Tuesday, October 13, 2015

3 Powerful Words: Align, Lengthen and Strengthen



So you have been diagnosed with ALS! 
Don't lay down and quit. As Dagmar Munn in her book, talks about,Get Going and 'Align, Lengthen and Strengthen'.
Get up, go forward and do all you can to have an awesome life. Not next year but starting today!
I've included the link to her free book at the end of this post. In addition, for those who don't know what the formal definition of ALS is, I've included that as well. 

Does the word, 'ALS' make you cringe, want to deny or ignore. Stop it! Get over it and Show up to life each day!

If you don't have ALS, know someone who does or just don't know what it is...educate yourself. One thing those with ALS need as well as family and friends is someone with a heart and ears to listen non-judgemental. By non-judgemental I mean, get out of your box and really care. Get past what you don't know!
If your ill you would want someone to listen, care and walk through with you! If you don't have people around you who do so then change the game. Be the person you would like others to be to you.

Build a new foundation of your house/life and go for all the gusto you can no matter what stage of ALS  your in, your a caregiver, friend or just want to be a support person for others.

Now show up, get out, surround yourself with people who are positive and develop a powerful sense of humor. Laughter is a powerful medicine.

Now most of all go read Dagmar's book, 'Align, Lengthen and Strengthen'

See you next time!
Cynthia

 
 “Amyotrophic Lateral Sclerosis” known as ALS or Lou Gehrig Disease
A progressive condition that affects the nerve cells in the brain and spinal cord responsible for movement. The disease causes loss of muscle function – including the muscles used for speech, swallowing and breathing – and leads to a full body paralysis that eventually progresses to death. In contrast however, the mind and body’s senses remain fully functional to the end.

Sunday, September 13, 2015

Acts of Kindness Because of Chris Rosati

Chris Rosati started something with his gift to two girls. The only thing he asked is to do something kind. Chris lives with and in spite of ALS and his voice is almost gone but he isn't stopped from doing good. He lives to make kindness contagious. He wanted to see if the butterfly effect would work with acts of kindness. The butterfly effect is a butterfly flapping it's wings can start a hurricane on the other side of the world, A physics theory. He continues to give out 'butterfly grants' and kindness continues to spread in young people doing good things to help others. All because of Chris believes we can make a difference in lives of others. Watch the videos below and if you'd like to see more about Chris Rosati and what he's been up to, go to youtube and search, 'Chris Rosati'.


 
 #chris rosati #als #acts of kindness stories #acts of kindness #videos #youtube #contagious kindness #kindness is contagious #pass it on #random acts of kindness #1000 donut give away

Thursday, July 16, 2015

ALS: Dandy Oskey: Amazing Supplement Trial: Stay Strong, A Cure is Near




Supplement Trial: My thoughts after 90 days on the supplement
I was asked by Jason David College to share this post as a follow-up to my previous Supplement Trial post. I’ve been on my supplement for over 90 days and I want to let you know some of my thoughts.
1. Since beginning this trial, I honestly believe that my ALS symptoms have not progressed. Upon starting this trial, I stopped taking Rilutek and I take no other medication for pain or ailment.
2. I have seen positive changes in my ability to contract muscles in my legs (not done in 2 years) , as well as lift my right arm and have strength to perform simple tasks.
3. Many recent studies have been conducted on various nutritional treatments for chronic disease. This confirms what I am finding through my personal experiences within my trial. I really believe that epigenetic science and super foods are a valid treatment for disease. With the corruption of our food system, the use of pesticides, and our inability to give our bodies what they need, chronic diseases are sure to follow.
4. I have seen no ill affects from taking this supplement. I do find that I get less hungry for regular food, but I still eat regular meals. My weight seems to be staying consistent and I feel good most of the time.
5. I believe that even though I see slight improvements, most of my benefit has been from slowing the progression, if not stopping it. When saying this, it is hard to quantify it, but I know how I feel. I do know that today I am able to do things that I was unable to do 90 days ago, or were previously very difficult for me. For example:
a) When I used to eat, my wife would lift my arm up and my wrist did not have any strength to lift the food to my mouth, or even hold it up. Yesterday at the Jurassic World movie, I lifted almost an entire box of Junior Mints (one at a time) to my mouth. Boy they were good!
b) I have had multiple people visit from out of town who have told me that I am better today than the last time they saw me.
c) I was not not able to roll up my headset ear piece, or put the ear piece in since getting the headset. Lately I have had enough hand strength to do both things.
d) Since getting my iPhone 6 I have been unable to lift it. Now (as of the past month) I am able to lift it.

