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TrishR

Member
Joined
Jul 16, 2014
Messages
15
Reason
CALS
Diagnosis
02/2014
Country
US
State
MD
City
Aberdeen
I'm Trish and my husbands name is Steve. He was officially diagnosed with ALS at Johns Hopkins on February 10, 2014. His dad passed away from ALS and we have since learned that two of his dads brothers also passed away from ALS so he has done the DNA testing and we are waiting for the results.
Steve is 53 and I am 50 years old and we have a 15 year old daughter.
He got his BiPap machine on July 11, 2014 and he will be getting a PEG tube July 23, 2014.

We used to live in SoCal (Southern California). We moved to Maryland in May of 2013 for his job which he had to stop on June 2, 2014.
We bought a house here in MD in April, 2014.

We also have a zoo of 2 cats, Emma a Mackerel Tabby who is approximately 3 1/2 years old and Gracie a Maine Coon who is approximately 2 years old plus Our Chocolate Labrador Rose who is about 15 months old and Buddy our Golden Retriever who is 8 months old. They adopted me.

Very Respectfully,
Trish
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,659
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi Trish. I am sorry you have to find us but glad to meet you. I am c9 FALS as is my sister. When you get your gene testing if you want to share the answer that would be great. Did they tell you they are working really hard on gene therapy. I think they have hope for a trial for a c9 therapy next year and probably sod1 too.
You do have quite a zoo! Good for you!
 

bigmark1954

Very helpful member
Joined
Jan 31, 2014
Messages
1,012
Reason
PALS
Diagnosis
01/2014
Country
US
State
UT
City
taylorsville
Greetings Trish......welcome to our club. Please encourage Steve to participate as well. We have a menagerie also, though greatly reduced over the last few years......4 cats, an Old English Bulldog,2 tortoises, 2 parrots, 2 boa constrictors, and one python from Australia. I used to breed exotic animals for the pet trade, and have had some pretty cool animals over the years!
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Hi Trish, My husbands name is Steve also and he is 56. We lived in MD for several years. We loved the Ellicott City area. Like you, we have a child.....our son is 12 and struggling with his dad not being well. My husband was diagnosed in May 2014 and still in denial but slowly accepting this disease and what it means. Welcome to our group. It is a great group of caring, helpful,knowledgeable people. Stephanie
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>I'm Trish and my husbands name is Steve. He was officially diagnosed with ALS at Johns Hopkins on February 10, 2014. His dad passed away from ALS and we have since learned that two of his dads brothers also passed away from ALS so he has done the DNA testing and we are waiting for the results.

Welcome, Trish! Sorry to hear of Steve's diagnosis. Especially if it is familial, one more burden to face -- hoping not.


>Steve is 53 and I am 50 years old and we have a 15 year old daughter.

I am 62, Sandy, the old gal, is 64 :). We have two: Jenny, 32, and Boo, 26. Slowly but surely I am filling stuff in in the forum's blog. We also have had 5 foreign exchange kids.


>He got his BiPap machine on July 11, 2014 and he will be getting a PEG tube July 23, 2014.

Is he a vet? It is important as the VA has significant benefits ...

I had to give up eating last February, so live on smoothies -- I'll send you Sandy's recipes if you want. Boring, but good for 2,000 cals / day


>We used to live in SoCal (Southern California). We moved to Maryland in May of 2013 for his job which he had to stop on June 2, 2014. We bought a house here in MD in April, 2014.

Do you like MD over SoCal?


>We also have a zoo of 2 cats, Emma a Mackerel Tabby who is approximately 3 1/2 years old and Gracie a Maine Coon who is approximately 2 years old plus Our Chocolate Labrador Rose who is about 15 months old and Buddy our Golden Retriever who is 8 months old. They adopted me.

well, we need pics!

We only have the four dogs now, two Irish, two LHMDs -- spoiled children really ...


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Max - Sunday, July 20, 2014 3:36:22 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.


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JimInVA

Senior member
Forum Supporter
Joined
May 29, 2014
Messages
865
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Greetings, Trish!

I'm sorry for the circumstance that brings you here, but am glad you found your way here. We, too, ended up at Johns Hopkins where my PALS and wife Darcey received her ALS diagnosis. We drive up for the Hampton Roads area in Virginia to get there.

I've not been within these forum walls for a month yet... but have found a most amazing group of people. My PALS will occasionally visit here, but seems to be more appreciative for the fact that I have a "feel good, comfortable place" to come to... to ask questions, to tell life stories, to share challenges/successes/thrills/victories and to talk with other "are there/been there" people who get what this ride is all about. I hope you find the same sense of "welcome" and jump right in to learn and share. Thanks for the shout on my "intro" page. And most of all... WELCOME!

