.   That single small dose spiraled me into several months of metabolic and cardiac problems.

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So…I am no longer a candidate for steroid use.   What happens if and when I relapse and need to minimize the damage to my central nervous system (CNS) now that this group of medications is not able to be used?  I found out over the past few month of MS ramping up that there are options available.

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There are several other immune suppressing drugs that can be used in lieu of steroids if necessary.   You should have a conversation with your doctor about these and weigh the pros and cons of each if a drug of this nature is called for to manage a relapse.  Most of these medications have been on the market for many years and have been deemed to be relatively safe.   Some come to us from the Transplant Arena (anti-rejection drugs) and some from the Cancer treatment arena.   If you are a person with MS who has the potential of getting pregnant or getting your partner pregnant, you need to know before starting these medications, that they have the potential to harm a fetus and therefore you must be willing to avoid all possibility of conceiving a child while on these drugs.

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CellCept (Modaphinil) has long been used as an anti-rejection drug following organ transplant.  It has also been approved by the FDA for treatment of Lupus, RA and Crohn’s Disease and , for years, has been used by some doctors to treat MS relapses when steroids cannot be used.   It is an oral medication that is taken once or twice daily but does carry a risk of PML (progressive multifocal leukopencephalaphy), at a higher rate than that of Tysabri.

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Immuran (azathioprine) , another oral therapy, is commonly used to treat a number of auto-immune disorders or used as a part of a chemotherapy program in some cancers.   It has potential to cause drug induced hepatitis if taken over a long period or with other drugs excreted through the liver.   Alcohol should be avoided while on this medication.

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Cladribine (leustatin) has been used to treat hairy cell leukemia.   Clinical trials have shown it to have some impact on MS and it is currently before the FDA for approval as one of the first oral therapies for MS and may be commercially available in late 2009 or early 2010 for Multiple Sclerosis.   It may still be prescribed off label to manage symptoms of MS relapse in those who cannot tolerate Steroids.

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Methotrexate has been a staple in the treatment of MS for years even before we had the injectable drugs on the market that we do today.   It is not recommended for long term use and seems to be more effective in SPMS (secondary progressive) than in RRMS.

Cytoxan (cyclophosphamide) is a potent immunosuppressant which has been used for years to treat SPMS or PPMS.   There have been a number of studies (many informal) done using this drug on MS patients over the years and has been found to be moderately helpful.   Howard Weiner at the Brigham in Boston spent years testing this medication and found it to be effective in about 1/3 of the cases where it was used (Weiner, H. Curing MS)    Since this drug is excreted by the kidneys, it is important to regularly check kidney and liver function.   It also, if used over time, can impact blood cell production so close laboratory monitoring is needed.   It may be given in low oral doses or higher intravenous dosing.  It may also be combined with steroids.

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All of these medications are discussed in MS for Dummies by Kalb, Holland and Geisser.   2007.   Wiley Publishing.

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I have been on a high dose of Cytoxan weekly for several doses now and it is one of the easiest meds I have taken as far as side effects are concerned.   My vision has improved as has spasticity, pain and sleep problems.  Energy levels have increased and my emotional incontinence (crying easily) is less of a problem.   I get 1000mg each week intravenously and blood work is checked before each dose to be sure I have not become too immunosuppressed.   I have lost almost half my hair with this but am assured it will grow back.  My treatment is not to be confused with HyCy http://www.latemstunnel.blogspot.com/ which seeks to wipe out and reboot the immune system.  You will find more information on that treatment on MS Views and News blog, Website, and Facebook.

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Written for MS Views and News

September 9, 2009

Cherie C. Binns RN BS MSCN

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PLEASE visit OUR BLOG, “Stu’s Views and M.S. News” - to leave comments or if you have any questions for Cherie. – Thank you

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By Cherie C. Binns RN BS MSCN

Lately, it seems I have been hearing from a number of folks who read this website as well as on MS Forums and Chat rooms that they have gone off all therapy for MS because “the treatment is worse than the disease”. Some are even refusing MRIs to document whether their illness is stable, progressing or may not even be present. Most have refused LPs (lumbar punctures) to confirm that they have MS because of potential dangers associated with the procedure (pain with the procedure, spinal headache, potential need for blood patch, etc).