6. With the results that I have seen, I would be very reluctant to stop taking the supplement.
In closing, I wish that I would have known about this supplement back in 2009 when my symptoms first started. I feel that I might not even be in a wheel chair right now, had I known. If you haven’t kept up with my trial, go to my YouTube channel to see all my previous videos: https://www.youtube.com/channel/UCfawMSJWTpKxJJGE2cv973g
I started this trial because there was no other HOPE. Since starting the trial, I can honestly say I look forward to each new day. I’m looking forward to my birthday and Christmas, and being here for my wife and kids.
There are many superfoods available, if you would like more information on my particular trial, please Facebook message me. If you would like to start your own trial, we will provide you with all the information that you need to get started. Anyone that chooses to participate in their own trial will do so of their own volition and risk. Remember this is not a drug, it is nutrition that is thought to help the body heal itself. I am happy to share because I want to see all PALs healed. Stay strong, a cure is near!

https://www.youtube.com/channel/UCfawMSJWTpKxJJGE2cv973g
#als #supplements #trial#DandyOskey 

Wednesday, July 15, 2015

Good Afternoon: Resilience:ALS: Dagmar Munn



Good afternoon! What a wonderful day! I'm so grateful to be home from the hospital, going forth.and being healthy. 

I've began reading a book written by a dear lady who has been diagnosed with ALS (Lou Gehrig Disease) for sometime. Her name is Dagmar  I'm so inspired. Ny life is already being so transformed.

She shares how her father invented a rule during board games they played.Somewhere midway during the game, he'd call out "Rotate the Board:". The board was rotated and everyone went on with the game or got up angry and left. 
She shares, 'Over time I could see how my father’s game board rule tested sense of control over change, our reactions to losing control as well as our ability to recover'.

I decided to embrace this journey with reading the book and taking action as Dagmar has done. I hope you will embrace your own journey and walk through no matter what you face.

 'Recovery is dependent on our resilience'. I'll clarify that 'recovery' is anything that has hit you or slowed you down in ways that you don't like. And most of those things are not planned or in our control.

Most of us have not had our resilience tested or if so it's been very little. 
Once in awhile we have to tap into it. Mostly it's when we choose a change like a job, having a child, buying a new home or car.
Doesn't require much resilience does it!

What is resilience? It is defined as an individual's ability to properly adapt to stress and adversity. Stress and adversity can come in the shape of family or relationship problems, health problems, or workplace and financial worries, among others.

Most of us don't have ALS and  neither do I. 
The point in me sharing some of Dagmar's book is 'resilience' is one key we need to work with. 

Life is not always easy and changes will come whether it's by choice or things out of our control.
Not being well over the last year and at the same time following my passions and dreams to have my own businesses have brought me to a place of looking at how I deal with things in life.

Most of us also know at least in our head that not dealing with stress and emotions has a negative impact on our wellbeing and health. 
Before I got sick and ended up in the hospital this time I wasn't taking the 'dealing' of stress beyond my head and taking actions. Therefore, I wasn't taking good care of my health on any level. 
I'm learning there is a better way. It's a shame most of us wait way too long to do anything about how we deal with life. 

It's the fault of circumstances, it's choices we've made, it's some other person's fault, blah, blah, blah.
Can anyone tell me how far and anything positive blaming has got them. Can you share how excuses to not overcome and be our best has brought us good! 
Can anyone tell me good things that are coming from staying stuck? 

