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Donna’s Story

The WAMS Foundation needs your help!!! Our recipient this year is Donna Glen, please check out her story below, or donate here.

Hello my name is Donna Glen. I turned 69 last month and have been dealing with MS for 34 years.

In the beginning symptoms were vague and doctors were puzzled. My husband and I were busy raising our 3 young children and I had a part time job. Life was good! In August 1986 I was ill enough to be hospitalized which resulted in a probable diagnosis of MS. I had an elder sister who had been previously diagnosed with MS so I knew it could happen. An MRI several years later showed brain plaques and confirmed my MS diagnosis.

Our lives changed! The kids were 15, 13 and 11. We really discovered what being a family meant. Everyone stepped up and pitched in.

Fatigue and brain fog were constant companions. Eye sight and mobility were compromised. Even getting out of bed was a task. Muscle spasms were nasty. Medication helped but made the mental confusion worse. Cold hands and feet were common and I couldn’t walk bare footed or unassisted. I was very sensitive to cold or heat.

In January 2011 I had CCSVI treatment and was very pleased with the results. My balance was better, my walking improved, and I had more energy. My speech was no longer slurred, swallowing was easier, and the brain fog lifted. The muscle spasms were lessened and I was able to stop taking medication for them. Sleep was also better.

The last few years I am again having trouble with my balance and walking, especially on my right side. My right foot drop is pronounced and the left is getting slower. I now require a walker to get around safely. Walking without my walker can be very interesting. Can anyone say unexpected side trip – “Hello, wall!” Fatigue is once again very present. Muscle spasms are slowly but surely returning. Holding the same position for any length of time causes my muscles lock up. This makes travelling to Alberta to visit my children and grandchildren challenging at best an impossible at worst.

One of the ways I manage my MS is working around a significant number of food sensitivities. This requires me to make a lot of my own food. When I am preparing my food I know the consistency required for swallowing and it has become second nature to prepare it to that consistency. However, I sometimes get an unpleasant shock when dining out. Three years ago I had flare of the Trigeminal nerve that was extremely painful, both from any contact to cheek or eating. Rest and use of a Tens unit helped and I was able to eat. I eventually became pain free.

Living a normal life style is a challenge when things change daily. Every day is very different; I have learned to do what I can when I can do it and not to worry about the rest. I know staying active is important so I do Aqua fit weekly and ride my exercise bike daily and do lots of stretches.

One of my favourite past times is gardening. Over the last few years I have found it harder and harder to keep up with my yard. I have had to cut my vegetable and flower beds back because I just cannot maintain them. Giving up one of my oldest and most loved hobbies has been very difficult.

Two of the biggest enemies to MS are infections and stress. Grief is a stressor. My elder sister fought her battle with MS bravely and well. We lost her to complications of MS in January of 2014. My mother had been in failing health for several years and passed away in October of this year. My faith comforts me tremendously. I do my best to walk through each day and take things one moment at a time.
My grandson has an immune deficiency called Chronic Granulomatous Disease. The only cure is a bone marrow transplant. He is scheduled to have a transplant in spring of 2018 and the National Insitutes of Health (NIH). I would love to be well enough to help look after my granddaughter while my daughter and son-in-law are away from home for his transplant.

The hope of getting another CCSVI or Stem Cell treatment is very encouraging because the days of being able or unable to cope are getting closer together. We estimate the cost of treatment to be around $20,000.00 to $22,000.00 Canadian.

Please donate.

Shaneel’s Story

ShaneelShaneel is a wife, daughter and sister who has been living with Multiple Sclerosis for 12 years. She was diagnosed in 2005, just 6 days before her 25th birthday. At the time she had her full independence working full time in the financial field with aspirations of climbing the corporate ladder.

Her initial symptoms that led her to visit the doctor was a combination of unusual feelings which included numbness and tingling in her fingers along with a lack of balance and daily fatigue. Just days after her visit to the doctor and MRI tests, the results had proven that Shaneel has Multiple Sclerosis. This was just the beginning of the journey she was about to be faced with.

