When You Can't Look On Bright Side

You don't have to do it alone!

If you haven't already, please join us on facebook
https://www.facebook.com/ALSLouGherigDisease/

 

#StayingAliveIsNotEnough #NeverAlone #ALS #IWillSitWithYou #ALS

In Memory of Lou Gehrig

Thanks to Rick Berger for the image.

#Als #LouGehrig #Memory

Get Up, Dress Up, Show Up and Never Give Up

I have heard Dagmar Munn talk about getting up, dressing up, and showing up. Many times we read something or watch a video but we don't take action. We don't think it fits us or we just don't bother. After all we have ALS or our friend or loved one does. Why bother and just give up hope. NOT! Today be creative in taking action and share it with us.
Maybe it's sitting up, having a bow put in your hair. If your a guy how about getting a shave and a clean pair of socks. Have someone open the window. If you can be mobile have your caregiver/family/friend exercise your legs or get out for a walk.  Caregiver, family or friend...dress a bit nicer today. put on a smile,  take time to eat breakfast or lunch today.
Share with us will you all please! 

#GetUp #ShowUp #DressUp #NeverGiveUp

Good Evening

I hope your day has been alright. Feel free to share what your day has been like.

#Goodevening #sharing

Who are the Sid James Experience? We catch their manager, Lord Lee Bragg at work….

Tonight we catch Lord Lee Bragg, exclusive agent to the Sid James Experience, organising the June 4th MNDA fundraiser. We are also reminded of the sound that has taken the Sid James Experience in the last 20 years all the way from central Farnham to the hard shoulder of the A31. 
  https://onein400.com/2016/06/01/who-are-the-sid-james-experience-we-catch-their-manager-lord-lee-bragg-at-work/

 #SidJames#awareness #MND #ALS #Onein400

Strike Out ALS

In Honor of ALS Month 10% of all purchases from this link https://www.youniqueproducts.com/KLD/party/4090068/view
will be donated to the ALS Association to find a cure. For every $100 purchase you will recieve a free gift up to $30. All purchases will be entered to win the beachfront collection set from Younique. 

The aim of ALS awareness month is to raise awareness about ALS, gather support for those affected by this condition and to encourage funding and research into a treatment or cure.

ALS (amyotrophic lateral sclerosis) is a devastating progressive neurodegenerative disease which destroys the ability to walk, speak, eat and breathe. ALS was first recognized as a disease in 1869, by Jean-Martin Charcot, a French Neurologist. However, ALS is sometimes referred as Lou Gehrig's disease; named after Lou Gehrig, a famous baseball first basemen, whose career was stopped in 1939 when he developed ALS at the age of 36. At that time, ALS was given widespread public attention due to the high profile of this baseball player.


#ALS #StrikeOutALS

ALS Exercise with Dagmar Munn

 I firmly believe exercise no matter how small can make so much difference in our overall well being.

Dagmar inspires me so much. Having ALS does not stop Dagmar from doing all she can to stay healthy and fit.
Her creativity and tenacity to have a quality of life is an inspiration for all of us to follow.

We are all at different stages with ALS. If your not mobile ask your caregiver, and/or family members to do exercises with you. 

Watch Dagmar's video below and be sure to visit and join her blog. Your sure to be inspired to keep living a quality of life at whatever place your at. 

In this video, watch some gentle chair exercises for people living with ALS. Dagmar Munn shared this video in 2015, where she demonstrates some gentle exercises directed at patients with low mobility. They are really simple, slow, easy-to-follow sequences of movement that provide a break from long periods of sitting still.  You can find more details and more exercises like this in her blog: ALS and Wellness Blog – “Move Along"

 

Also be sure to visit https://alsnewstoday.com/2016/04/22/als-exercises-move-along/ for news and information as you proceed on your journey. 

#alsnewstoday #als #DagmarMunn #exercise #qualityofLife

"Until I Say Good-Bye", Susan Spencer-Wendel: Video: Book

Susan's story profoundly touches my life. Her courage and determination to live with joy and go for all the gusto she was able with her family, friends and doing things she loved doing. Never a more grateful example of an individual have I encountered. Susan is an example for all of us with ALS, caregivers, family and friends to keep before us as we go forth combatting this evil thief of a disease, ALS!

Cindy

 

Susan Spencer-Wendel’s Until I Say Good-Bye: My Year of Living with Joy is a moving and inspirational memoir by a woman who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS). After Spencer-Wendel, a celebrated journalist at the Palm Beach Post, learns of her diagnosis of ALS, more commonly known as Lou Gehrig’s disease, she embarks on several adventures, traveling to several countries and sharing special experiences with loved ones. One trip takes Spencer-Wendel and her fourteen-year-old daughter, Marina, to New York City’s Kleinfeld’s Bridal to shop for Marina’s future wedding dress—an occasion that Susan knows she will never see. Co-written with Bret Witter, Until I Say Good-Bye is Spencer-Wendel’s account of living a full life with humor, courage, and love, but also accepting death with grace and dignity. It’s a celebration of life, a look into the face of death, and the effort we must make to show the people that we love and care about how very much they mean to us.

#video #als #SusanSpencerWendel ##UntilISayGoodbye #book

                                     

A New Year of Hope

It's a New Year and a Happy 2016 to all of you.
Another year and let the 'Hope' continue. 
Let's not loose hope for an end to ALS.
Rivqa and Cynthia

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.

http://alsandwellness.blogspot.ca/2015/07/new-book-align-lengthen-strengthen-your.html

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

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 

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

Please Help Raise Awareness of ALS

Will anyone help now that the ALS "Ice Bucket Challenges" are in the past?

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!

About Me

Angela Galvin

View my complete profile

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

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.
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Apr. 26, 1931 - Lou Gehrig hit a home run but is called out for passing a runner

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