I'm looking forward to sharing more on my journey and do hope you will join me on your journey and chime in with your thoughts.
Until next time, 
Cynthia




 Please do take time to download Dagmar's free book and delve into a better life no matter what you face. 
http://alsandwellness.blogspot.ca/2015/07/new-book-align-lengthen-strengthen-your.html?spref=fb
http://alsandwellness.blogspot.ca/2015/07/new-book-align-lengthen-strengthen-your.html?spref=fb



Saturday, May 2, 2015

Please Help Raise Awareness of ALS




Tuesday, April 28, 2015


Raising Awareness to find a cure for ALS, or the lesser known FALS...

Hihi, my name is Angela. I have what's known as FALS (Familial ALS). Most people have never hear of it. Plus, a high school friend, former NFL player Tim Shaw has regular (not that regular means better) ALS.
We're trying to raise money for the cause. Last summer a lot of money was raised, but a cure is still far off.

I'm raising money for WALK & ROLL FOR ALS TEAM MMM-SHAW... We walk to raise funds for a cure... Here's a past walk:

**ClickHereToDonate





 Only approximately 5% of people are cursed with FALS-the KNOWING, WONDERING..who'll get it next?.. When? So far we lost my great granddad & my grandma. Had I known beforehand, I may have decided to not have children lest they be stricken with this INCURABLE ATROCITY, or sort that I will..

Everyone remembers last year & all the 'Ice Bucket Challenges' but those 'fun' fundraisers have come to an end. Yet, ALS hasn't. ALS 1st touched my life in 2001 when my best friend in the world-my grandma-was diagnosed. 92-95% of ALS cases basically just happen. No rhyme or reason. That other 5%? That's the % my family belongs to. We carry familial ALS, with no way of knowing if I will get it, my mom, my Uncle, Brother, Daughter..So it's scary.

What we're looking for us simple: a TINY amount of help. Help us find a cure: Everyone 'knows' cancer-when someone wears pink, people KNOW WHY-there's literally a billion dollar industry just in pink cancer flair products & advertising, along with the what? $3300 you have to raise JUST FOR THE STATUS OF A Susan Colman WALKER!!! We do it out of LOVE.
 Lou Gehrig's Disease (ALS) isn't like that. Not a bit. For instance, if I were to wear turquoise for ALS? No one would know why! But we still struggle with it & walk..& walk..& do our best to raise the little money we can.
The ICE BUCKET CHALLENGE of last summer REALLY HELPED, but that's all over now & people are still dying. My school friend Tim? Had to retire from the NFL-due to ALS. He didn't know that's what it was then, but it didn't take long..long
**We're all walking for someone. My Team Triple MMM? My grandmother: For (M)arjorie (M)arie (M)cDonald...I hope you never have to walk for anyone.
Beginning with this year's walk, (Which I'm looking forward to several more walking with our team this year, the more walkers, the more donations, the closer the cute! So I pray daily that I have a larger than life team!) is now.....
              **Team Triple MMM-Shaw**


**ClickHereToDonate

**It has changed for the beloved Clarenceville High School & Penn State Alumni, former Carolina Panther, Chicago Bear, & most recently, Tennessee Titan. He also is a very religious man who did absolutely AMAZING
missionary work, even AFTER diagnosis, he simply did what came natural to him-helping others!!

My grandmother was diagnosed at 79, Tim at 29. ALS as I'll explain below, doesn't discriminate...

Last year, when I found out Tim had contracted ALS, I knew we'd do things a little differently. This year, I would like to walk & raise money not only in my grandma's honor, but his as well.

ALS is similar to Cancer in some ways: it doesn't discriminate-gender, age, race, class, fitness, health, wealth, it has no preference, but UNLIKE Cancer, it doesn't matter WHEN you catch it.