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I started with MS long before we had treatment for the illness and diagnosis was difficult to pin down because docs did not want to “pronounce a death sentence” on a young adult when they might live a fairly normal life if they were oblivious to the illness’ presence. For 19 years, I had classic relapses and remissions with vision loss, spasticity, numbness and tingling, incredible fatigue, cognitive and emotional symptoms, and bladder/bowel symptoms. My caring doctors wrote this off to stress since I was a mother of two young and active children and I worked second and third shift so my husband could work days and one of us always be with the children. So on top of all this, I was sleep deprived and my one stable adult relationship was compromised by work schedules.

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Finally in 1994 (first episode landed me in the hospital in 1975) when I did not regain the center of my vision after an episode and it was already 10 weeks into the symptom cluster, I went to my ophthalmologist to find out why there was a constant cloud in the center of the visual field of my left eye. He said my vision basically was unchanged from the previous visit, I was becoming a little far sighted due to my being over 40 but otherwise, my exam was normal. Frustrated, I decided it was time to get to the bottom of this and not stop until I had answers. I drew out my left eye and penciled out an amoeba shaped blob in the center of my visual field through which, I could see light but no detail. He did visual field testing and within 5 minutes of the test being completed, came out shaking his head. He laid my drawing over the computer generated print out of the usable vision in my left eye and they were a match. I had not been able to see the tiny points of light in that area. So, he took a closer look at the back of the left eye and noticed this time that the optic disc was pale and retracted and the optic nerve pale and atrophied (shrunken). This can only be the result of repeated episodes of Optic Neuritis (ON). A full 90% (according to the NMSS and Consortium of MS Centers) of newly diagnosed persons present with ON as the first major symptom that leads them to seek a diagnosis.

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The ophthalmologist still seemed puzzled. He had known me personally, socially, professionally for more than a decade and I seemed like a competent and energetic person. “What do you think is going on”, he asked. I replied, “Well, I’ve had a half dozen episodes of vision loss like this that have lasted several weeks to several months then seemed to resolve. Along with that, I tend to trip over my toe and have fallen on several occasions. My left foot goes numb when I am on stage singing and I’ve had to be sure there is a stool present to sit on so I can safely make it off the stage. I have trouble emptying my bladder. When I get on the phone with physician’s offices at the end of the day after seeing patients (I was working as a Home Care Nurse) I often cannot find words to describe what is going on with the patient and what I feel needs to be ordered or changed for treatment even though the notes are right in front of me. I cannot think or move when it is very hot. I think I may have….MS.” I will not print his response!

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To his credit, he ordered an MRI of the brain with and without contrast (fairly new technology at that time) and made an appointment for me at a major MS center a few hours from where we live. On December 8, 1994, the mystery symptoms came to light with the diagnosis of MS. Looking back at an old CT scan from 1987, they could see scaring where lesions now appeared. But there was only one treatment for MS available….Betaseron….and there was a lottery for its use and it was being given to only the most seriously impaired persons at that time.

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By 1996, a new neurologist took over my care. He was “99.9% sure” I had MS but at that time there was only an extensive history and MRI to go on. He ordered Evoked potentials, EMG, LP, read them himself and pronounced that I did not have MS but a psychological disorder and refused to put me on medication (which by now was readily available). Meanwhile, I was falling more, was using a cane, had lost my job.

