Tuesday, August 7, 2012

A Piece of Peace

Did you know that acceptance is a choice that you have full reign over? Now they tell me! I do have some choice in this horrific disease.

But, there’s a catch.

I saw a tall case of stairs the other day, it nearly brought me to tears. Why? Well, mainly because today I’m downgraded to a wheelchair. While not too long ago I would have happily opted to take on those stairs, now I can’t. So, in the cloud of my sorrow, before I could even collect myself, my husband dared me to think about what I could do. All I wanted was to pay respect to the part of me that’s likely gone forever, but dwelling on those memories encourages my denial of the acceptance of what is now.

 “Of course there is no formula for success except, perhaps, an unconditional acceptance of life and what it brings.” ~ Arthur Rubinstein

I have heard that acceptance is a roadway that can lead to enduring happiness. If that’s the case can someone please get me the Book of Acceptance 101? Because every time I think I’m there I get a nice slap in the face. They say that part of the beauty of life is that it’s forever changing.

Well, I should have one up on that because I’m living with an unpredictable incurable disease. I have no choice but to go with the flow. If I don’t I just create more turbulence for my own self. And who needs that? I know it’s tempting to lean towards anger and frustration. But we help ourselves so much more if we don’t.

“We need to develop the habit of looking at whatever happens through a positive mindset, instead of a negative and defeatist one.” ~ Ana S.

Now to be honest, I’m still working on that one. I mean I’m not a pessimist, but that’s a tall mountain to climb.  I also must reluctantly admit that things and people have come into my life since my diagnosis that otherwise would not have - a host of supportive others battling this very same thing. People who understand; first hand. Not exactly a reason to elect to have MS, but it’s what happens when you slowly seek out the positive in a not so positive situation.

The fact is I can no longer climb that monstrous flight of stairs, but there are still things that I can do. If I can just hold on to that frame of mind, life becomes more bearable for both my husband AND me. After I dried my eyes, passed those darn stairs, and remembered my abilities, I discovered to my own surprise … a piece of peace. Who knew?

I guess I should again grudgingly thank my husband.



  1. loved your article...have experienced same emotion, whether it's stairs or just 1 step. I use a cane or walker, depending where I'm going. A lot of different people have entered my life since I retired and collect disability. It's been about 6 years. Just go past those damn steps and realize someone who is not so caring must have designed them.

    1. You put a smile on my face just now. Thanks!

    2. Nicole, you're absolutely right! There are a few things that I really don't do anymore for fear of falling (again), so I simple find other ways to do them. I don't dance on my feet anymore; I "chair-dance". I just get into the rhythm as it gets into me and I do whatever moves I can from a seated position. It's pretty good.

      I have also been daunted by stairways, especially in public places. When I meet one of those I simple call whomever on the phone and ask them to come down to meet me on equal territory. You know what? It works.

      There's a way around every obstacle: don't see it as a obstacle!

  2. Nicole,

    Thanks for the article. I just attended my 3rd Yoga class yesterday (wanted to quit but made myself go). I am very stiff and less moble which causes me frustration that I can't do or hold simple poses anymore.

    But !!!

    Like you, I have a very loving and supportive wife (27+ yrs) who constatly challenges me to look at ways to accomplish what I can do and not focus on what I can no longer do... She run's a 10k race, I ride my bike along side... she shops at Walmart .. yep that's me riding a scooter cart ! ... I also tried swiming yesterday because I felt strong enough to get in the pool..

    I guess you are right .. it is all about attitude... and just trying to get going !!!!

    Keep moving ya'll !

  3. Although our bodies own a part of our brain that we can't always maintain control over, our brains do seem to have an amazing ability to push us in the direction of our will.

    I firmly believe that we can choose each reaction to the very difficult stumbling stones in life. I've spent weeks in bed due to MS, but I've also recently swam 5 miles. I take one day at time.


    1. that is awesome! I love water aroics, my feet have not left the pool floor in 6 years when I was diaqosed...does not make sense, but you're amazing!

    2. Hi poetic. I swim 1.62 km every morning. I guess that's about a mile. Sometimes, when I'm in the sea, I'm sure I go way past that. Well done that you swam 5 miles! How long did it take you? Did you take breaks during the swim? Was it in a pool or open water? How did you feel afterwards?

      Sorry for all the questions. I really admire your accomplishment.