(Side Note: There IS 1-yes, ONE, INCREDIBLY EXPENSIVE medication you can take [They even got the name correct on the bottle Lucious Lyon held on the show 'Empire'] It's called Rilutek (Riluzole). Honestly?? IDK how much it is now, I heard they've FINALLY made a generic, but still...We paid $957 PER MONTH for this medication running up credit cards, selling my grandmother's belonged vacation home... but we'd have done anything, & I mean ANYTHING. PROBLEM IS, it has HORRIFYING side effects, & WORST OF ALL???
It gives the average user an extended 3-6 mo. MONTHS. Let THAT sink in!!

**There are close to 1,000 pALS (people with ALS) in Michigan battling ALS everyday, and another 200 are diagnosed every year.

**ALS of Michigan provides critically needed, community based services to Michigan pALS and their families. From respite care to speech services to equipment loans to support groups, seminars, and workshops, we are there every step of the way to make living with ALS a little bit easier.

But, we need your help!

**I HAD to walk for someone, HAVE to.  Scratch that. I CHOOSE to walk for someone. Someone I loved dearly. Please PLEASE won't you help & donate?
**Every cent is a chance to make it so that NO ONE ever has to walk in someone's memory again! If it were ME reading another's plight, it wouldn't even be a matter of question, even if I could only afford $5!

**You know you can! Do it to feel good, do it for me, my grandmother, or another pALS angel. Or do it for Tim, for his team, or the NFL. Do it for Stephen Hawking, do it for the thousands of unknown victims who feel they have no hope because their disease just isn't "POPULAR ENOUGH" Do it because you beat cancer, or know someone who didn't.
Do it for a tax break, do it to pay it forward, to feel happy, helpful or accomplished, do it to warm your soul...
Whatever your reason, I DO know ONE THING & I ABSOLUTELY PROMISE: **There is not a SINGLE REASON NOT TO!!

**We ALL walk for someone..see:










**I pray with all my heart and soul that NO ONE who reads this will EVER have to walk for anyone, but the more we can raise, the less likely our future generations will have to...

**ClickHereToDonate

If you've gotten this far, i wasn't too thank you.
 **Thank You, from the impossible depths of my soul, Team Triple MMM-Shaw team leader, & unfortunate carrier of the FALS gene, Angela Galvin (amgalvin3@gmailDOTcom... Hopefully, with enough donations for the suprising amount of diligent doctors and scientists, one day the daily worry that one of my daughters will contact ALS will slip easily and happily from my mind...

**Please support our walk team so we can continue to provide the services that our pALS community has come to depend on. REMEMBER-there may not be an I in 'team' but there also isn't a 'cure' without U!

No comments:








#AngelaGalvin #ALS #support #awareness #fundraising #donate #MMMShaw #FALS

Sunday, April 26, 2015

Today in 1931 Lou Gehrig Hit a Home Run but Called Out for Passing Runner

Good afternoon to all. It's wonderful to see the rain gone and the sun shining.
I thought it noteworthy that today the person ALS was named after on Apr. 26, 1931 – Lou Gehrig hit- a home run but is called out for passing a runner.
Read More

This mistake cost Lou Gehrig the AL home run crown as he and Babe Ruth tied with 46 HR for the season. In the first inning with Lyn Lary on first and two out,...More
ATHLETICPOETICS.WORDPRESS.COM

#lougehrig #baberuth #homerun #calledout #April261931 #lostcrown #athleticpoetics #als

Tuesday, April 21, 2015

My Heart Breaks



I feel saddened by those in our lives being taken by ALS. My heart, hugs and prayers go out to Sandy, to Cissy and all those who have recently lost their loves ones. The hope is that Christ holds their loves one and the memories of our lives will always live in our hearts. I refuse to give up on a cure and an end to ALS/MND and other similiar afflictions. Rivqa

#als #death #loss #grief #sad #heartbreaking

Good Morning!

Good Morning! May you have the best day ever!