Jim
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
Trisha, so glad you found us. We are family here. We cry, laugh, rant and share our thoughts and feelings. Welcome!

Debbie
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>Trisha, so glad you found us. We are family here. We cry, laugh, rant and share our thoughts and feelings.

and b*tch, moan, and groan ... not to mention rant and whine (Mark rants, I whine :))


-----
Max - Sunday, July 20, 2014 8:17:49 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
> We have a menagerie also, though greatly reduced over the last few years......4 cats, an Old English Bulldog,2 tortoises, 2 parrots, 2 boa constrictors, and one python from Australia.


for you Mark !



never mind. lost the link
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,734
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Welcome Trish.

I am so sincerely sorry you have joined us, but this is an elite group and you have found the best place to be since you have to. I don't always make full good english sense in my sentences but they all forgive me (at least they seem to)

As some of the other PALS have suggested, you could encourage Steve to join with his own user name as the support will be great for him too.

What I love here is that PALS and CALS support each other, there is no distinction made, we are just all muddling our way through and we help each other along. Do join in on conversations, it's amazing how much everyone here has to give, but never be afraid to lean on us.
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
954
Reason
PALS
Country
US
State
va
City
richmond
Just wanted to say Welcome
 

TrishR

Member
Joined
Jul 16, 2014
Messages
15
Reason
CALS
Diagnosis
02/2014
Country
US
State
MD
City
Aberdeen
Hi Nikki,
I will be happy to share the results of the tests. The originally did them in February but lost them so they have redone the tests on July 7th.
It's nice to meet you.
 

TrishR

Member
Joined
Jul 16, 2014
Messages
15
Reason
CALS
Diagnosis
02/2014
Country
US
State
MD
City
Aberdeen
Hi Max,
No, Steve is not a Vet, he worked on the APG military base as a Northrop Grumman Contractor. He is a Systems Engineer.
I like the changing seasons of Maryland better the the one season of hot we had in SoCal. I wasn't thrilled with Maryland when I was standing outside telling a stubborn snowblower to work in 3 feet of snow during the winter and I'm still getting used to the humidity. I like both places for different reasons.

I have some family on the East Coast so now I can visit them by train which is nice or a much shorter flight, my family still has a home on The Cape so I love to go there when I can and go sailing but haven't been there for awhile.

Our zoo has gotten much smaller since we moved here to Maryland. We originally drove here in a small SUV from CA in 5 days with me, Steve our daughter Katie, Thor our black labrador, Rocky our Mini Schnauzer, Maggie our Mini Schnauzer plus Gracie and Emma.

I trained Thor as a therapy dog and he was with me in Boston when my cousin ran the marathon and later helped people after the bombing. He died 2 days before Christmas from an aneurysm and we also lost Rocky and Maggie this year. Rose was a gift from a friend after we moved here to MD, she thought Thor needed a friend his size and I couldn't say no to keeping her after she handed her to me and I was getting puppy kisses.
We got Buddy after Thor died because Rose was so upset she began losing hair and not eating and the vet said it was because they were so close. Buddy is a smart goofball who can already open most doors and the new gate to our yard.

I honestly like The Cape and London the best, I was born in London whilst my parents were there visiting relatives and I felt the need to be born 2 months early. My mum always said i was born 2 months early to secure that dual citizenship, lol.
 

TrishR

Member
Joined
Jul 16, 2014
Messages
15
Reason
CALS
Diagnosis
02/2014
Country
US
State
MD
City
Aberdeen
Thank you everyone for saying hi, it's nice to meet all of you.
Please apologize any typos, not much sleep last night.

Katie our daughter who is 15 is coping as best as she can which her dads ALS, some days are better than others.
We are working on doing things on his "Bucket List" and she can't wait for one we will be doing most likely in August. They stopped giving tours of The White House awhile ago but a Senator who is a friend told a Congressman to set it up so he is and probably a meet and greet plus a tour of the Capitol Building.

We have been doing some remodeling to the house to make it more "handicap" accessible and just had a bathroom made into a roll in bathroom, ramp was built and all the carpet removed and wood floors put in which makes the hoyer lift easier to use and the carpet used to move from the weight of the motorized wheelchair.
This house is smaller than the one we rented when we first moved here to MD and i'm glad it is, no more stairs to run up and down and the other one was big enough that we all felt disconnected in it.

I'm a geek/nerd and can make websites but i'm still having trouble adding photos here. Lol
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
954
Reason
PALS
Country
US
State
va
City
richmond
Trisha, under the spot where you type in your replies, next to the post button, there is one that says go advanced. Push it, then scroll down to 'manage attachments', add away.
 
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