Monday, March 31, 2008

A Young Woman's Story About Living With ALS


My name is Kristen. I am a young, energetic, newlywed. I am a dental assistant, certified nurse’s assistant and a nursing student. My husband and I enjoy spending time with family and friends, playing softball and volleyball, hunting, fishing and vacationing in northern Wisconsin. We dream about having a family and growing old together. Our future is bright!

That was me before the fall of 2000 when everything changed. I started walking strange and was losing dexterity in my fingers. After lots of tests and different doctors in February of 2001 I ended up in the Neurology department at the Mayo Clinic in Minnesota. When you’re from the Midwest you know it’s serious if you have to go to Mayo. They don’t mess around. We were told to prepare to spend a week there. They would continue to do tests until a diagnosis was made. We spent less than a day at Mayo and received the worst news and what should have been the best news of our lives. I left Mayo that day with the diagnosis of a terminal illness, ALS, and the shocking news I was going to be a mother. I was 24 years old.

It was a long 9 months. I was given 2-5 years to live. How was my husband going to raise a baby, take care of me and continue with his job as an electrician?

Fast forward 7 year and all I can say is God had a much different plan for our lives and time has a way of working things out. My husband has stood by me through good and bad. We have a beautiful 6 year old son. I started my own business putting 8mm reels, VHS tapes, pictures and slides on DVD. I’ve outlived the 2-5 years I was given. Over all I have a pretty good life. That doesn’t mean me or my family have an easy life. ALS is a harsh and ugly disease that affects the entire family. A lot of people walk away because for one reason or another they aren’t able to deal with the reality of ALS. I am very lucky my Mom was able to retire and become my primary caregiver along with my husband. The only functional movement I have left is my head and neck. I’m also able to speak a little. Otherwise everything is done for me.

One thing people have a hard time with is my quality of life. They don’t understand how I consider what I have to be a good and productive life. I learned long ago not dwell on the losses and be thankful for what I have. I spend everyday watching our son grow. That is my reason to keep going.

My gripe is insurance companies be it Medicare, Medicaid or private insurance. It’s a constant battle to get them to pay for the things I need. I’m fortunate; my dad is very familiar with how the insurance companies work. He keeps pushing until they finally pay. The latest challenge has been getting my electric wheelchair adapted so I can drive it by myself. I have been waiting 4 months for insurance to approve the new parts. In the mean time I only have my manual wheelchair. Which means when I actually get out and go to Wal-Mart my mom has to push me with one hand and the cart with the other. It shouldn’t have to be so hard to get the things we need covered by insurance and my problem is minor compared to some of the horror stories I’ve heard.

We, as a community of people “living with ALS”, need you to help raise awareness about ALS. There is no celebrity who has been touched by ALS to make our disease a household name like Cancer or Parkinson’s disease. Please help give Amyotrophic Lateral Sclerosis a face.

Sincerely,
Kristen Sauer sauergirl@milwpc.com

9 comments:

ALS Grumpy said...

Kristen,

Yours is another compelling story. I pray that our stories get the interest that they deserve.

juri said...

Thank you Kristen for sharing your story. You have a very strong inner strength. I will have to try to emulate your positive attitude for being able to appreciate what I'm able to do rather than like you said, dwelling on the losses. I'm sorry about the constant battle with the insurance company.

Hope there is a cure for PALS. I have a feeling that it may just be around the corner.

Sincerely,
Juri

Marty Murray said...

Kristen,

You can solve als and thrive.

People do it all the time.

Als happens when things come together to make it happen, and that is not even close to being just about genes by the way.

The things that make als happen are things you have the power to change yourself.

What that means is that you can heal yourself.

So go for it.

ALS Grumpy said...

Marty please tell us more. You are holding out hope where hope is a rare occurrence. I know at least one person with ALS feels you have something worthwhile.

juliet caria said...

I share my desperation, as my wife was diagnosed with ALS last January. I have scoured the internet looking for some glimmer of hope, however,i found one. This is what I know about HEALTH MED LAB Clinic and the drug Nurown. The Clinic HEALTH MED LAB was founded in New York and moved to South Africa. The drug has evidently been given "fast track" status by the FDA, which means trial stages 3 ad 4 are being conducted simultaneously. I believe these stages are 18 month studies which began last spring. I have asked our neurologist about what was happening here. He told us one of his patients Who just got cured again from ALS treatment with his medication, while the cells could be collected and cultured in South Africa, they don't have to go to Austria to get them implanted. Again with positive results. He has also had patients go to China and Mexico for similar treatment, with no success.My wife neurologist should be aware of any clinical trials that are available. My wife is now strong and healthy without any atom of ALS in her blood, You can contact them for ALS Cure at MDA OR healthmedlab@gmail.com

Stacey Beetge said...

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