Weeks, and months followed in which Shaneel and her family visited numerous doctors and began recommended treatments and medical regimes.

As years followed her MS was moving at a fairly rapid pace. It was the start of the most difficult part of her journey, which had left Shaneel dependent on her loved one’s. Losing her mobility led to the inability to work. In addition, she is constantly fatigued, has eye ataxia (lack of muscle coordination), blurred vision, tremors and poor coordination in hands, drop foot, bladder issues and trouble sleeping.

Shaneel crossed a difficult road in her journey in 2013 when she had a severe MS attack. At this time, she developed Cerebellar ataxia, which causes her head to shake. All other symptoms drastically increased from the attack. Moving forward, Shaneel has since required a wheelchair.

She is now undergoing treatments in the hopes to be living the independent life she knows and deserves. To date, she has undergone CCSVI (angioplasty), Stem Cell therapy, IV therapies, Ozone therapies, bio magnetic therapy, lymphatic magnetic oxygen therapies, hyperbaric oxygen therapies and Jugular Vein Bypass Surgery (neck veins). There have been some improvements with her sleep and bladder control. This is just a glimmer of light at the end of the tunnel which she fights to move towards, daily.

Wams 5th Annual MS Fundraiser

Click Here For Details On Our Fundraising Event!

Fundraiser: June 24, 2016

The Walk A Myelin Our Shoes Foundation (WAMS) is hosting a fundraiser on June 24th at 6:00pm at the Buck and Ear Pub in Richmond.

We hadn’t planned on a fundraiser this spring but when we heard Shaneel’s story we had to help.

Her story hits especially close to home as I attended high school with Shaneel.   Shaneel was diagnosed with MS around the same time as me but she has difficulty walking, requires assistance feeding herself and has difficulty speaking, Shaneel requires 24 hour care and she is only 36 years old. She is hoping to receive a series of treatments in Mexico which includes stem cell therapy and CCSVI, but the cost of these treatments is $250,000.

Every dollar raised on June 24th will go directly to Shaneel.

 

Please support and purchase tickets to attend the fundraiser here:https://www.eventbrite.ca/e/wams-fundraiser-for-shaneel-tickets-25624318025

 

If you cannot attend please consider donating to Shaneel’s very worthy cause. There are “ghost tickets” and “donation” tickets available though the link provided above. Or alternatively you can donate directly to our website

 

Here is a short video on Shaneel to give you an idea of her daily struggles. Let’s rally everyone we can to get Shaneel the help she deserves! Please support and share with everyone you know!

https://www.facebook.com/shaneel3/videos/10153465572141962/

 

4th annual WAMS Fundraiser: Oct 3, 2014

WAMS_2014_Email_Small

The time has come! Tickets are now on sale for the 4th annual WAMS Fundraiser!

Follow the link below and get yours now! https://www.eventbrite.ca/e/wams-4th-annual-fundraiser-tickets-12781031409

Hosted by the Fabulous Joan-E!!! With very special guests:

  • Conni Smudge
  • Vera Way
  • Peach Cobblah
  • Eva LeGore
  • Isolde N. Baron
  • Sharri Muttart
  • Chris Lam
  • Carmen deFoy

Show starts at 8:30pm

Doors at 7pm

Last call 12:30am

Sponsored by: Petite Pearl Events and Open Road Auto Body

3rd annual fundraiser

3rd Annual Fundraiser May 24th

May 24th, 2013, Doors at 6pm – Be there on time as there is a limited capacity!
Tickets : $20
Hosted by: Joan-E
Featuring: Pussy Willow, Carlotta Gurl, Eva Le Gore, Sharri Muttart, Coco and Conni Smudge
TICKETS ONLY VALID UNTIL 9PM
Enjoy a fabulous night for a fabulous cause. Jello shooters, raffle,silent auction, 50/50 and some incredible talent!!!
Your ticket will also allow you to stay and dance the night away at the hottest club in town after the WAMS festivities are over!
3rd annual fundraiser

 

Introducing Danielle, one of our Recipients for our Second Annual Fundraiser!