#goodmorning #sunshine #sunflowers #bestday

Monday, April 20, 2015

Remember Cissy Beauparlant who Lost a Dear Sister to ALS

Please stand with Cissy Beauparlant who is grieving the loss of her sister. 

"I lost my oldest beautiful sister last week to this monster of a disease . I pray for everyone affected by ALS. She was a wonderful woman , who gained her angel wings way too soon in life, but not soon enough with ALS. No one should ever have to suffer the way she did ! She will suffer no more , I thank God for that ! My heart is broken , but she is at peace."
#ALS #loss #grief #angelwings #heartbroken

Beyond the Ice Bucket Challenge

Here is the article in Cleo that Rikki Hodge-Smith done on Kylie and Adam. Very powerful material.
Have a read, share, like and get the story around so that more awareness is created for this terrible disease known as Motor Nuerone Disease. Awareness and funding are the most crucial parts to finding a way to stop MND!

http://m.cleo.com.au/get-talking/news/2015/4/beyond-the-ice-bucket-challenge/


The ice cubes we dumped over our heads have since evaporated. And the Stephen Hawking biopic The Theory Of Everything reminds us again of the debilitating, and fatal, motor neurone disease. But the real story of MND is in those left behind by its consequences. For recently diagnosed Adam, 31, this means a beautiful wife, Kylie, 30, two kids, a dog named Peanut and a romance spanning more than a decade that wasn’t supposed to end this way. 
The last time I saw Adam, 31, we were 11 years old and walking through Minnamurra Rainforest, South of Wollongong, for a primary school trip. Then, we didn’t know the genetic Motor Neurone Disease mutation he unknowingly carried and my early desire to write would be the reason we next meet up. On the two year anniversary of his dad’s death, taken by MND, I’m here to talk about his own diagnosis, and honestly, prognosis.
“It’s nice to finally meet you!” Adam’s wife Kylie greets me at the screen door. “I’m so sorry, we don’t have air con right now…” Adam hugs me hello with an awkwardness I can relate to. He was the tall skinny kid at school, and while he’s now expectedly kept his height, he’s much broader – a term I know he’ll think kind, as he tells me later, “I got fat!” He’s not, but MND has a taken an aesthetic toll.
It’s Sydney’s hottest day in 17 years, but Adam is wearing thick black socks. He limps through unopened packing boxes toward the dining table. Friends had banded together to build extensions on their home in preparation for future wheelchair access and they’ve just moved back in. “The support of our friends and family is one of the greatest things to come out of all of this,” Kylie tells me, and I’m pretty sure this public platform to thank them is the reason she said yes to the interview.
“Ah, the socks...” he says. I guess I wasn’t so subtle in taking notes. “My symptoms started at my toes and now they’re limp. I broke a toe when it caught under my feet, so I wear the socks to hold them together.” Segue done.
MND, as it’s known in Australia, might better be recognised as ALS (Amyotrophic Lateral Sclerosis), thanks to the Ice Bucket Challenge last year. The combination of genuine awareness and, according to Forbes, over $100 million in direct fundraising make it one of the most successful social media campaigns ever. The disease is a degenerative disorder of motor neurons in the brain and spinal cord, progressively wasting away muscles. Around 1400 Australians are living with the disease, and there is no cure. The general prognosis for those diagnosed is 2-5 years after symptoms begin to appear.
Kylie only whispers the word ‘widow’ once, while Adam goes out back to fix the sprinkler the kids, Ajai, 8 and Ciaran, 4 are loving like it’s 1989. “It’s scary to think of myself as that,” she says, her face not holding an ounce of the stress it should, but rather a quick contortion of heartbreak. “But, we still feel quite lucky.” It’s a unique combination of realism and positivity.
In the face of a disease that has no survivors, a fact they don’t shy away from, Kylie focuses on silver linings. “There’s something good about going through this young,” she says. “Before Ad’s diagnosis, we lived like everyone else does when life gets in the way – losing touch with old friends, taking things for granted and thinking a lot about the future.” She continues, “People do that though. We live like we’re not going to die. It’s a strange gift to be reminded of mortality. We live much more in the moment now, especially for the kids.”
At 16 Kylie moved to Adam’s high school, catching his attention rather dramatically – mid asthma attack. This was no damsel in distress act, though – his attempts to help were thwarted. After weeks of unwanted mid-pubescent boys’ attention for the new girl, she’d had enough – she’d wheeze on her own, thanks. But, being the fickle lot we are at 16, they won each other over and now hold a well-worn but affectionate title, ‘high school sweethearts.’
For a moment, it’s like I’m not there. Elbow on table, resting her head in her hand, she smiles at Adam. “Wow, it’s been a long time since I’ve thought about any of that,” she laughs.
Then, last year, Adam realised he couldn’t grip his toes. With the aid of his life-long family GP (who also diagnosed his dad), Macquarie University MND Research Centre, neurologist Dominic Rowe and months of painful and invasive tests, diagnosis was finally confirmed.
Packed away is a jar full of written moments, advice and memories on bits of paper for the kids to look back on. “There are things I don’t think I can show or teach Ajai, like shaving. I want Adam to film himself showing Ajai how, but he’s not ready for that yet.” Adam reiterates, telling me he thinks it’s morbid at this stage. But he does keep a diary. For now, it’s for no one to look at, and contains  small words of wisdom and jotted down moments, good and bad.
It’s hard not to look at your own life when you meet people facing some of your biggest fears, and question the things you worry about. Life is relative, sure – but Kylie was just a girl, the same as any one of us, who fell for a guy, had beautiful babies and wanted little more than a life that was happy. And the thing is, she is happy. She reminds me at the door when I leave, “It’s a sad situation, but I'm not sad. I hope you felt that.” 
Visit Adam's Facebook page: 
https://www.facebook.com/regalregiment/timeline

