First Clinic Appointment Qs

[notme]

HI

Not seeing too well today, so pardon me if this has been said--at 112 and 5'6", she's obviously getting weaker--and a pEG if its going to be implemented, is better done sooner rather than later. She CAN still eat with one inserted--it just has the benefit of her not having to--so some additional nutrition could easily be added via whatever the dietitian would suggest.

Deterioration increases when weight is lost. Also, if shes struggling later in the day--its only a matter of time til she falls. Falls are bad for PALS. Suggest perhaps that she get a wheeled walker if she has good hand usage...and a manual chair perhaps--when she's out and about - if only to conserve her waning energy.

Hugs hon. Sounds like your parents are lucky to have you!

 

[Uptown]

Jamie,

You sound a lot like me with the drive to get info. Sometimes I feel like I am catching up on learning but doing it outside of the "system". Try not to focus on all the possibilities because it is overwhelming at times. I have not been diagnosed with ALS but have significant lower motor neuron issues from r aviation damage to the cervical area including spinal cord, swallowing, now breathing and high bp except when laying down. I spent 2 yrs trying to get into Texas Neurolog and after a ton there finally I was referred to Dr. Heintzman who is considered one of the best in the region. Dr. Viroslav at UT Southwestern is also the neuropulmonologist to see in the area as well. He was one of the inventors or whatever you want to call it for the diaphragm pacer device. I need to schedule a sleep study there because I am struggling to breathe at night especially which makes me very tired at night. My issue is from the jaw muscles atrophied so the jaw Leroy's back and cuts off the air. Also I got down to 115 @ 5'10" and they just wrote me off. My chest muscles under the ribs are gone although I have rebuilt the outer muscles and the abdominals.

Ironically I have dry mouth and thick saliva from the radiation and the left parotid gland is too weak to expel it so it is always like a big access in my cheek. I aspirate and have for several years but so far no pneumonia...knock on wood. Lipids (fat) are very important for nerve conduction and protein is very important for slowing muscle deterioration. I packed on about 30 lbs this year and now add about 50 grams of protein via smoothies and life is much more enjoyable. I drank 7-8 bottles of Boost/Ensure mostly the plus version which is about 350+ calories and 1-2 Hugh protein for over 100 days which kept me alive. My digestive system completely shut down but packing in some veggie soup and lots of calories seems to have everything working. I try to eat very 2-3 hours now and that helps. Since I have had dry both for almost 12 years now from radiation damage I drink a ton anyway but still get dehydrated outside when the wind is strong. Weight maintenance is the most critical as loss of weight causes a lot faster deterioration of muscles which then taxes the energy level much more. Lack of sleep makes the next day horrible for me with symptoms much worse.

Hiroshi Mitsumoto has a great ALS book that explains so much and is available in a e-version. Well worth the read provided you can read to gain knowledge and not to gain fear if you know what I mean. My next adventure is to get into the ALS Clinic and I just need one more appointment to get there...fingers and legs crossed since my toes cross their own!

I don't have ALS but since my neck is so damaged from throat cancer treatment I have all the problems of bulbar ALS but no upper motor neuron involvement. I was even told "you definitely don't have ALS or you would be dead since it has been 5 years from significant symptoms appeared. But, you do have late stage lower motor neuron disease and will either die in your sleep from breathing stopping or choke on those mucous plugs from lung secretions." Not sure whether to challenge or say thank you. SMH

I research ALS to help with symptom management and have traveled this rough road since 2007 pretty much on my own so the info is out there. Best wishes you can quickly disseminate the info and help your mother and father as much as you possibly can.