Hello my name is Danielle, and I am 32 years old. In 2008 I officially received
the news that I did in fact have multiple sclerosis. This was news I had been trying to avoid for a couple of years already, and hearing the confirmation was devastating. Regardless of how far or how fast I ran, this mad monster of a disease had managed to catch up to me.

Prior to my diagnosis I had been in the process of building my future and career in Real Estate Sales while living in the Okanagan Valley. Despite the work that I put into my life, it turned out that my body had other plans for me. The harder I worked in my career, the harder the stress of my job worked against me and my body. Slowly I began noticing different deficits in myself and my abilities. Suspiciously I wrote the occurrences off as coincidences caused by other events in my life. In 2006, on the advice and insistence of my doctors I walked away from the life I had been working hard to build and so dearly loved despite the effects it was having on my overall well being. I was told that if I wanted to be able to walk in the future I needed to pay attention to my health, despite that attention bringing up difficult decisions at that current moment; it would help me out in the long run. Weighing my options at that time that is what I took the advice and literally ran with it; choosing to leave without looking back. I gave little to no reason for my departure to those in my life at the time because I knew that if I had to explain why I was doing what I was doing I would not of maintained the ability to hold onto my choice to leave everything behind.

Daily I battle with the constant reminders of my condition. The extreme fatigue, severe mobility issues, and pain; with my pain averaging 10.5 out of 10.Most often my body feels as though it is wrapped in a nylon body suit that is too tight for me; having these difficulties in my life is very frustrating. I have managed to deal with them, and mask them to the best of my ability. Both to myself and everyone around me. This monster really does teach you the game of self preservation! Having said all this by no means have I allowed any of this get in my way and stop me from creating new goals in my life and moving forward. Despite the barriers living with MS has put in my way I explored new ideas and passions and began pursuing further education. I have also had the wonderful support from friends, both new and old who helped strengthen me to better accept my condition and the reality of it.

I am now in my 3rd year of my Bachelor of Social Work Degree. I love this new path and am excited by the fact that at the end I will be able to positively affect the lives of individuals in our community. This path has also put me in touch with myself and allowed me to open up when thinking of living with MS. It has also opened me up to connecting with new networks of people within the MS community.

I’ve had the honor to find out about the WAMS Foundation just this past year when they offered their support and assistance to my girlfriend Michele. Michele, who was the 1st recipient of the WAMS Foundation, suffered a major relapse at that time which truly frightened me with the reality of this disease. Seeing her going from being fit for a wheel chair to dancing in heels at her wedding three months later after receiving treatment with the support of WAMS removed the doubts I had when I first heard about the CCSVI Treatment. It also made me start to consider seeking the treatment. If I could get any relief from some of my symptoms. I would consider the treatment a success.

After much internal debate about asking for help I finally contacted the WAMS Foundation earlier this year. I was humbled and relieved to hear that they were willing to assist me in my CCSVI journey. As I am currently a full-time student on student loans the ability to pursue this costly treatment on my own would be many years away. As we know when you are dealing and struggling with MS time is of the essence and everyday matters when working towards maintaining abilities and mobility.

I thank you all for taking the time to learn about me and any support you may be able to offer. I also thank the WAMS Foundation for reaching out to help me through this part of my journey.

Sincerely,

Danielle

 

 

 

 

 

 

Introducing Morgan, one of our Recipients for our Second Annual Fundraiser!

Hello I am Morgan, the next recipient for the upcoming WAMS Foundation Fundraiser. I am thirty years old, and am a wife, mother, daughter, niece, cousin and friend. I was diagnosed with Multiple Sclerosis 9 years ago and have found that living with this disease significantly affects my way of life. It prevents me from doing the things that I love chasing after my toddler son, snowshoeing,  crafting, dancing and traveling.