    3. I like that. It gives us more control,

  4. hiya nicole! love your take on piece by peace and with you all the way from olympic 2012 crazy britain;dohnut here missed the torch bearer running through old town croydon,ate some mind with me mum,sis,neice, youngest daughter and her bestest buddie. still a moron head thinking it's ok to close a window standing on a dining chair;another bubble writing exercise for my wall at home. in welsh today as follows "nid oes sail ar gadair buryta i gau ffenest" aka "no standing on dining chair to shut window". no broken bones yesterday morn as per paramedic crew. yay to our nhs. :)))))))))))))))))))))

  5. Chronic cerebrospinal venous insufficiency (CCSVI), or the pathological restriction of venous vessel discharge from the CNS has been proposed by Zamboni, et al, as having a correlative relationship to Multiple Sclerosis. From a clinical perspective, it has been demonstrated that the narrowed jugular veins in an MS patient, once widened, do affect the presenting symptoms of MS and the overall health of the patient. It has also been noted that these same veins once treated, restenose after a time in the majority of cases. Why the veins restenose is speculative. One insight, developed through practical observation, suggests that there are gaps in the therapy protocol as it is currently practiced. In general, CCSVI therapy has focused on directly treating the venous system and the stenosed veins. Several other factors that would naturally affect vein recovery have received much less consideration. As to treatment for CCSVI, it should be noted that no meaningful aftercare protocol based on evidence has been considered by the main proponents of the ‘liberation’ therapy (neck venoplasty). In fact, in all of the clinics or hospitals examined for this study, patients weren’t required to stay in the clinical setting any longer than a few hours post-procedure in most cases. Even though it has been observed to be therapeutically useful by some of the main early practitioners of the ‘liberation’ therapy, follow-up, supportive care for recovering patients post-operatively has not seriously been considered to be part of the treatment protocol. To date, follow-up care has primarily centered on when vein re-imaging should be done post-venoplasty. The fact is, by that time, most patients have restenosed (or partially restenosed) and the follow-up Doppler testing is simply detecting restenosis and retrograde flow in veins that are very much deteriorated due to scarring left by the initial procedure. This article discusses a variable approach as to a combination of safe and effective interventional therapies that have been observed to result in enduring venous drainage of the CNS to offset the destructive effects of inflammation and neurodegeneration, and to regenerate disease damaged tissue.
    As stated, it has been observed that a number of presenting symptoms of MS almost completely vanish as soon as the jugulars are widened and the flows equalize in most MS patients. Where a small number of MS patients have received no immediate benefit from the ‘liberation’ procedure, flows in subject samples have been shown not to have equalized post-procedure in these patients and therefore even a very small retrograde blood flow back to the CNS can offset the therapeutic benefits. Furthermore once the obstructed veins are further examined for hemodynamic obstruction and widened at the point of occlusion in those patients to allow full drainage, the presenting symptoms of MS retreat. This noted observation along with the large number of MS patients who have CCSVI establish a clear association of vein disease with MS, although it is clearly not the disease ‘trigger’.For more information please visit http://www.ccsviclinic.ca/?p=978

  6. MS as a General Disease Condition
    Since keeping the jugular and azygos veins fully open is the key to reducing MS symptoms, it is of paramount importance to know what other post-procedure factors would create enduring effect in the venous drainage flow. All therapeutic modalities and interventions that could potentially affect the successful outcome of the ‘liberation’ therapy need to be included in the context of the treatment to establish which combination of therapies support the best long-term outcomes. Our own studies have so far shown that additional stem cell transplantation therapy done in a particular sequence immediately following the venoplasty, has led to increased luminal diameter and improved patency rates in the jugular veins. Since new clinical evidence also suggests there may be more than one primary cause in MS, and the need to create a multifaceted approach to therapeutically targeting MS as a general disease condition, it may not be appropriate to apply only ONE strategy. Based on the new histopathological discoveries outlined above, any advanced approach to treating MS obviously concerns itself with the reduction of the damage to the CNS, and to restore nerve function caused by neurodegeneration so as to prevent or delay onset and subsequent disability. By correlation, vascular pathology is part of this syndrome and cannot be ignored in isolation. The synthesis of therapies has demonstrated that patients treated through this protocol recover with:
    · increased and faster neurologic improvement,
    · enhanced angiogenesis and
    · less pathological regression of the blood vessels,
    · better and longer-term patency rates,
    · less adverse metabolic reaction,
    · much less risk of catastrophic iatrogenic injury to the veins leading to
    · less intraluminal scarring and
    · less risk of second, third and fourth procedures to open veins
    Also, in this way, infused stem cells may work to heal ALL damage to the veins throughout the body, and may in fact serve to reduce or eliminate additional venous disorders and co-morbidities not yet fully associated with MS (May-Thurner Syndrome, among others).
    Observational and statistical evidence from case studies into the sequential combination therapy that includes both venoplasty and stem cell transplantation has confirmed five beneficially therapeutic effects for MS:
    1)      Jugular Vein Dilation Otherwise Known as Liberation Therapy. The vein dilation or venoplasty therapy provides the appropriate drainage of the CNS that prevents a retrograde pressure exertion on the myelin sheath covering the CNS. Whatever triggers the autoimmune system to turn on in people predisposed to MS, this back-pressure needs to be resolved. In case after case, the typical symptoms of MS retreat in individuals where the veins are expanded and the flow pressures are equalized. Good case study observation and statistical analysis of disability scale quantifications for subject samples taken post-procedure eliminate the biases inherent in the system to permit this statement of confirmation. (Personal Note: Some of the conjecture that passed for ‘conclusions’ in the NL study are quite frankly fraught with inherent biases.For more information please visit http://www.ccsviclinic.ca/?p=978

