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AnnMarie

Active member
Joined
Sep 7, 2015
Messages
46
Reason
PALS
Diagnosis
06/2015
Country
US
State
East Coast
City
Somwhere
Good Evening All,

I have been lurking on the forums for a few months now and thought Iwould introduce myself as one of the newer members. I was diagnosed at Mass General ALS clinic on June 3 2015 with PBP. My symptoms started in early Nov 2014 with slurring. For the next 7 months I had blood work, MRI's, EMG's, and saw PCP, ENT, and 2 neurologists. I am now 5 days post op from PEG placement. I wanted that done before I had too many issues with breathing, weight loss etc.Still able to eat and drink some but now it's not so worrisome about trying to maintain hydration and nutrition. I can have ice cream for supper now, loving it. My speech is pretty garbeled now and I have a voice amplifier so I won"t have to talk to loud and get out of breath, also have the speech assist on my ipad. Limbs are still strong with good reflexes. I am out on LOA from my job and boy do I miss it, but as a nurse and manager talking, teaching and doing clinical presentations was a huge part of my job. Also, I live in southeastern Ma and my work was in NYC and NJ, too much traveling. Anyway, I look at it as early retirement. My husband and I are planning to go on vacation next month.
The thought of having this diagnosis and the progression is mind altering to say the least, but I am thankful for my wonderful supportive husband who is always able to make me laugh,and now my new friends here.


AnnMarie
 
Sorry to be welcoming you to this exclusive club AnnMarie.

You are doing amazingly well in accepting and being proactive. Good on you for getting that peg early, it makes such a difference and you can ease into using it. As you say, you can eat whatever you like and can manage easily because you can ensure you get all you need with the peg as a supplement.

I'm so glad you have a supportive husband and yay holidays!
 
Welcome. Sorry you have to be here though!
 
Welcome. You will have tons of support here if needed. It sounds like you are doing well with preparation. Enjoy the trip next month and glad you have a wonderful husband to ahare this journey with.
 
hey ann marie, you bet we'er your friends and welcome! post often so we can git to know ya better. have a great holiday and welcome to your husband also. love ya chally
 
G'day Annemarie.
I'm so glad you and your hubby are having a holiday.
This Thing does make us realise what's really important in life, that's for sure.
All the best with your journey, and thank you for sharing it with us.
God bless, Janelle x
 
Welcome aboard AnnMarie! You've found a wonderfully supportive community.
Audrey
 
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