hsct-multiple-sclerosis-stem-cell-treatment

HSCT Multiple Sclerosis Stem Cell treatment

On Sunday night Oct 23rd 2016, the Australian 60 minutes program aired a story about the “Breakthrough” HSCT Multiple Sclerosis stem cell treatment (Haematopoietic Stem Cell Transplant).  Featured was MS trailblazer Kristy Cruise. In 2013 Kristy flew to Moscow and played “Russian Roulette” undergoing HSCT treatment.  Her experience has been a documented success!

If you are yet to see the 60 minutes story, here’s a link to the episode:

 

(PLUS: see Daily Mail link to look back on Kristy’s journey with HSCT, worth the read and watch)

As a person diagnosed with relapsing remitting MS I like to keep an eye on new developments in treatment options.  I  gravitate towards stories of inspiration, healing and wellness. To see that almost three years on Kristy and countless others are doing well after HSCT Multiple Sclerosis Stem Cell treatment is delightful.

To summarise what was briefly touched upon in the seven minute long 60 minutes episode;

  • 60 Minutes demonstrated reluctance to use the “c” word Cure (and rightly so!)
  • Many who have undergone HSCT have experienced regaining mobility or even sight
  • HSCT has shown in many to halt rapid progression of the disease
  • Footage of Kristy pre HSCT struggling with debilitating fatigue. Fatigue that would keep her couch bound for days and requiring a wheelchair.
  • 6 months after Kristy’s HSCT procedure she is out jogging and exercising again (AWESOME!)
  • Ian Callahan, diagnosed at 31 shares a little of his journey with HSCT. Ian, a father of three, was an active, fit policeman prior to being diagnosed with MS.  He bravely went to Singapore for AHSCT and is not looking back!

    The Pain Point of the Story

  • MS “sufferers”, (a label I’m not a fan of), are told to endure 2 to 3 years trialling other drug options first. This is the current criteria outlined in Australia to be considered a candidate for HSCT treatment here.
  • Hundreds of Australian’s have taken it upon themselves to head overseas for treatment because of not wanting to wait for MS to progress as they wait for Australia to move HSCT Multiple Sclerosis Stem Cell treatment out of the “Deemed Experimental” category.
  • HSCT has been used for over 4 decades for cancer patients (making it not such an old, un-tested treatment)
  • Kristy Cruise demonstrates with clear experiential evidence that HSCT helps most people with MS who have had this treatment, improve their quality of life.
  • HSCT Multiple Sclerosis Stem Cell treatment doesn’t work for everyone with MS (**NB the 2% unsuccessful rate and links in the footnotes)
  • KEY POINT AND PURPOSE TO RAISE AWARENESS: HSCT being available in Australia would take a lot of the stress out of the picture. It would allow patients to be close to their support networks, their family, their home not only during the procedure but for their recovery – to heal.

When stories like this air on T.V. what happens?

Our well meaning family and friends rally to make sure their loved one with MS knows there’s “A New Cure for MS, watch 60 minutes tonight!”…

It was ALL over Facebook which is why I chose to break my media ban to tune in.

Some of us decide to automatically make a judgement call it will be a load of “BS” before we’ve even seen it. (I note) Many find themselves closed off because of past experience with similar hyped up news stories. These people actually miss seeing the true purpose behind people like Kristy, Ian and other trailblazers for HSCT. People putting themselves out there to raise awareness.

SEE how MSRA responded in light of the 60 minutes story.

This 60 minutes MS Breakthrough Story is actually a well done seven minute piece of journalism. The message is clear:

HSCT Multiple Sclerosis Stem Cell treatment – We want it to be an accessible treatment option in Australia!

It is a CALL TO ACTION for people with MS to stand up for our first world rights. Germany, Russia, Singapore, the USA advocate and provide specialised haematology units to provide HSCT Multiple Sclerosis Stem Cell treatment units.

Right now, Australian’s diagnosed with MS are being told to trial drug therapies for 2 to 3 years, which have numerous known and unknown side effects and a big question mark as to if they really will work.

Yes, risk is associated with ALL options.  People with MS know this and live with the uncertainty and unknown daily.  Hearing the reports of death and PML. We care about our lives, taking responsibility to be informed where and how we can.

What can we do as people diagnosed with MS?

The way I see it, we can be supporting the MS trailblazers by consciously doing our homework with respect to how alternative MS treatments work.

  • First of all take personal responsibility to know about MS treatment options,
  • Choose to question,
  • Demonstrate this knowledge to your chosen medical physician/s.

Being diagnosed with MS you have rights to better health outcomes. Guinea pigs we are not!  Playing the game of “wait and see” is not the way we want to fight our diagnosis!!

