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.

Kristen Sauer


ALS Grumpy said...


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.


Marty Murray said...


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

Stacey Beetge said...

I tried to donate blood for the first time in my life about 4 years ago, and the local county health department telephoned me that afternoon and said I needed to go to see a doctor immediately because I had hepatitis B. I had absolutely no symptoms. I had several blood tests over the course of a year or so, and my doctor said I was a chronic carrier. My sister had Down's syndrome, and my doctor said I probably got it from her as she lived in an institution for a period of time. As the disease progressed all medication stopped working, i was introduced to Health herbal clinic in Johannesburg who have successful herbal treatment to hepatitis B. I spoke to few people who used the treatment here in USA and they all gave a positive response, so i immediately purchased the hepatitis B herbal formula and commenced usage, i used the herbal supplement for only 7 weeks, all symptoms gradually faded away, herbs are truly gift from God. contact this herbal clinic via their email healthherbalclinic @ gmail. com or visit www. healthherbalclinic. weebly. com

Tina Dellary said...

God bless Dr.PETER for his marvelous work in my life, I was diagnosed of HIV since 2015 and I was taking my medications, I wasn't satisfied i needed to get the HIV out of my system, I searched about some possible cure for HIV i saw a comment about, how he cured HIV with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine through UPS SPEED POST. I took the medicine as prescribed by him and 5days later i was cured from HIV, Dr.PETER truly you are great, do you need his help also? Why don't you contact him through you can also reach him on phone:+2348132537313 or wasthups hem On that very number (
whatsup :+2348132537313

4. ALS

Willson Care said...

Thanks to dr.ezomo for his good work I never believe that ALS has cure, I was ALS over 3 year now before I came across a comment about how
dr.ezomo cure ALS and herpes disease but when I saw it i have it in mind
that he cant cure ALS I just decided to give it a try I contact him that
night luckily to me he replied me, but I dont believe him I thought it was
a scam but I still hold on to see the work of Dr ezomo if he is saying the
truth he ask for some details about me i gave him all he needed and I
waited to see his reply to my problem after all, he told me to go for check
up and I went for HIV test I cant believe I was negative,am so happy and
grateful to God for using Dr ezomo to cure me, that is the reason why i
decided to write this wonderful testimony of our i was cured, i recommend
Dr ezomo to you all around the world,contact him on his Email or you can also reach him through WhatsApp number+2349069171173
dr.ezomo for helping me at this young age if you need help contact,
He can also cure so many sickness

immaculate jones said...

It’s obvious some patient with HERPES/HIV/CANCER are been enslaved to the antiviral and other supplementary Orthodox medicine just to help suppress the virus and not a cure. I have been with the virus since 2012 until I was introduce by a blogger who also narrated her story online on how she was cured of Genital Herpes after using Dr Jones herbal Medicine. This is a year and 2 weeks since I was delivered from Herpes. All thanks to God for using this Great herbalist to heal me. I have promise to keep telling good about Dr jones. Please fill free to share Your problems with him and don’t forget to tell him I did refer you to Him. Thanks. Write him on mail or WhatsApp him on +2347059073543. He deals with Alzheimer virus, Cancer HIV Herpes Genital warts ALS BV UTI Virginal infection Genital Wart HPV Hepatitis A/B Good luck HSV Pregnancy Ex back.

Unknown said...

Are you going through GENITAL HERPES? OR GENITAL WARTS? Dr. Iyabiye is the solution to your problem and I am a testimony to his great work. I suffered genital herpes and warts for a long time until 2 months ego when I read about his recommendation online on how he cured someone who went through the same problem. I contacted him and he sent me the medicine and after taking the medication for a month the pains where gone and I became healed /cured, I went to the hospital and I was tested negative which means I am free. You too can be free, reach him through: Call / Whatsapp: +2348072229413

Letter Robinson said...

i was diagnosed with ALS. my symptoms progressed quickly. son i was having difficulty breathing, swallowing and even walking short distance. With the help of DR JUDE HERBAL FORMULA, i have been able to reserve my symptoms using his herbs formula which i feel has made the most difference. it reserved my ALS. visit DR JUDE NATURAL HERBAL MEDS on blog
[drjudenaturalherbs. blogspot. com] or reach him directly on email, []