  7. 2)      Keeping the Neck Veins Open Long-term. Since keeping the jugular and azygos veins fully open is the key to reducing MS symptoms, it is of paramount importance to know what other post-procedure factors create enduring effect in the venous flow. For example, there is now good clinical and observational evidence to support the fact that stem cells (transplanted intravenously at the time of the venoplasty) reduce swelling, thrombin buildup, clotting and subsequent permanent intraluminal damage leading to scar tissue. As to what has already been established through clinical trials and subsequent therapeutic practice, it has been found that even in patients with severely malformed or abnormal jugular vein structure, the intravenous introduction of Mesenchymal stem cells (MSCs) post-operatively has served to repair injury attributable to venoplastic damage and desquamation of the endothelial and subendothelial cells of the interior venous lumen (tunica intima). Peak velocity, time average velocity vein area, and flow quantification have been assessed by means of echo colour Doppler at periodic intervals post-venoplasty. Significant hemodynamic improvement has been recorded at the level of the veins in the neck post-venoplasty. Moreover, this additional stem cell transplantation therapy has led to increased luminal diameter and improved patency rates demonstrating that the introduction of stem cells post-operatively significantly modifies the hemodynamics of the jugular veins more effectively than venoplasty alone..3)      Post Procedural Monitoring to Avoid Second and Third Procedures. Having followed up with patients who had restenosed (in the dilated jugular veins) within hours, days or weeks of their procedure, discontinuance of postoperative monitoring, or even the lack of access to medical care following surgery does not seem reasonable especially given that the site of the disease is subject to iatrogenic injury (injury occurring as a result of the procedure) as well as significant postoperative complications (thrombosis/restenosis). For more information please visit http://www.ccsviclinic.ca/?p=978

  8. 4)      Stem Cells Turn Off the Over-aggressive Immune System. Mesenchymal Stem cells or MSCs actively interfere with immune tolerance. Recent studies have identified and confirmed the biochemical responses within the CNS. The mechanisms involved in MSC-mediated effects provide important insight into the pathways responsible for the therapeutic benefit observed following MSC transfusion. Once transfused, MSCs turn off the over-aggressive immune system.   This immunosuppressive effect of MSCs is stimulated by IFN-γ, a dimerized soluble cytokine and other inflammatory cytokines. In short, these combinations of cytokines induce MSCs to express inducible nitric oxide synthase (iNOS) and result in production of elevated levels of Nitric Oxide, which induce immunosuppression.
    5)      Stem Cells Natural Homing Characteristics to Locate and Repair Damaged Tissue.Mesenchymal Stem cells (MSCs) are known for their properties of immunomodulation, anti-apoptosis, angiogenesis, anti-scarring, homing through chemoattraction and support of growth and differentiation of stem and progenitor cells. These adherent stromal MSCs derived from bone marrow are extended in culture to generate differentiated progeny in response to a diversity of manipulative in vitro protocols (via chemical stimulation and/or use of growth factors). Once transfused in vivo, MSCs naturally localize to damaged tissue sites, and an environment is set up for regeneration and recovery of all tissue and neurons that have been damaged by disease. MSCs also secrete molecules that set up a favorable setting for tissue repair that avoids the formation of scar tissue. Where Glial scars and lesions had previously formed and where the glia actually produce factors that inhibit remyelination and axon repair, the MSCs overcome the natural inhibitors and optimize the environment for maximum regrowth potential. Immunological testing of lymphocytes and cytokines within the treated patient population has demonstrated the immediate immunomodulating results of MSCs within as early as 2-6 hours post-transplantation. The likelihood of both long-term neuroprotection and neuroregeneration by way of in vitro differentiation of MSCs into cells of the neuronal or glial lineage has been demonstrated in early clinical studies and observational case reports.For more information please visit http://www.ccsviclinic.ca/?p=978