The current option for HSCT is to go overseas, leave our families, our support network and go through what can be a frightening experience with life or death risks associated, right?.  Alternatively, wouldn’t it be better to avoid the unnecessarily stressful experience for patients and their families. Emotionally, Physically, Financially and Spiritually.

The more people diagnosed with MS who can find the courage to stand up and demonstrate our knowledge, our desire, the facts in favour, I believe – the greater the potential to create the shift and the change! Power to the people!!

How do we get the education?

Explore the various support groups who have hands-on and experiential knowledge to the specific treatment options you may be considering.  You will meet real people who have taken the plunge, already done their homework, have gone through the process and are happy to share their knowledge and experience.  Going to the source is the best!

I’ve found closed Facebook Groups, moderated by an admin/s who acts to ensure a positive experience is a good option. Moving Mountains To Defeat MS is Kristy Cruise’s group which is really going direct to the source!

Suggested Go To Links for Australian HSCT and Education on MS Treatment Options

The people over at MSRA are in the know.  My only grievance is the stand out alliance with pharmaceutical sponsors.  Personally a pet peeve of mine. SEE the various MRSA links below for more info:

 Autologous Haematopoietic Stem Cell Transplant for Multiple Sclerosis Background and progress in research – see PDF

Media Reports about Autologous Haematopoietic Stem Cell Transplant (PDF)

MS Research Australia explains AHSCT Multiple Sclerosis Stem Cell Treatment

The OMS book is a treasure of a resource written by Professor George Jelinek, you will find an un-biased review on every known treatment option for MS to date.  I found it confronting when newly diagnosed, years down the track I regret I didn’t read it sooner.

OMS Book: Your Guide to Recovery

Blogging Authentically My Way

I’ve cracked it the past week because all I’ve wanted to do was write my blog – blogging authentically MY WAY!  In my head there’s the voice that looks over at the YOAST suggestions all the time telling me my readability stinks, that I’m not using my keywords enough.  I honestly think it is like a doubter or an ego voice who wants to will me or spook me to fail!

THE COMPUTER DOESN’T UNDERSTAND ME!

Rather than just writing whats on my heart and mind.  Instead of deciding that it doesn’t matter what SEO says, or if people will even find my blog when they type in my keywords to search.  Or even if some spammy troll person will come and post a comment to this post wanting to help me with my SEO!! Arrrrgh!! I just want to swear right now!! Why the **BLEEP** don’t I just write what I want to bloody well write here!!

Does anyone else reading this blog feel my pain? If you too write a blog, do you have one of those “helpers” on your blog that has you doubt your worthy content or ability to write and express your english words? Is it stopping you creating content like is stops me?

What is Blogging Authentically MY Way Anyway?

I don’t even believe I’ve truly established my voice yet with this blogging thing.  I have too many voices in my head scattering my vision.  One thing for certain is that I want to inspire people to find their way to do what they love and do it without fear.  Fear of judgement, stigma, sleepless nights or trolls who want to stomp on their authentic parade.  To find a way to live their most authentic life, to create a living doing that, and be sovereign.

There is so much stuff out there that has the power to take away our individual power – just like the tools I’m using to write my blog that tell me my readability stinks.  So many people offering ways to help you do this better or that better.  Even I’M one of those people promoting ways to fix your thinking, change your life!! HA HA HA!!

WHY WE’VE GOT TO BECOME OPPORTUNITY FILTERS

With all the offerings out there, it is a necessity to become guardians of our time and our headspace.  To develop the skill of becoming an opportunity filter so we don’t get caught up in all the unnecessary time-wasting “stuff” that passes our newsfeed.  Pretty much like this blog is right now – I am grateful you are here reading this though.

MASTER CLASS Why?Why?

Because I have made a personal art of clicking on and subscribing to all these opportunities to guide me to

  • blog better
  • market better
  • attract my tribe better
  • be authentically better

I’ve also paid attention waaaay too much to the SEO / keyword advice and instead of writing a blog and just sharing it, I’ve spent hours writing a blog to not ever share it and to give up writing another blog for weeks and weeks AND WEEKS!! ALL because some computer thinks people / Google can’t read it easily enough!

It’s kind of similar to when you log in to Facebook to make a few quick posts and one hour later you’ve watched three videos and shared four quotes about being positive!

I’ll let the people be the judge. SO if you think my blogging authentically my way stinks or is good, let me know with a comment.  Thanks.

Really going after it, no matter what

There comes a time in life or a moment of inspiration when a person decides they’re really going after it, no matter what.  I guess that is where I see myself right now and when I look back to all the times in my life that I can be proud, it would be when I had this attitude.

Really going after it, no matter what takes desire, commitment, a clear picture vision of what it is you truly want to achieve.

