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Ryanw

Member
Joined
Aug 22, 2012
Messages
21
Reason
PALS
Diagnosis
09/2012
Country
US
State
wa
City
Tacoma
Thanks for the thoughts, I now have fasciculation’s in my right fore arm it seems this is moving so fast, what ever it is.
 

Ryanw

Member
Joined
Aug 22, 2012
Messages
21
Reason
PALS
Diagnosis
09/2012
Country
US
State
wa
City
Tacoma
Hi guys I went to the ALS clinic today and was diaganosed with ALS. wow lots of tears, my wife and I broke the news to our 11 year old daughter. Hardest thing I have ever done in my life.
so much info to digest, I go back to the als clinic in 2 weeks for the full work up of social worker and so on.
Ryan
 

jamiem

Distinguished member
Joined
May 4, 2012
Messages
147
Diagnosis
08/2012
Country
US
State
TX
City
Mabank
Take it easy. Sometimes the progression is slow. You have time to process your thoughts and learn to adjust. This is a hard disease but this forum is here with all of the support we can give. Much insight can be gained We are here for you.
 

vzandt

Senior member
Joined
Nov 12, 2011
Messages
570
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
N.H.
City
Noneknown
I'm sorry Ryan. Remember..one day at a time. My husbands symptoms started like yours. Its very hard telling everyone. Telling our boys was one of the hardest days of our lives. I'm sorry you've had to join us but welcome to our club. These people have been a great help to me.
 

Ryanw

Member
Joined
Aug 22, 2012
Messages
21
Reason
PALS
Diagnosis
09/2012
Country
US
State
wa
City
Tacoma
I'm sorry Ryan. Remember..one day at a time. My husbands symptoms started like yours. Its very hard telling everyone. Telling our boys was one of the hardest days of our lives. I'm sorry you've had to join us but welcome to our club. These people have been a great help to me.

thank you good to hear
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Sorry Ryan. Truly.

One day at the time. Grief is hard thing. BUT keep in mind- there is life after diagnoses. I know it doesn't feel like it right now.

We are here with you, beside you and behind you.
 

Ryanw

Member
Joined
Aug 22, 2012
Messages
21
Reason
PALS
Diagnosis
09/2012
Country
US
State
wa
City
Tacoma
Well I start my last week of work tomorrow, I will retire on friday at the age of 39 and open a new door in my life. (im not looking forward to daytime TV) Good thing hunting season is here.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Do what you can and enjoy it! I wish you a slow progression so you will be able to spend time with your daughter and create good memories.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Please avoid those falls, they can be so dangerous. I'm sorry for your diagnosis. Ask about clinical trials, and apply for SSDI right away. Medicare kicks in the same rime checks do. Do you have any VA benefits by chance?

I think it was your wife's post I read a bit ago. You're all in my thoughts. It's an awful disease. Enjoy each moment.

If you're up to it physically, you might find some kind of work you can do at home if you don't want to retire. Some companies will make allowances.

You both will find a lot of support here. The ALS association may know of some support groups for your family, including your daughter.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
I'm so sorry, Ryan.

Get yourself a binder to take to clinic to hold any handouts from the various disciplines. Use it to note e-mail addresses and phone numbers from all the supporting staff so that you can contact them with questions between visits if needed.
(I go every 3 months). Take a list of questions for each discipline you will see.

Find out if you're eligible for any Clinical Trials and get the screening process underway if you're interested.
The CDC web site offers a list. NEALS (North East ALS Consortium) has a fb page. They offer info on trials as well as monthly webinars.

Register with the CDC. They have research projects underway and will ask for you to take several surveys as time goes by.

Register with both the ALSA and the MDA- ALS division for your area. They can mail you copies of their Caregiver Guides which are excellent resources. They have websites and publish newsletters about current research. Some branches offer excellent support services.

Let us know how you guys are doing. Someone on the forums has gone through what you and your family are experiencing and will be willing to lend a hand, a shoulder to cry on, an ear to vent to, or advice.

Hope the Clinic visit is a positive one. Take water and snacks! It can be a long day.
 

Ryanw

Member
Joined
Aug 22, 2012
Messages
21
Reason
PALS
Diagnosis
09/2012
Country
US
State
wa
City
Tacoma
Thanks Deb I will bring a note pad and binder and registering with the local alsa and mda.
Ryan
 

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
I am so sorry Ryan to hear of your diagnosis. Please try to get into a clinical trial. My dad just turned 78 and goes to a ALS clinic in Dallas. He will find out this week if he gets to participate in a trial or not. I hope they don't pass him over due to his age. But, his Dr. said they are making tremendous breakthroughs in research and new drugs will be coming out hopefully by the first of the year that look extremely promising. I would recommend if you are losing weight to try to drink Ensure or Boost too. My dad was just diagnosed in May so I don't know much about the disease yet. But, the people on this forum have hearts of gold and would love to help you with any questions you might have. We are all hear to support you. Sending you a big hug, Kim
 

Compass Rose

Distinguished member
Joined
Jun 20, 2012
Messages
133
Reason
Loved one DX
Country
US
State
WA
City
Seattle
I'm so sorry about your diagnosis, Ryan. My brother was diagnosed in May, so I have a bit of an idea of what you and your family are feeling. It must seem really overwhelming right now, and the only advice I can give is to try to take it one day at a time and not think too far ahead. Hold onto the hope that your illness will be slow to progress.

The shock of a diagnosis is terrible, but it will wear off after you've had some time to adjust. And you will find a community here of wonderfully supportive, helpful people with a wealth of knowledge to share.
 

Polar

Distinguished member
Joined
Aug 1, 2010
Messages
113
Diagnosis
11/2007
Country
CA
State
Ontario
City
Scarborough
Try not to dwell on it... Positive attitude helps in dealing with it.. My ALS symptoms started almost ten years ago (officially diag Nov. 2007) and so far I'm still walking and even driving (short distances) Just carry on as best you can..
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
923
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
Sorry about your diagnosis, Ryan. Stay ahead of your progression (hopefully slow) with the right Clinic and ALS Society who should help guide you through this illness. You're right - 38 is so young. Yasmin.
 
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