my story so far
Submitted by jillinak on Wed, 07/09/2014 - 17:22
Life couldn't get any better right? I just turned 59 on May 10. As early as the summer of 2013, I would complain of my voice getting hoarse and the feeling that I had something stuck in my throat. (I'm not a spitter and trying to cough it up was hard). I blamed it on stress as I was working 3 jobs. I cut back to two jobs, but I was working 7 days a week. I complete my first 1/2 marathon and also kept working out 6 days a week doing Insanity. As an instructor I also taught the classes. I got really sick in September. I never miss work and I missed 8 days. Sometime around the holidays things seemed to change. I was noticing different symptoms. I was short of breath, my speech was slurred, my voice constantly hoarse. I was thinking perhaps I had had a mild stroke.
I had an appointment on January 17 but I cancelled it because I figured this would all go away. On February 26, 2014, I began to started going to the doctors and they were performing many tests including MRI's etc. Finally 2 drs agreed that I should go to Forbes Norris Research Center in San Francisco, California.
I flew down to Las Vegas, were I attended our annual Beach Body Summit at the MGM Grand. I had a lot of fun even though I could not talk. On Sunday, My daughter and her 5 month old baby and I began the trek from Las Vegas to San Francisco. We stopped in Santa Monica, and walked the Venice Beach. Very interesting. On 06/25/14 I had my appointment at the Forbes Norris Research Center in S.F., CA. A wonderful warm and caring staff. Dr Robert Miller then delivered news. I called my husband, put him on speaker phone so we could hear it together. I had ALS. Talk about your world crashing down into a million pieces. So what do I have 2 to 5 years? What kind of lifestyle can I expect to have? Oh the questions and list kept growing. I started to take Riluzole or Rilutek. No side effects except for the horrible taste in my mouth.
They recommended I get a stomach tube put in since I had already been having trouble swallowing and I'm losing weight. At the same time as the PEG, I am considering getting the NeuRx Diaphragm Pacing System.
Where to go from here. Dr Miller has been study ALS for 35 years said he has only been wrong twice. I plan on making it three times. I'm getting a second opinion from the Providence Portland clinic by Dr. Gosling.
I live in Anchorage, AK with my husband. I have 2 adult children and 6 grandchildren all in AK. I have two cats and a dog.
I have checked into the possibility of getting VA Benefits (as congress passed a law that anyone with 90 days of active service and has ALS should be consider 100% disabled)
I have also checked into Social Security Disability. I was told that if everything checks out I would hear a decision in 5 months and a check in January 2015. (Good thing my husband works and I'm on FMLA). I also qualify for short and long term disability up to 3 years from my current employer.
Comments
MaxEidswick
Thu, 07/10/2014 - 12:35
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my story so far
>On 06/25/14 I had my appointment at the Forbes Norris Research Center in S.F. ... I had ALS.
:-( -- Watch out for an emotional roller coaster you and family!
>So what do I have 2 to 5 years? What kind of lifestyle can I expect to have? Oh the questions and list kept growing.
there is no way to know ... we are all different ... don't second guess!
>They recommended I get a stomach tube put in since I had already been having trouble swallowing and I'm losing weight. At the same time as the PEG, I am considering getting the NeuRx Diaphragm Pacing System.
>Dr Miller has been study ALS for 35 years said he has only been wrong twice. I plan on making it three times. I'm getting a second opinion from the Providence Portland clinic by Dr. Gosling.
perfect!
>I live in Anchorage, AK with my husband. I have 2 adult children and 6 grandchildren all in AK. I have two cats and a dog.
see my blog for my story ...
>I have checked into the possibility of getting VA Benefits (as congress passed a law that anyone with 90 days of active service and has ALS should be consider 100% disabled)
Contact the PVA ASAP! you will not believe your VA benefits!
>I have also checked into Social Security Disability. I was told that if everything checks out I would hear a decision in 5 months and a check in January 2015. (Good thing my husband works and I'm on FMLA). I also qualify for short and long term disability up to 3 years from my current employer.
you sound solid and prepared with a good plan!
post pics of the pets :-)
Kind regards,
Max
BlueEyesOhio7
Mon, 07/21/2014 - 21:36
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my story so far
Jilinak, Wow you are really going thru it. Sorry to hear you are having such a hard time. I was diagnosed in June of this year. It's been a roller coaster ride since then. My husband and I have just been taking it one day at a time. It's difficult... I wish you well.
Lynne
Leslienu
Thu, 07/24/2014 - 15:13
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my story so far
Just found this! I found your diagnosis heart wrenching to say the least. I still can't get my head around it.
You are such a wonderful caring loving sister. I wish I could take this from you. Just know I am here for you always. I love you so much. Hoping we can spend some time together this winter here. Thankfully you have VA behind you! I pray for you always. You are my Angel.
kip1000
Sun, 03/22/2015 - 18:22
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my story so far
I have had massages for the last year and now 2 times a week.
If I was a millionaire, I would have one everyday.
ROM, light stretching, 2 aspirins and Vaping Cannibus relaxes my muscles and me feel better.
I started Chiropractic adjustments 2 weeks ago, which has helped my shoulder and neck support when walking.
I also have been taking LDN, Low Dose Neltrexone 3 months before I was diagnosed which immediately returned my taste for food.
Deanna's protocol supplements, ROM exercises and drinking 2 gallons of water a day, I believe has slowed the progression.
Currently on Bipap with oxygen when sleeping and now putting a pillow between my legs that has stopped hip pain when sleeping.
I am new on the forum, diagnosed 11/2013. I still drive and eat, talk and walk, but walking farther than to and from my vehicle is a marathon.
Good luck on handling the disease, it is what it is. Negative or depressed feelings are not healthy emotional responses and are detrimental to the
way you want to live your life, no matter if you have a disease or not. Life is good!
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