To see it, feel it, taste it, imagine yourself in the picture like it is real.  This is the secret magic to manifesting your desire.  

To set your intention with the clear picture.  To work out what steps it will take and to really go after it, no matter what.  

Just writing this sends a vibration through me, an excitement.

THIS is where you want to be with your goal, so energised to just get busy and get into action with it.

really going after it, no matter what

This year I set myself a goal to blog more.  I wanted to blog weekly and although my consistency with this has missed target thus far, I am still really going after it, no matter what.

Why?  Simply because I see each day and each week as a new opportunity to do better.  

I can hit the reset button anytime I like and today, no matter what, I’m declaring to really go after my blog goal like I have other goals in the past.  Just because I didn’t blog every week since the beginning of the year, I can decide and act to hit this goal every week from today moving forward.  

Maybe the picture I had for this goal was not strong enough until now.  

SO, what I’ve done is sat back, given the space to look at where my heart and priorities are and am setting a stronger picture with this one goal in particular.  I can see the value in this activity, the way it raises my vibration and the potential it has to grow my other goals just for the power writing gives me.

How can I stay on track… Keep in the zone… allow the consistency to kick in?

  • I make a plan,
  • set a post schedule,
  • allow for impromptu inspiration to hit me and write when the motivation hits rather than put it off.  
  • Make writing a high priority for me.  
  • Let it inspire and excite me.  
  • Let it feed my soul.  
  • BE the blogger, the writer, the creator my higher self dreams me to be.  

Stop wishing and dreaming and just start doing.  

Turn off the distractions and just get busy writing, and writing and writing some more!

DO WHAT YOU LOVE

I’ll aim to keep the motivation activated by using the goal to collaborate and integrate with other things important to me.

Things like my social media where I aim to inspire others and have aligned goals to be more of a creator of my own authentic content rather than piggy backing on everyone else’s.

I’ll make a point to remind myself of the other higher purpose to my goal being to continue to build a tribe of my own, to attract people to my content that look forward to reading what I have to say each week.  By sticking with my goal, my picture, really going after it, no matter what then I’m bound to have some success here.

What are you really going after, no matter what?

Share with me your goal/s in the comments below. Together we can shine and achieve.  Maybe you have your own strategy or want to share when and how you went after something, no matter what and found great success!!

I know for sure I’m here blogging for the long haul – no matter what! 😉

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MS Diagnosis – Adjusting to life with MS

When I look back to when I was first diagnosed with MS from where I am today, I can see that adjusting to MS diagnosis was quite an ordeal. Despite my gratitude for not having a tumour on my spine, there was still much shock and anguish to go through.

 

I remember on this long weekend to Lorne, I was not feeling all that right? Remember putting down to allergies as Spring was coming early. Little did I know what was to come in a few months time...
I remember on this long weekend to Lorne, I was not feeling all that right? Remember putting down to allergies as Spring was coming early. Little did I know what was to come in a few months time…

The MS Diagnosis wave of emotions

My first initial emotion was relief and celebration that I was not dealing with cancer and a fight for my life. Then, the reality sets in and you feel that wave of change hit you.  All the research you’ve been doing about what a diagnosis with MS means. Disability and not being able to physically do things for yourself becomes a major consideration.

I found myself sobbing when I’d lie down to go to sleep.  My legs were numb and tingly, my mind focused on where I’d been told my lesions were on my spine and in my brain.  Where could this tingling go? Does it mean I may lose the ability to walk one day?  Will I not be able to drive?  Am I going to wet myself and need to wear adult nappies when my incontinence kicks in?  Will I be able to have kids and be able to play with them? Am I going to lose my independence.  ALL the worst case scenario’s play out.

At my time of MS diagnosis, I was a newly wed and I loved to travel.  In my mind I’d had plans to have a baby in the not too distant future but now I was a little scared.  I could see that others with MS had kids.  Many seemed to have had them before they knew or at the time of diagnosis. But how will I go?  I had suffered a lot with Depression and Anxiety over the years and knowing MS may be a major contributor to this, it did concern me to be a parent with MS.  That I would be more susceptible to depression because I have been in dark places before.

Deciding on my treatment options

After taking home the leaflets from my first neurologist appointment, the biggest priority on my mind was being able to have a baby.  I was 32 and my biological clock was ticking.  At the time I had a choice of three injectable therapies Avonex, Rebif Betaferon and Copaxone.  I was completely swayed to Copaxone for it was sold to me as the safest option if I were to fall pregnant.  The biggest drawback was it was a daily injection which meant I was to inject myself everyday for the rest of my life (although, not while pregnant).

I started my daily injections of Copaxone in January 2008.  I remember the nurse coming around on a hot summers day with the blue bag of goodies.

