New at this
- Thread starter golf4kev
- Start date
- Status
ottawa girl
Moderator emeritus
- Joined
- Jun 14, 2012
- Messages
- 1,569
- Reason
- PALS
- Diagnosis
- 04/2012
- Country
- CA
- State
- Ontario
- City
- Ottawa
Hello and welcome. I joined just last week and am finding answers to some of my questions, and getting answers to questions I had never thought about. I was also diagnosed in April. Still hunting and pecking my way around this great site too.
hjlindley
Senior member
- Joined
- Dec 1, 2011
- Messages
- 761
- Reason
- PALS
- Diagnosis
- 10/2011
- Country
- US
- State
- VA
- City
- Richmond
Just remember that each case is different so don't scare yourself. I have had ALS for 3 years and am throwing out the first pitch at a pro baseball game tonight. Hope you are working with that amazing group at MGH! I have met Dr. Barry and was very impressed. You can ask us anything! No,really anything! We are all in this together and sometimes we take what we learn from each other here to our ALS clinics. For instance, I learned on the forum that Mestinon (a drug for Myesthenia Gravis) can help fight the fatigue of MND. Works great for me at .5 tabs 3 times daily. My neuro said it was cheap with a low side effect profile so we tried it. All because some one shared their story. We are here for you.
HelenL
Very helpful member
- Joined
- Dec 17, 2010
- Messages
- 1,602
- Reason
- PALS
- Country
- US
- State
- MA
- City
- Southborough
Hi golf4kev, welcome to another Mass person here (I was gonna say "mass hole", but some people don't take that right!) 
Have you started in a clinic yet? There are a few to choose from around the Boston area so you're lucky in that respect. I used to go to Beth Israel, switch to UMass Memorial's ALS clinic in Worcester as its closer and easier to get to... And we have the renown Dr. Robert Brown heading up the research there. Also Mass General... lots to pick from!
Let us know if you have any questions...
Helen
Have you started in a clinic yet? There are a few to choose from around the Boston area so you're lucky in that respect. I used to go to Beth Israel, switch to UMass Memorial's ALS clinic in Worcester as its closer and easier to get to... And we have the renown Dr. Robert Brown heading up the research there. Also Mass General... lots to pick from!
Let us know if you have any questions...
Helen
golf4kev
Member
- Joined
- Jun 13, 2012
- Messages
- 16
- Reason
- DX UMND/PLS
- Diagnosis
- 04/2012
- Country
- US
- State
- Ma
- City
- Lynn
I would just like to say THANK YOU to everyone who responded to my posting. I think for the first time I do not feel so alone in this. I have some good people at Mass. General Hospital, including Dr.James Barry working with me. I know I do not have to tell anyone here how difficult this has been. I know you all know. It is a blessing to have a forum of friendly caring people to relate to.
Thank you.
Kevin G.
Thank you.
Kevin G.
SueG
Distinguished member
- Joined
- Sep 30, 2010
- Messages
- 213
- Reason
- PALS
- Diagnosis
- 09/2010
- Country
- US
- State
- ME
- City
- central
Welcome, Kevin, even though youd rather not be here. A weath of experience and support here. I go to the MGH clinic too, wonderful bunch, and so knowledgeable and responsive. Dr. Berry is terrific. I'm also in the dexpramipexole trial there, I'd encourage you to look into clinical trial opportunities there.
Best of luck,
Sue
Best of luck,
Sue
Toto's Dorothy
Very helpful member
- Joined
- Jan 31, 2012
- Messages
- 1,033
- Diagnosis
- 11/2008
- Country
- US
- State
- Kansas
- City
- Emerald
Kevin and Ottawa,
Welcome to the family. Sorry for the reason. Get your feet wet or jump in running. We're here when you're ready. Many knowledgeable people here.
Welcome to the family. Sorry for the reason. Get your feet wet or jump in running. We're here when you're ready. Many knowledgeable people here.
CGARS
Distinguished member
- Joined
- Apr 24, 2012
- Messages
- 311
- Reason
- PALS
- Diagnosis
- 06/2011
- Country
- CA
- State
- Ontario
- City
- St. Catharines
Hi Kevin.
Hope you're a Patriots fan.
Ask what you need, share what you can, and stay positive. You'll meet some great people here that know, and understand what you're going through.
Cheers,
Casey
Hope you're a Patriots fan.
Ask what you need, share what you can, and stay positive. You'll meet some great people here that know, and understand what you're going through.
Cheers,
Casey
skipper66
Very helpful member
- Joined
- May 20, 2012
- Messages
- 1,527
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- SMALL TOWN IN
Hi Kevin,
Welcome to this forum. You will get alot of support and information on here. Keep a postive attitude and remember each case is different. Take it one day at a time and asked any questions you'd like. I personally don't know enough about this disease yet but many of the PALS on here are more then willing to help each other out. They can be pretty fun at times too.
Welcome to this forum. You will get alot of support and information on here. Keep a postive attitude and remember each case is different. Take it one day at a time and asked any questions you'd like. I personally don't know enough about this disease yet but many of the PALS on here are more then willing to help each other out. They can be pretty fun at times too.
- Status