Living with MS fluctuates, and the symptoms can go from barely there to being a complete nuisance and barrier in my life  One of the hardest symptoms for me is the extreme fatigue; I’m not just sleepy but exhausted barley able to think.. It feels like my body doesn’t listen to my directions. Having once been a dancer I had good co-ordination, which is no longer the case. I send out directions to my body and the messages are received slowly if at all. I also feel like I am almost always in some level of pain. On a scale of 1-10 I live in the 3 range most days though recently I’ve had lots of 8 or 9 days. I also experience restless legs; it’s this crazy almost tickle response that causes my legs to jolt and jump for no reason. I often drag one leg when I walk or use a cane for support and balance. Oh and numbness; I almost forgot numbness, it’s like going to the dentist but instead of freezing your mouth he randomly chooses a body part much like a really bad case of pins and needles. I also don’t feel as smart as I once was. It’s as though my mind doesn’t work the way it once did, often feeling that my memory is muddy and my words come out garbled. I say one thing but mean another and I often lose my train of thought mid-sentence.  There are other symptoms that come along with living with MS they have become mostly background noise that I have learned to tune out.

My MS hasn’t been all bad though. I’ve learnt a great deal about myself since being diagnosed with MS. It has brought me too many realizations that I’m not sure I would have reached otherwise. It’s pushed me to new levels of spiritual growth and has taught me compassion; both for myself and others. MS has taught me to take time to enjoy the little things in life; walking slowly provides lots of opportunities to smell the flowers. MS has taught me to deal with issues as they arise, as procrastination only causes more pain in the long run. I have learned to treat my body with kindness and respect; exercise, stretching, relaxation and proper nutrition have really improved my quality of life.

Finding WAMS has been a huge blessing not only because being a recipient has given me hope but I have also found a great deal of support from the people who run the foundation. Thank you so much for supporting WAMS and for supporting me- it means so much to me and my family.

Sincerely,

Morgan

www.devinandmorgan.com

2012 Annual Fundraiser

Join us on March 16th for the WAMS Foundation Variety Show Fundraiser

March 16th
from 7pm-12am
Doors at 7 show starts at 8

Buy Tickets Here
Roundhouse Community Center
181 Roundhouse Mews, VancouverVIP tables are $625 and seat 10 people

Single VIP tickets are $75
VIP tickets are limited so get ‘em quick
General Admission Tickets $40

Hosted By:
Sarah Dawn Pledge, Amy Wilding
and drag queen extraordinaire
Joan E

Featuring:
Acrobatics
Silk Aerialist
Irish Dance Troupe
Burlesque Dancer

There will be a raffle, silent auction and 50/50

Download the brochure here: WAMS Fundraiser.2012.web

Buy Tickets Here

Goal Setting

I have been meaning to write my post for January for some time now, so please excuse the delay; as we’re already at the end of February! My focus for this blog post, as we are now well into the New Year, is resolutions and goal setting.  First, let’s rewind a bit so I can wish everyone a Happy 2012! I hope everyone enjoyed the holiday season. Now, onwards to my thoughts for the New Year!

I am not one to set New Year’s Resolutions, and if you are I commend you, especially if you end up following them! I do however like to set goals, and do my best to work towards them, without beating myself up if I don’t achieve them. When I was first out of the hospital last year my physiotherapist expressed how important it is to write down goals, and try to work away at them. I must admit that during that time my only goal, or more so hope, was to be able to walk and have my pain stop. I did not know how to achieve that at the time, and though I am used to setting goals, I was very overwhelmed by the new hurdle I had to overcome.

This was exacerbated by the fact that thinking coherently and goal setting was seemingly much harder than it had ever been before.  Brain fog often gets the best of us living with MS; and I can say that my memory, writing, and follow through skills were not at their best when I was in relapse mode. However, I didn’t want to give up, even though I was extremely frustrated.

Regardless of living with MS I know many friends that feel lost in life. Don’t we all from time to time? Friends would often try and commiserate with me during these times, trying to make me feel better about the struggles I was faced with, letting me know that they too had problems. While this was appreciated, I feel that – due to their subjective nature – cognitive challenges are so much more of a struggle than people realize.

With this in mind, I worked through various methods to give myself daily motivation and outline my weeks to help feel a sense of accomplishment (gotta love checking things off a list!). I even added a whiteboard to my bathroom to write notes and inspirational quotes. I figured that I frequented the washroom enough that it was a great place to have a reminder that life wasn’t all that bad.