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1998, I was back at the MS center where I was diagnosed for another opinion. Using 2 canes now, having trouble seeing well enough to drive at night or in the rain, self catheterizing intermittently when my bladder would not empty. Two more lesions on the MRI. I saw a resident at that visit. He spent nearly 20 minutes with his back to me reading my chart and asking questions. “What makes you think you have MS?” “Are you suicidal? I see you’re on Zoloft?” He then proceeded to do such a brief, rapid neuro exam he could not have seen deficits if they were screaming at him. And he pronounced me in the wrong clinic and offered a referral to psych. Mad? Doesn’t even begin to describe my feeling at that moment. I insisted he get the MD who had diagnosed me. When he came in the room, I asked him if there was some reason I was seeing a resident today instead of himself. I have forgotten his reply. I asked him if he’d ever watched this resident do a neuro exam. He said he had not. So I asked him to watch and instructed the resident to do the exam again. This time, with mentor watching, he took a couple of minutes rather than 30 seconds. I commended him for spending a bit more time then proceeded to tell him what he had missed in the exam and why certain parts of his exam needed to be modified to pick up deficits. The attending agreed and the resident was dismissed. Yes, I still had MS but looked good and did not need meds (there were now three on the market). He never watched me walk with the two canes or struggle to stand unassisted and I went home in tears.

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By 2001, I was legally blind and not able to drive anymore and was using a scooter full time outside the house and canes and wall surfing indoors and had become isolated. I could no longer attend evening rehearsals of a chamber choral group I had helped to found years earlier. I was cutting back on my music ministry role at church because I could no longer see music to lead the congregation and had to memorize everything and Thursday evening rehearsals were often too fatiguing. I was not able to work because cognitive issues had taken root and the memory and data access necessary for nursing and consulting had been compromised by the MS. I found a new neurologist who offered me the first treatment in the 7 years since diagnosis (26 years now with MS documented symptom clusters of relapses and remissions). He put me on 5 days of high dose IV steroids and a week later discovered that the neurological exam was less “off” and mentally I was “sharper”. So he told me he was putting me on Avonex, a weekly interferon that would work with the steroids monthly to keep the disease from progressing further. That helped for a while then the steroids began to wreak havoc with my cardiovascular system. I had been researching other therapies and asked to go on Rebif (4.5x the weekly dose of Avonex in three divided injections) and off the steroids. My neuro said “You won’t like it. There are too many side effects. I personally have never prescribed it because of that.”

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How does one counter that? I asked him if the side effects of the medicine were worse than the side effects of the MS? He asked what I meant. I said, “I can’t see well enough to drive any more and can only get around outside the house in a scooter so must find someone to drive my car which can carry the scooter. They must then help me load and unload it which has limited the pool of people available to help. I have to catheterize to empty my bladder. I wake no less than three times an hour due to pain from spasticity at night and the meds have side effects that are difficult to take. I cry at the drop of a hat and the Zoloft does not help and I have put on 30 pounds from the meds.” He admitted he had never thought of it that way and agreed to try the Rebif. Three months later, I walked into his office without canes or scooter and he did not recognize me.

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That self advocacy put me on track to change life style habits, diet, exercise, get off most of my other meds over time and under the direction of my PCP (Primary Care Physician), and, although I had to deal with injection site reactions with the Rebif and occasional flu-like symptoms, I felt I had taken control of my life back.

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I can honestly say none of the tests (MRI, Evoked potentials, EMG …4” needles repeatedly inserted into the muscles of the arms and legs and electricity applied to test muscle response, LP), were worse than the debilitation and pain I had experienced with MS. I can honestly say none of the meds I have taken to manage the disease have been worse than the disease itself. Some of the symptom management meds had side effects that were hard to take but by controlling exercise and diet, I no longer needed meds for spasticity, nerve pain, depression and those side effects were eliminated.

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I know this is a personal decision …. Whether to take meds to slow the progress of the MS… but my personal opinion is that newly diagnosed persons are not equipped to make that decision because they have not had the chance to see what untreated MS has to offer at its worst. They might get a course of steroids to knock down a relapse and feel that they’ve “beat this thing” again and still don’t need to take shots.

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Many of the people I’ve spoken to recently (some who read my writing on Stu’s Views and email me with questions) are not on meds because of the “side effects”. Like me, they were told by their docs that they would not like the side effects and they believed the doctor and opted not to treat their illness (unlike me). Some are scared of needles so won’t have the LP, EMG or other tests done to determine the extent of involvement of the disease process. Many report claustrophobia and avoid the MRI like the plague. I admit I used to have to take valium before “shooting the tube” but have learned to meditate while in there now and can do it without premedication. Some, like myself, have pain while on that hard surface unable to move for an hour or more. That pain is not permanent and gets better once you are up and moving.