  9. Regarding the ‘Liberation Therapy’ in Isolation of Additional Support Strategies
    Current popular protocols for the ‘liberation’ procedure are not by themselves adequate to therapeutically benefit subject patients for symptomatic treatment outcomes for vascular and CSF mediated neurologic damage as they do not either acknowledge or guide us toward additional potentially safe and effective long-term treatment strategies. The large number of MS patients restenosing post-procedure has thus-far demonstrated a clear gap in the understanding of the CCSVI venous angioplasty therapy protocol. The CCSVI Clinic strategies account for MS as a general disease condition, sequencing the therapies for best effect:
    The CCSVI Clinic Protocol Combination Repair and Regeneration Strategy 
    · Marrow-derived Adult Autologous Mesenchymal Stem Cells
    · Stem Cells are infused into Jugular Veins and intrathecally into CSF
    · Formation of Glial and Cell Scar Tissues are Inhibited
    · Supports growth and differentiation of Stem and Progenitor Cells
    Repair and Regeneration Strategy Benefits
    · Permanent Remodeling and Intraluminal Repair of Diseased Veins (Angiogenesis, Anti-scarring)
    · Stops new Neurogenerative Disease activity
    · Blocks Neurite Outgrowth Inhibitors, increases Axonal sprouting
    · Olig-1 Activation, increases OG Differentiation
    · Increases Neuronal Survival and Regenesis
    Typical responsive outcomes to this therapeutic protocol are being closely followed in 28 patients at this time. One of the most disabled patient’s (EDSS 8.0) improvements have been listed below. This patient has not had any motor function or sensation below the waist for 10 years. He is now able to walk short distances, 60 days after his therapies and is seeing improvements each day:
    Common Clinical Symptoms of MS have diminished within 60 days
    · Optic Neuritis (previously only 30% vision in right eye returned to 100%)
    · General Weakness (return to normal, energy levels very high)
    · Sensory (able to withstand hot and cold temperatures normally)
    · Cognitive Dysfunction (previously significant, return to normal)
    · Fatigue (Return to near-normal, some fatigue due to rapid neuronal and muscle tissue regrowth)
    · Bladder Dysfunction (previously totally dysnergic, now near-normal)
    · Bowel Dysfunction (previously neurogenic, now returned to normal)
    · Cerebellar Dysfunction (still seen in walking gait, but improving rapidly)
    · Spasticity (muscles contract and relax normally)
    · Sexual Dysfunction (previously no desire or ability, now normal).For more information please visit http://www.ccsviclinic.ca/?p=978