The list of ‘things to do’ lived on the fridge, another place I visit often : ) You get hungry, need a snack and you can re-visit your weekly/daily/monthly list of things to do, food for fodder!

My friend even bought me a huge calendar where I put down doctor’s appointments and other things I had to get done in the month. The best part about that is she bought me a big stack of stickers to give myself gold stars and smiley faces galore! I am a very visual and creative thinker so this was great. Some people even make vision boards, which I think is super cool and would be fun to do!

What I am trying to illustrate to you is that sometimes it takes several methods to sort out your madness; and regardless of how you go about it, setting goals and writing things down really does help, especially when your cog fog rolls in so thick you can barely remember your phone number. Don’t give up trying, that is key. I took a break from things, as it does get hard, but my notes were always there for me to reflect on.

I found this great article on goal setting that I think you should check out:

http://www.mindtools.com/page6.html

It really helps you think about how to start setting goals and working towards them. The MS MonSter is always going to be part of my life, and I know I have to work hard to try and manage not only the medical side of the illness, but also the social and emotional side of things. So far all my chicken scratch notes and lists, as scattered as they may sound, seem to be helping : )

I hope that you check out that link and get some good ideas for setting some goals for 2012!

Happiness and Health to all in 2012,

–       Michele

 

PS: I would love to hear about your ways of goal setting, Please feel free to share : )

Rieki for MS

Reiki and Multiple Sclerosis

Reiki and Multiple Sclerosis

Reiki (pronounced ray-key), means “universal life-force energy” and is a simple, gentle and safe Japanese technique for stress reduction and relaxation that also promotes spiritual, mental and physical well-being and healing. The Reiki Practitioner taps into an unlimited source of universal life force energy and shares this energy with you. You may have noticed that energy healing is becoming more and more popular these days, and with good reason. Energy work can have a profound positive impact on health and vitality.

Reiki for Multiple SclerosisOn a deeper level, regular treatments will help move stagnant energy. Stagnation begins in the body’s outer energy fields, then move inwards toward the physical body. Once the energetic stagnation becomes pronounced within the body, it will start to manifest in physical symptoms. It is generally accepted in the naturopathic community that stagnation causes disease. The practice of Reiki is the art and science of channeling energy to move stagnation and promote healing.

The existence of the universal life force energy has been documented by recent scientific experiments, and medical doctors are considering the role it may play in the functioning of the immune system and the healing process. Several studies have been conducted on the effect of Reiki on Multiple Scleroris. While these studies are relatively new, several have indicated promising results in terms of pain reduction, increased energy levels, less fatigue, improvement in well-being and a reduction in depression and stress response. A new clinical trial to further study the effects of Reiki on MS is currently being proposed by a group of Reiki practitioners working in conjunction with a neurologist from the University of British Columbia. While further studies need to be conducted in order to reach definitive conclusions, so far the results are encouraging.

Reiki is being introduced in an increasing number of hospitals throughout Canada and is acknowledged by many allopathic doctors as having value in complementing traditional disease treatment methods. In the US, Reiki is used as a standard part of care in many hospitals.

Since stress worsens MS, Reiki can be extremely beneficial because it is very calming, grounding and relaxing. Not only is it beneficial for MS patients to receive Reiki treatments, but if an MS patient learns Reiki and receives the attunements, they will then be able to channel this powerful healing energy themselves for self-treatment. Treating oneself can as effective as being treated by another practitioner. It is a tool that can be used anytime, anywhere and as often as it is needed.

Reiki is not a substitute for medical treatment, but it can be used as a powerful complement to traditional medicine. In fact, it may improve the effectiveness of all other treatments, and reduce negative side effects and complications from medications and surgeries. It works to shorten healing time, reduce or eliminate pain, reduce stress, promote relaxation and create optimism.

Kira Lynne, BA, RHN, is a Reiki Master/Teacher and Registered Holistic Nutritionist practicing in Vancouver, BC.

For further details on the studies mentioned in this article, please see the following:

Reiki and MS Study http://therapeuticreiki.com/blog/reiki-ms/

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