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ersmzd

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Joined
Jan 28, 2017
Messages
13
Reason
Loved one DX
Diagnosis
01/2017
Country
US
State
IL
City
Morton
It was sometime last spring when my Mom's voice started sounding hoarse. She discounted it as being sick since she typically loses her voice once a year for a couple weeks when she gets a cold.

In June, my best friend got married and she couldn't stop crying. She said she was just tired ,but now I assume it was the Pseudobulbar affect.

In August she had an episode where she was short of breath but it quickly subsided . Then in early September we were at a theme park and she was short of breath. We figured it was just from the activity. It was hot and hilly. In September they came to visit me (I live 6 hours from my parents), and we took her to the hospital because she woke up and was having trouble breathing. The hospital ran a few tests and released her.

She then went to a Pulmonologist and a Cardiologist. In the meantime (in November) ,she noticed muscle atrophy in her left hand between her thumb and finger. Eventually they referred her to a Neurologist. He ran several tests and wasn't certain he could accurately diagnose her so she was referred to Mayo. We were there for 3 days and on January 27, 2017, she was diagnosed with Possible Sporadic Bulbar Onset ALS and they prescribed Neudexta, Riluzole, and a Bipap.

This weekend I went to visit and looked at the medical records Mayo sent. Her FVC is 34% and her CO2 is 55 mmhg. I have a lot of research to do and her first ALS clinic appointment is on February 27.

I feel like her progression has been fairly slow so far considering, but the respiratory numbers have me very concerned. I know Bulbar Onset has the shortest survival time overall. She hasn't made any decisions regarding feeding tubes and vents, but I hope once we go to the clinic we can get her to talk about it.

My Mom is 61 years old and has a history of head trauma including car accidents and a fall at work that resulted in a concussion, brain swelling, and 2 bones in her neck being fused together. She has also had botox injections 4 times a year for the last 5 or more years in her neck and head as a result of chronic pain from that work incident.

~Elizabeth
 
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scaredwifetx

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Forum Supporter
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
I am sorry for your mother's diagnosis. I am sure that there will be a lot of people here chiming in about the respiratory numbers. You can post any questions or concerns and will receive a lot of help nd support here. This forum has helped me through every step as a care giver, wife and advocate. Know that you are not alone and neither is your mother.

Give your mother and yourself some time to absorb the shock of the diagnosis. You will want to research here and with his clinic. You can also contact your local ALS Association. They are so helpful and can help you with the next few steps. Clinic is also very helpful.

The most important thing you can do, for your mother,is to be there for her as a son...as much a s possible. I lost my mother a year ago to cancer, two weeks after we found out she had cancer. I was with her until the very end and I will always cherish the time. I now also know to do the same thing for my husband.

My thoughts and prayers are with you.
 

lgelb

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Joined
Nov 5, 2009
Messages
9,133
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Seattle
Very sorry to hear about your mom, Elizabeth.

Was the CO2 number from blowing into a machine or a blood test?

Those numbers signify that she definitely needs the BiPAP since she is retaining CO2 and has lost significant lung capacity. So bird-dogging that with the DME firm would be high on my list. Let us know of any questions you have.

Best,
Laurie
 

ersmzd

Member
Joined
Jan 28, 2017
Messages
13
Reason
Loved one DX
Diagnosis
01/2017
Country
US
State
IL
City
Morton
The CO2 was from a blood sample. She started the bipap as soon as she got back home and said she sleeps better now.
 
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