  10. ‘Liberation Therapy’ by itself is Not Adequate for Long-term Recovery
    A just-released 2011 study commissioned by the Newfoundland/Labrador Provincial Government regarding the benefits of ‘liberation therapy’ in a population of 30 patients showed ‘no measurable, objective benefit’, one year post-therapy. However, most participants did self-report significant improvements in their physical and psychological well-being for the first 90 days post-procedure. This observation is completely consistent with what the patients contacting CCSVI Clinic are reporting since many have now had the CCSVI procedure done ‘somewhere else’ where neither an aftercare protocol nor supplementary interventional techniques were supported. To date, all patients seeking additional therapies for CCSVI have reported that their presenting symptoms returned, mostly within the first 6 months. However, a significant number also reported that the beneficial effects of their first therapy only lasted a few days or weeks. Indeed when these individuals were subsequently re-treated at CCSVI Clinic, their MRV imaging consistently showed IJV blockages or stenoses ≥ their previous DU or MRV images. Although the NL study conjectures that such benefits (alleviation of typical presenting MS symptoms) could be the result of the placebo effect, it is not possible to make that statement. Preliminary results from the CCSVI Clinic’s own studies show that when the venous drainage flow equalized, the presenting symptoms of MS disappeared. The NL Study did not image the veins pre and post-procedure at the appropriate intervals to make comparisons, so any statement beyond their single conclusion would be not only be highly speculative, it also clearly reflects the author’s inherent bias.
    The hypothesis put forward by the CCSVI Clinic research group is the guiding principle of the CCSVI Clinic’s protocol. Therefore, as more patients treated through the Clinic continue to demonstrate clinical improvement above the median indicators, the research group is working towards confirming the observational data through the feedback analysis of patient case study evidence. This will allow a prospective cohort study currently approved through an IRB application to collect data on records made available through medical files prior to the therapy protocol, at the time of the procedure, and then by regular patient follow-up (case study data). Patient registry and supervision of data is through the hospital IRB Board. The study is exclusionary (based on EDSS scoring) and only patients diagnosed with MS will qualify for the study. All qualifying patients must participate. It should be noted that all patients freely self-select the CCSVI Clinic and are not pressured into any decisions. The Clinic does not actively recruit patients and intends to seek informed consent for participation at the time of application for treatment; if informed consent is given, all individual patient data will be entered into a dedicated and aggregated database for analysis that will be published later, compliant with all relevant security and personal privacy requirements (HIPAA). All medical procedures are in accordance with with the rules and regulations approved by the International Cellular Medicine Society (ICMS), the world-wide oversight body for therapeutic transplantation of stem cells. Particular biases will be disclosed. The researchers have no financial interests in CCSVI Clinic.For more information please visit http://www.ccsviclinic.ca/?p=978

  11. Nicole,

    Thanks. You're right - the consistently positive mind set is healthy, but difficult to maintain. Sharing really helps, but I still hate for anyone to see a chink in my armor - it has taken so long to cultivate this image of strength and stability amidst the turmoil of a progressive disease. Supportive wife, brother, friends all tell me, "don't be so hard on yourself." Nicole, stay positive, but you have my permission to fall off that wagon occasionally.

  12. Thanks. I'm going to hold you to that one!

  13. I think it's hard to not be a little pessimistic sometimes. I'm still in my first year of diagnosis, and like you, just when I think I've gotten ahold of my emotions MS rears its ugly head and I'm left angry and confused. Normally a happy-go-lucky person, this is a hard mind-set for me to accept--but I do. I allow myself to wallow in my unhappiness for a little while, then I force myself to look at every good thing in my life. I guess what I'm trying to say is tough love can be your best friend...but so can pain. You never truly appreciate the good things until bad things come along. :)

  14. I think it's hard to not be a little pessimistic sometimes. I'm still in my first year of diagnosis, and like you, just when I think I've gotten ahold of my emotions MS rears its ugly head and I'm left angry and confused. Normally a happy-go-lucky person, this is a hard mind-set for me to accept--but I do. I allow myself to wallow in my unhappiness for a little while, then I force myself to look at every good thing in my life. I guess what I'm trying to say is tough love can be your best friend...but so can pain. You never truly appreciate the good things until bad things come along. :)

  15. I think it's hard to not be a little pessimistic sometimes. I'm still in my first year of diagnosis, and like you, just when I think I've gotten ahold of my emotions MS rears its ugly head and I'm left angry and confused. Normally a happy-go-lucky person, this is a hard mind-set for me to accept--but I do. I allow myself to wallow in my unhappiness for a little while, then I force myself to look at every good thing in my life. I guess what I'm trying to say is tough love can be your best friend...but so can pain. You never truly appreciate the good things until bad things come along. :)

  16. I too think that it's hard not to be pessimistic. I too am in my first year of diagnosis. I think for the most part I am very positive and up beat person, but like many people with MS I too get angry and frustrated with the limitations that it causes.

  17. I agree as well! I've been diagnosed for four (wow) years now. I think its ok to allow your self to be angry, or feel the frustration, resentment, sadness, fear. Feel it, let it all out...then try to push past it and go forward. I personally am really stressed out about the THREE overflowing Sharps containers in the corner of my bedroom that I need to dispose of...or..the huge styrofoam box that shows up at my door every month!! I hate styrofoam...the thing is bigger than a trash bag. Today I had enough...I grabbed that white squeaky box...I pretended in my mind that the container WAS my MS...and I ripped it to pieces!!! There are white styrofoam "snowflakes" all over my kitchen, but it was worth it!