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adamfwilson

New member
Joined
Apr 13, 2015
Messages
6
Reason
PALS
Diagnosis
04/2015
Country
US
State
OH - Ohio
City
Cincinnati
Hello All,

Unfortunately, a few weeks ago, I was diagnosed with ALS. It has been nearly 2 years since my symptoms started, very subtly in my right at first. I am 33 years old with a wife and a 5 year daughter. We are confident in my diagnosis, as I trust my doctors and we basically eliminated everything else. My symptoms fit as I have upper and lower motor neuron symptoms. I have a 2nd opinion set for May 18th at Cleveland Clinic.

I think I have a pretty slow progression as I can still can move my right arm (though slowly and stiffly), type with two fingers, and it has recently (3-4 months) started to affect my right leg. My left side is currently completely symptom free. But I have nothing to compare it to --- what do you guys think about my progression.

I am lucky as my wife has a Ph.D in Molecular and Developmental Biology -- and is therefore researching away! She has many contacts that study ALS or knows someone that studies ALS that we are leaning on. She is the smartest and best person I know. I worry a lot about what is in store for her and my daughter.

My wife and I are both "OK, now what" people -- so after a few days of grieving, we are on to figuring out what to do next. I also understand that there will be more grieving to come as I hit different milestones.

Last week I made the announcement to my family, at work, and then on Facebook. It was nice to hear the nice things people said. It was really hard to tell my bosses, as I really love my job and consider them my friends as well. I told them I would stay at work as long as physically possible. Telling my parents was the hardest though -- that really sucked. My family has been very supportive so far.

Anyway -- sorry for the rambling. I hope to get involved on here for the support...you guys are the only ones that know what is happening. It's important that we stick together!

Thanks again for reading. Let me know if you have any questions about myself or about my progression.

Adam
 

adamfwilson

New member
Joined
Apr 13, 2015
Messages
6
Reason
PALS
Diagnosis
04/2015
Country
US
State
OH - Ohio
City
Cincinnati
FYI -- I just did the ALSFRS and scored a 33, FWIW.
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
So, so sorry to welcome you to this family. Young people like you are the ones we grieve the most for- but sounds like your attitude will help you make the most of the journey ahead. Indeed, you still have lots of life to live yet, and enjoy with your family. Please invite your wife to join us- it is a place for support, information, and affirmation that you aren't alone. Donna
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Hi Adam,
Welcome to the forum but so sorry for your need to be here. I agree with Donna. You might invite your wife to join us as well. There is alot of valueable information and support on here. Sometimes, we even manage to share a laugh or two together. You can always drop in on the thread the PUB IS OPEN. On there we chat about things other then ALS. I also sent you a visitor's message on your wall. Kim
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
Adam, so sorry to welcome another to the group. There are a lot of smart, experienced, kind people here who completely understand this disease and can answer any question you have.

So now you keep living and enjoy every moment with your wife and daughter and keep making new memories. Now you have this new forum family to support you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,160
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Sorry to see you here. Indeed live day by day and make many memories while doing so. As long as you are not exhausting yourself so that you can't enjoy your family working sounds good. You will know when the balance shifts
I am glad you have supports and resources. You will know that there is much on the horizon and my neuro thinks newly diagnosed slow progressors may benefit from some of it.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,531
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
So sorry to have to welcome you to our group. I've never liked roller coasters, and now I know why! I agree with Donna, your attitude will help you enjoy the life you have while you can. Prepare for the future and then live in today--don't look back and try not to look forward (once preparations are in place), and never waste your precious time and energy on what won't be. This is the life we now have, and the wonderful people on this forum help me remember that every day. Someone is always here to give solace or help you celebrate, and the information is invaluable.
 

patrick123

Distinguished member
Joined
Oct 4, 2012
Messages
437
Reason
PALS
Diagnosis
09/2012
Country
US
State
co
City
thornton
Adam,
Welcome to our little group. You will find supportive and caring people here.
 

canmark

Distinguished member
Joined
Jul 19, 2013
Messages
113
Reason
PALS
Diagnosis
07/2013
Country
CA
State
Ontario
City
Toronto
Best of luck to you Adam. Sounds like you have a good attitude and good support. I would recommend that you check with your company’s HR on short and long-term disability. Although it’s admirable that you want to work as long as you can, also consider that while you are physically able you may want to spend as much time as you can with your wife and daughter.
 

JimInVA

Forum Supporter
Senior member
Joined
May 29, 2014
Messages
796
Reason
CALS
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Greetings, Adam!

My PALS, Darcey, offers you her best... as do I. We've likened this to being stuck on a train that we never asked to get on. Once we accepted the fact that we were not going to be getting off, we settled in with the determination to make it the ride of our lives. Like many before have said, you have much living yet to do. We find reasons every day to smile, laugh and be glad for the moment. Our days are filled with adventure and our hearts are full from love and good things life continues to bring us. And as you said, we get it! Though unfortunate that you must find yourself here, I'm glad you've found us. I hope you will ask questions and share your concerns. And I look forward to hearing of each next obstacle that you've laughed at and conquered!

Jim
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done :))
 

Jeanau

Distinguished member
Joined
Jan 21, 2015
Messages
336
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Pittsburgh
Thinking of you and your family Adam. Spend some time making memories!
 

Mtzu

Distinguished member
Joined
Oct 24, 2014
Messages
186
Reason
PALS
Diagnosis
04/2015
Country
US
State
California
City
Los Angeles
Hi Adam,

Welcome (unfortunately) to the group and like Max said the roller coaster ride. You've come to the right place. I've found the people incredibly helpful and caring.

Michael
 

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
Adam I would tell you that life will change in how you do things but you can still do most everything you desire. Travel, spend time with your family, do whatever brings all of you joy. Take pictures, make photo albums or audio albums.....
 

BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
629
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
Sorry you have to be here Adam. I'm new to the club as well. I don't know what my future holds but I do know that I am in control of today. I chose to stay positive and help others for as long as I possibly can (and if in the future I slip into a dark place I ask you ALL to remind me of this post). Knowing our time will be limited, even though we don't know the duration, gives us the ability to live in the here and now and make the most of every day and gives you the chance to make a difference in others lives as well. Give as much as you can and it will come back to you.

"I may have ALS but ALS does not have me"

Vince
 
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