  • My auto injector contraption,
  • my round, coloured magnetic alarm for the fridge to remind me of the time to inject (looked like something from a Mattel game),
  • my instructions with a map of the body pointing to all the places I needed to rotate my injections.  (You get sore welts as the injection is subcutaneous, just under the skin so it is like a largish mozzie bite or hive irritation)
  • My cool/heat pack to use cold from the refrigerator post injection to relieve the heat and stinging feeling. I’d sit for 15 minutes every morning with this, 7 days a week
  • sponges to show me how to manually inject without the auto inject (which I opted out of learning/trying at this time as I was already freaking out about self injecting)

In the early weeks of MS Diagnosis I learned how to give myself a daily jab of Copaxone.  I cannot remember what part of my body I injected first but do remember my muscly thigh hurt way too much, so only went there once or twice.  My husband Craig would jab me in the buttocks many a morning.  I was capable of jabbing my upper arm resting on a chair back but did have a couple of times after injecting my upper arm, where I got the nasty reaction – my heart palpitated and I had to lie down from the head spin rush for 25 minutes or so which was scary.  My favourite spot was my tummy.  That was, until a few years down the track I successfully managed to lose some significant weight and there was less body fat.  Too much scarring and not enough rotation gave me troubles.  This was a main reason for my ceasing with Copaxone a few years later.

Physical fitness after my MS Diagnosis

My mind filled with limitations from all the information I was reading about MS and heat, exercise, fatigue, spasticity… it was driving me to adjust my workout routine.  I opted to take an eight week meditation course and changed my routine from high impact Body Attack classes to Pilates.  I scaled down my exercise routine to lower impact and intensity, particularly when it came to cardio and breaking out in a heat sweat. I quit the boxing and carrying heavy weights up and down stairs in Personal Training sessions.  I began a process of thinking my life, the fitness regime and my newly improved physical body at time of MS diagnosis was to be a reality of the past.  My physical fitness future was to be low impact, mellow, subdued…

Deciding to Change Jobs

MS diagnosis also brought about changes in my career.  I was working as a Member Care Manager at a local Fitness Club.  Given my exercise routine was changing I was feeling grief about it.  It was mentally and emotionally bothering me to see others doing what was being torn away from me.  I also found frustration and stress when others who could workout high impact, people who had no physical excuse to quit physical fitness, would come to me and quit.  Memories of other members who had left in the past via my office door because their MS was taking a physical toll were hitting close to home for me. Mentally and emotionally, while I was doing my best to put on a brave, positive face with my MS diagnosis, I didn’t want to be in that environment anymore.  I was hurting.  So I changed jobs for something out of the industry and much more sedentary.  I went to work in Customer Service at Toyota.  Was less of a stress and had completely nothing to do with health and wellness.  Little did I know, my full circle would come later and I’d be advocating and comfortable with a health and wellness role again with my own business!

Committing to do the Melbourne

MS Walk Every Year

One thing I decided to do was to attend and fundraise for the Melbourne MS Walk and MS Australia every June.  They did so much in those early days of diagnosis to educate me.  They assisted me via their toll free, volunteer help line in those dark moments where I was most vulnerable.  I cannot tell you how many times I sobbed down the phone line to them in my first few years after MS Diagnosis.  Things can seem pretty bleak, overwhelming and I don’t know about you, but I have had moments of extreme self-pity lows.  Depression and anxiety have had strong holds with me over the years and if it weren’t for others at MS Australia on the other end of the line talking me through and out I don’t know…

 

2009 was my second year after MS Diagnosis and we walked with an official team called MS Glitter Bugs. I was also interviewed by our local paper to raise awareness
2009 was my second year after MS Diagnosis and we walked with an official team called MS Glitter Bugs. I was also interviewed by our local paper to raise awareness

 

My whole family would get involved in the MS Walk early years.  Some years I opted to just go with Craig and our daughter.  I do remember the first couple to be emotional as I walked observing others like me or more progressive.  It was an un-subtle reminder of what life may or may not have in store for me.  My legs would get heavy and I would feel tired.  Sometimes I’d feel like going off on my own for a little cry to myself.  2010, my first with my daughter we discovered CCSVI at the MS Walk (this is for another blog post)  It helped having people around me being so supportive, so very grateful for it.  The MS Walk was one MS-focused event I was ok to be involved.  That and the Wellness Day I attended have been positives… for me, going to peer support meet ups left me deflated rather than empowered.  I personally prefer to stay away from these events and live in my own bubble of reality with my MS.

And so, the early adjustments for me focused around what course of treatment action I would take, lifestyle and exercise, my career and work situation and getting involved in some way with MS – as positive a way as I could.  

 SEE my first MS post MS Diagnosis Journey – When your legs go numb

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