Thursday, September 2, 2010

A Little About Me

"When life goes to pieces - Try quilting"
                                                            ~author unknown

And that's exactly what I did!  You will see why this quote fits me further in this posting.

We had to go grocery shopping last night - yuck!  One of my least favorite chores, which is odd since I enjoy going to the local Farmer's Market every Saturday morning. 

Here is my picture of the day:


This is what's left of my hydrangea blossom but I don't mind since green in my favorite color!

Hydrangeas are native to eastern and southern Asia.  They can be either evergreen or deciduous and are produce flowers from early spring to late autumn.  In Japan the hydrangea is treasured not only for its beauty of flower and foliage, but is also used as an herb, certain forms have long been popular to create a sweet herbal tea.  Today the potted hydrangea is almost a symbol in France of Mother's Day.  Tea? - I don't think I would put it in my cup, but in my yard or in a pot - most definitely!



Today I thought I would share with you what it is like living with ALS.  ALS? What's that?  ALS is Amyotrophic Lateral Sclerosis,  also known as Lou Gehrig's Disease.  It is a motor neuron disease that is not completely understood.  ALS is a neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech, swallowing, or walking difficulty.

Here are some facts about ALS

~ALS is not contagious
 
~It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually. More people die every year of ALS than of Huntington's disease or multiple sclerosis and it occurs two-thirds as frequently as multiple sclerosis.
 
~Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.  About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
 
~ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. ALS can strike anyone.
 
 
I was diagnosed with ALS in 2001.  Luckily, my disease is progressing very slowly and I'm quickly approaching the 5 percent who will live 20 years (more if I have my way).  I'm very lucky!  ALS has caused weakness in my legs causing me to use a walker around the house and a power chair when going out and about town.  My arms are somewhat affected, but mostly has limited my ability to lift heavy objects or to do large repetitive movement - like washing windows (darn) as an example. 
 
How has ALS changed my life? 
     I believe it has actually made my life better.  It makes me slow down and enjoy the world around me.  I am much more forgiving of others.  It has brought our family closer together.  My husband and I have taken trips we probably would have put off and we enjoy each day we have to share.  

 
What do you miss doing since your diagnosis?
     I do miss being able to walk on the beach or to hike in the mountains.  Many of the state parks are wheel chair friendly and have accessible walkways.  In Yosemite, you can actually make it to the base of Bridal Veil Falls on a beautiful wood walkway.  I don't miss driving - believe it or not.  With the internet, I'm able to purchase just about everything I need and can waste plenty of time 'window shopping' online.  If I do have some place to go, we have a handicap equipped van that I can roll right into the passenger seat, lock in and away we go.

 
Is there anything good that has come from having ALS?
     I have met some remarkable people through our ALS support group that I probably would never would have had the pleasure to meet.  Unfortunately, we have lost some of our members to this disease but it is a wonderful group.  I'm sure anyone just joining the group would think we all have a rather morbid sense of humor, but you learn to laugh at your shortcomings - or you end up crying.  I believe my dear, sweet husband and I have become closer through all of this.  We have been married over 35 years and we cherish the time we have together.  My husband makes sure that I have almost everything I need to make my life easier.  I don't think that I would have made it this far without the never ending support and love of my hubby!  Another good thing is that I decided to take up quilting - and I am thoroughly enjoying that!

The two of us last year
 
 
Do you have any questions for me about ALS?  Please ask - I am more than willing to answer or at least find out the answer for you.
 
 
We are having our 7th annual Walk To Defeat ALS on October 2, 2010 here in Bakersfield.  You can check out my team, Linda's D'Feeters - you can even join my team, become a virtual walker, or make a donation (no amount is too small)!  This Walk raises money for our support group, provides us with a wonderful case worker, helps with our loan pool, and helps fund research. 
 
Here is a picture of my Walk team from last year.
 
 
We are a happy group, pups and all!

I hope I haven't bored you with this posting.  I just thought I would let you get to know me a little better.  I'm not looking for your sympathy - I am very happy with my life and try to enjoy each day that comes my way. 

So after all of this somberness I will leave you with something that really made me laugh:


You just gotta love Maxine!



FINAL THOUGHTS

I read a depressing thought yesterday - it's now only 114 days until Christmas.  Doesn't almost 4 months sound so much better.  Time to get those gifts made, purchased and wrapped.  Time to start nagging the family members for their 'wish list' - they do so love the weekly reminders of the November 1 deadline that I set - lol!  So now that you have that little thought in your minds, off to tackle Thursday and all you have/had planned!

9 comments:

Tiffany Sherman said...

Linda, thank you so much for the info on ALS! While we have been touched by it through a friend and a grandparent, there was so much I didn't know. What were your first symptoms and how do they diagnose ALS?

If you want to answer privately- tdscrap at gmail dot com

Thanks again for your openness!

Lynda said...

One of my best friends had ALS and she was such an inspiration in my life! I love Maxine. My favorite is: I keep hitting escape but I'm still here! This is right above my computer at work. Makes me laugh every day.

Cheryll said...

Thanks for sharing your story. I wish you all the very best...both in life and in quilting! I'll keep in touch by reading your blog.
:)

jillquilts said...

Thanks for sharing this news with us. I'm glad that you are making the best of the situation by living every day to the fullest! It is definitely something that the rest of us need a gentle reminder about every now and then. :)

Madame Samm said...

Dearest Linda. it is Madame "samm" here. I found you from your message at Stash.M. So glad I did. What a lovely intro about you. I must say, I am an RN and Nutritionist and I personally have never known anyone with ALS with your history Wow! honey, Now I can say I know of 1...You truly are an inspiration and it sounds to many. Your quote of life goes to pieces I have heard before but hearing it again has even more meaning to me now...Thank you, from my heart to yours...blessings madame samm

Exuberant Color said...

Thanks for all of the info and insight into ALS. I didn't know very much about the disease and it's lifespan. It sounds like you have the right attitude (20 years) so I hope you have many more years of being able to make quilts.

joe tulips said...

Even though I knew you had ALS from reading your blog, and then this post again...it isn't the first thing I think of when I think of you. You are a cooking, quilting, gardening wealth of information!

Janet said...

I really enjoyed your post about ALS and your attitude. I am a new follower coming over from Jill's blog. It's nice to meet you and I know I will be back. Your blog is the kind I like to read--lots of every day life and quilting. I am follower 49, so 50 is next. :)

Pam said...

Thank you for sharing your story ...you are an inspiration. Now I'm going to go make your quiche ...thanks ;)

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