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I think the 26 years of having MS before being treated were a gift in hindsight. I learned how bad MS can be. I learned how it can limit my life. I learned how it can change the way I see myself. And I learned that I can control a lot of that. I can control my diet. I can control my exercise plan. I can control what I take to prevent the MS from doing worse than it has already done. I can choose to communicate with others rather than stay in a shell at home and let blue moods rule the day. I can do things that I find joy in and be active to a degree with my grandchildren and husband. I can kayak, swim, cruise, enjoy a car trip (as long as we stop every couple of hours for stretching and bathroom breaks), I can take a cruise and see worlds I’ve not seen before, I can serve the community through church or Rotary or Habitat for Humanity. MS is something I have learned does not have to dictate limitations on my live and my loves.

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There is no sanctioned treatment out there that is worse than MS itself. And there are not tests needed to prove the MS that cannot be borne with dignity and help to prove that I am (you are) not crazy and I am (you are) valuable and I (you) can be an asset.

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So please, if you are reading this and have MS and are not on some form of treatment to slow the progress of the disease, or are not getting recommended tests to firmly diagnose the MS or track it’s progress, rethink that decision. The MS Association of America has a program to help uninsured or underinsured persons get an MRI to track the effectiveness of your therapy or the fact that you are stable on therapy or unstable without therapy. Do not let “ignorance be bliss” for you. Learn about your enemy and take what you learn to fight what MS may send your way and take charge of your life.

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Leave comments for this story by returning to our blog page or clicking here

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Written for “MS Views and News” on August 16, 2009

By: Cherie C. Binns RN BS MSCN

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MY Personal thanks to Cherie for writing this article.

Best Wishes, Stuart Schlossman

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By Cherie C. Binns RN BS MSCN

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We are in the midst of summer with all of the fun and challenging opportunities available to us only at this time of year. Although this has been an unusual summer for many of us due to weather pattern shifts, there are still many things you can do alone or with family that are relaxing and fun.

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There are some very important points to keep in mind if you are a person with MS or just if you love a person with MS.

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1. Stay well hydrated.  Even mild changes in your schedule that create a little (or different types) of energy expenditure can cause mild to moderate dehydration as the temperatures increase.   Get plenty of water and non-caffeinated, non-alcoholic fluid intake to prevent fatigue and confusion or cognitive changes. If you are one of those persons whose ability to perspire is impacted by MS this is especially important.

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2.  Remember to protect yourself from harmful UV rays by using a UVA and UVB sun block of spf 15 or higher.   For some of us with very fair skin you might want to consider an spf of 45 or higher.   These products are becoming better each year.   If your sunscreen has been on the shelf for the last couple or three years or longer, it is time for a new bottle as , just like medication potency, your sunscreen may lose some of its effectiveness as it ages.

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3.  If you plan to travel, plan ahead.  Booking air and travel packages early will often save you considerable money that can be later used for a special meal or souvenirs .  If traveling by road, look into the services offered by companies such as AAA that will target hotels with pools, A/C, and will also tip you off as to where there is ongoing construction and offer a way around it to save time, gasoline and frustration.

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4.  Heat can provide many of us with difficulty functioning as it gets warmer and you may need to consider getting some help managing your body's response to the heat and avail your self of one of the many cooling devices or programs out there for people with MS.   www.msaa.com or  www.msfacts.org both have programs where you may receive cooling products at no charge to you if you qualify.   I never thought I could qualify but I did so apply. Some companies, like www.heatreliefdepot.com has hundreds of different types of cooling products for sale at a very reasonable cost.   At check out, if you enter a note in the comment section prior to your order being submitted that you have MS, they will give you 10% off your entire order.  AND if you get a product that you find helpful and write a review on it for them, you get an additional 15% off your next order. Additionally, there are many sponsors on this site that offer cooling products. Please let them know you read about them here so they know their target market is seeing their ads.

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Be well, travel safely, don't overdo in the garden, keep your cool, and have a wonderful summer..