A Beautiful Family Ravaged By ALS




I wanted to share Bonnie, her husband and family here. Such a beautiful family.
Posted by Rivqa M Kohan on Monday, April 20, 2015
In spite of what they go through and as tired as they get, this loving family perseveres through it all.
It's touching to my heart. 
#ALS #family #love #ravages #heartTouching

Saturday, April 18, 2015

Good Morning!

 

Good morning everyone. I hope your day is off to a good start.
What's everyone's plans for today?

I've been a bit delayed posting lately but trying to turn this around. 

Cynthia and I have been working on putting together resources to help those with ALS, their families, friends and caregivers.

We are an affiliate for Real Food Blends. They accept most insurance which is a very good deal in my eyes. They are still setting up their affiliate account but you can go to their site at www.realfoodblends.com
They specialize in food for those tube fed. They products are wholesome and healthy with  No Corn Syrup or Preservatives.

checkmark3 Meal Varieties for Kids & Adults

checkmarkNo Refrigeration Necessary

checkmarkCovered by Many Insurance Policies

checkmark No Prescription Necessary

I encourage you to stop over and check them out.

Also we are aware of many using Coconut Oil in their diet or wanting to because they see or have heard of phenomenal changes in ALS symptoms.

We've been able to secure an account with a company that sells the finest in organic coconut oil and share the savings with you.
You can find the coconut oil at 

I hope you find this information helpful. Have the best day.
Rivqa

#goodmorning #blendedfood #als #whispersofcountry.biz #healthyliving #coconutoil #organic #realfoodblends

Tuesday, March 3, 2015

"Your Not You" Video Trailer

I discovered the video below on 'Patient's Like Me'. Glad to have found the site. Also very touched by the video. It's real life when it comes to ALS and being valued and retaining one's dignity is so important!

Wednesday, February 11, 2015

Tony, Lou and The Skinny Raccoons: Documentary of Tony Lollio

Good Morning




Good morning.
What's your plans for today?
Would you be willing to share what a typical day with ALS is like from someone who has ALS, a caregiver, family member, friend?
Kind Regards,
Rivqa