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
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