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Return to our Blog to leave comments for this article - thank you

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In the fall of 2006, when I first began “Rehab My Way” I could not have imagined how well it would work for me nor could I have fathomed the interest other people with Multiple Sclerosis (MS) or mobility problems would have in what I was doing. As a result of severe osteoporosis in my feet (several non-healed fractures over the period of a year) I was advised that my walking days were over and a motorized chair was recommended by several physicians and physical therapists as a lifestyle change. Water exercise, I was told, would allow me to keep joints active and mobile without stressing the fractures more and might also relieve some of the joint pain I was experiencing from inactivity.

After trying out the public pools that were available in our area, it rapidly became clear that the exhaustion factor and inaccessibility of wet pool decking to someone in a chair or on crutches made them not only unsafe, but impractical for my needs. So we looked for alternatives. Thank goodness the Economic downturn (recession?) had not begun to radically impact our lives at that point and we had more choices to meet this need than we have in today’s economy. We shopped the Internet for various forms of pools or water therapy areas that we might add in the yard or on a deck or porch or in a small addition to the house. Because I have never enjoyed swimming and I literally broke bones doing a flutter kick with my left foot, something like a lap pool or endless pool where one swims against the current did not seem to be the right solution.

I was already doing a number of stretches from the National Multiple Sclerosis Society’s Stretching with MS and Stretching with a Partner with MS (available at no charge to those with MS who call their local chapter or 1-800 FIGHT MS and request them). But the fatigue and heat sensitivity factors were so great, I could not work for more than 5 minutes without Uthoff’s Symptoms developing. This is a condition where overheating can make symptoms of MS worsen or reemerge if they are not currently active. So, I faithfully did my 4-5 minutes of stretching and exercise 4 times each day and pretty much kept off my left foot.

We found a 7 foot diameter Jacuzzi at a local pool show for about half the retail cost and also purchased Versarails TM, a movable position support bar, and built a deck off the downstairs bathroom to set this into. As we got going on this, the project grew. I know that cold is just as detrimental as heat to many of us with MS (myself included) so could not see me going out onto the deck in the rain or snow to get in the water and exercise. As a result, walls and a roof were added and a door connecting the bathroom to the therapy room was installed.

I began by getting in the still water three times a week for about 10 minutes each time and doing my stretches with the aid of the Versarail TM for support and balance. Sitting on the benches of the Jacuzzi gave me the stability I needed to get some of the muscles stretched that I could not get on the floor. I gradually added some strengthening exercises to the stretches with the aid of Pilates Tubing (You can obtain this from gyms, Stores like Sears or TJ MAXX or your physical therapist). As the moves became easier, I shortened the tubing allowing for more force to be exerted on the targeted muscles. Within months my routine had expanded to 30 minutes 5 times weekly and I had begun walking unsupported and pain free. Please remember as you read the routine that follows, that this routine has evolved over two and a half years. You must start slowly and progress slowly in order to get to the point I describe below.

You can view the description of the exercises I was doing a year ago in Rehab MY Way at this link: http://www.msviewsandrelatednews.tecnogeeks.com/blog5/index.php?itemid=968&catid=31

Someone recently asked me for that link to see what my routine was and I became aware that what I do now has little resemblance to what was written fourteen months ago in the last edit of that article. Today, I focus on stretching, strengthening and cardiovascular workout. This routine lasts between 45 and 50 minutes 7 days a week and looks a bit like this:

• 50-100 pull-ups using the Versarails TM
• Still supported by Versarail, I twist from side to side bringing top leg straight in front of me with toe flexed to stretch the muscles down the entire back of the leg. At the same time the bottom leg is kicked back behind me to stretch the muscles down the top of the thigh. I’m not into a full split yet but suspect with more work that can be achieved.
• Sitting on a bench under water, cross legs with outside of ankle resting on opposite knee. Push down on top knee so inside of thigh is stretched. While holding this stretch, lift foot on the floor as high as you can to stretch the muscles of the buttock of the top leg. Hold for 20 seconds then switch legs. You may need rails for support while doing this.
• Sitting on bench sideways with legs straight in front of you, place foot of outside leg in handle (stirrup) of Pilates band and shorten band through rail to the length desired to give appropriate tension to the next move. Keeping pelvis straight and tummy in (no arch in back), move the outer leg as far out to the side as you are able, hold a few seconds and bring it back to center. This works the muscles of the inner thigh and back of the leg. I now alternate this move with a downward move to the floor of the pool and an upward move where foot is out of the pool so I work the hip in three different directions while in that position. Currently I am doing 40-50 reps of this on each leg but started out with 5.
• While in this same position, shorten Pilates tubing to about 12 inches and place the inside foot in the stirrup. Outside leg now has the foot resting on the floor of the pool while the leg closest to pool wall is brought across center line of body stretching the muscles on the outer thigh. You may vary this move by moving leg out with toe up, heel out or toe out. You will feel which muscles are being worked with each position change.
• Move body 90 degrees on bench so that outside leg is now against another wall of the pool and repeat the above two sets of exercises from the new angle.
• With Pilates tubing over Versarail TM in front of you, grab handles in both hands and pull forward and down as far as you can reach while keeping back completely straight. Next, move forward and out to the sides as far as you can stretch. Try moving hand position so your palms face down, up sideways to work the muscles on all sides of the arm. Be careful not to extend arms behind your back while doing this as some discomfort between shoulder blades can result.
• Stand using a higher seat or the edge of the pool for support and place one foot behind you, foot flat on the floor, and lean forward keeping your back straight. This stretches the muscles down the back of the leg (calves and hamstrings). Switch legs and repeat.
• Grab an ankle behind you and pull upward on the leg to stretch the muscles on the front of your upper leg (quads). The higher you pull your ankle, the greater the stretch of muscle. Please be careful not to arch your back but keep it straight while doing this. Switch and repeat with the other leg.
• Kneel or stand in center of pool (depending on depth of water) and reach a hand fully extended into the air. Slowly bring the straight arm over your head and hold till you feel stretch down your side. Repeat with other arm. Then change angle so you are reaching forward at a 45 degree angle with each arm and backward in a 130-140 degree angle with each arm. This last move should be avoided if you have damage to lower back or experience discomfort with the move. You will easily be able to tell that the muscles of your torso and upper abdomen are getting a workout with these moves.
• Finally, I sit on the seat and do several minutes of just kicking with toes pointed up, down and relaxed. This adds an element of aerobics to the strength training and stretching.

Remember to keep your moves fluid. Breathe throughout the exercise. Drink 8 ounces of water for every 10 minutes of exercise in the hour following your workout so you flush your system of toxins released during the muscle work. You will have less soreness and greater ease of movement if you are faithful to rehydrating. And remember…easy does it. You will not get to this point overnight. It has taken me more than two years to be able to do some of these moves. Reread “Rehab My Way” for recommendations on some of the earlier and easier moves.

People frequently ask me about water temperature. This can be a very individual question. Personally, I have problems with spasticity if the water is cooler than about 80 degrees. In the winter when the room temperature is cooler (60 degrees) I keep the temperature of the water between 88 and 90 degrees. In the summer when the air temp might be 85 or 90, I keep the water set at the lowest temp (80-85). If you have control of the temperatures, find what feels best and tires you least. Remember, I can exercise on the floor for just a few minutes without Uthoff’s developing but I can work in the water for 45-60 minutes with no resumption of MS symptoms.

With the combination of daily exercise, Calcium, Vitamin D and medication to halt osteoporosis, I have seen a 4.9% increase in bone density over this past year on my scan done in February 2009 over the one done in February 2008.

So….know yourself. Find what works for you. Look for facilities, place and plan that you can stick to and get on with Rehab or Exercise your way. Check with your doctor or physical therapist before embarking on any new exercise program. Oh…finding the right music to keep me going or help me count has been a real boon to extending the workout. It is a lot easier to do aerobic work with a beat well past the point where you might have stopped in a quieter environment. It has worked for me and it can work for you!

Cherie C. Binns RN BS MSCN

March 27, 2009

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