newely Diagnosed

[Nina Lamanno-Auker]

HI Im at 51 year old female that is newly diagnosised as of 12/30/08. I dont know wht I am looking for I guess. My involement is primarily right arm and Right vocal cord. This past week my left arm was effected. this was devistating to me since the Mayo clinic kept telling me this was slow progression and my symptoms would be suttle. I had taken a weekend vacation with my daughter in New york when this happened.
I will hopefull start medication this week which they tell me wont make me feel any different. I guess I need ways to cope and hope.
My children and husband are devistated.

Any Pearls of wisdom
This is the first time I've blooged.
Thanks Nina

 

[suzannj]

Hi Nina,
I'm not a PAL, (Person with ALS) but I saw your post and wanted to reach out. Give it a couple of hours and I'm sure the wonderful folks on this site will jump to your side and offer support. A lot of people find great comfort, support, and friends here and I'm positive your experience will be the same.

Firstly I am so, so very sorry that you have been diagnosed. I can only imagine what you and your family must be going through. Reach out to your closest MDA, and/or ALS Association as I've read that many PALS find their advice and guidance very helpful. PALS seem to experince periods of progression and then periods that everthing will plateau for awhile, so I pray that if your sliding a bit now, that it will slow soon especailly since the folks at Mayo felt that's how your heading.

Read over posts on this part of the site from other PALS, I'm sure you'll find lots and lots of "pearls" from them.
Hang in there, this is so very new you need time to adjust,
(((((Suzann))))) [since you're new to posting, the series of parenthesis means a virtual hug for you! ]

 

[beverly rees]

Hi Nina,
I am so sorry about your diagnosis. My husband was diagnosed in October 2008 with ALS. He has both arms and hand weakness. The intial diagnosis is very shocking and it took me a few weeks to be able to feel somewhat normal again. The most helpful thing for me was getting on the forum and realizing that this disease does not have to be fatal.

There are lots of people that have lived with this disease for over 10 years. They have alot of new technology that really helps people live a better quality of life. The new stem cell approval is very hopeful that they will find a cure for this disease.

Another thing that is helpful is to focus on the things that you are able to do. My husband has adapted to doing things differently and still enjoys playing golf, hiking and working.

I also think the ALS clinics are very helpful and also ALS support groups. They have such good information to make living with this disease easier.

I hope this helps and pray that your disease is very slow progressing and they will indeed find a cure soon. Bev

 

[BethU]

Nina, I'm so very sorry that you received this diagnosis. Suzann is right that many, many PALS live long, fruitful lives after diagnosis, and you will find many of them here.

These first few weeks are the hardest ... I couldn't stop crying for two weeks, I think ... but once you survive the jolt, then you begin to see that living with ALS is mainly a big management issue. You can still do almost all the things you enjoy most ... you just have to do them differently. You have to figure out ways around your physical limitations. Most solutions have been figured out already, and you can get invaluable information from ALSA (ALS Association). A case manager from ALSA will probably help you with step by step solutions.

Please post here as often as you need to. There are no limits on questions you can ask!

We are a family here ... patients, caregivers, undiagnosed people with baffling symptoms, relatives and friends.

Blessings.

 

[ktmj]

Nina, I am one with baffling symptoms as Beth calls them.:lol:

I can promise there are great people here that will help you along the way. You will never feel lonely here.

God bless.

 

[Zaphoon]

Nina, welcome to this forum! I'm sorry that you have been given the diagnosis. I hope you and your family are able to plug into the ALSA and MDA resources that are available in your area. They can be of great benefit.

Zaphoon

 

[Jules45]

Nina, God bless you and your family.

I'll be praying for you.

 

[KevinMDA]

Hi Nina,

Please contact your local Muscular Dystrophy Association office and get registered with them.

You can find it by entering your zip code at www.mda.org

They can provide assistance.

God Bless,

Kevin

 

[rocmg]

i'm sorry for you and your daughter and the rest of your family, nina.
i really hope that your mood lifts and you continue to lead as normal a life as possible.

god bless.

 

[Mahealani]

Aloha Nina:

I'm sorry to hear about your diagnosed and my prayers are with you and your family.

I too am a 51 year old female recently diagnosed (10/08). It has been very hard for my family but time has helped accept and cope with it a little. The forum has been very helpful and thoughtful, their wisdom and experience is greatly appreciated.

Mahea

 

[brendapals]

Hey there Nina,
welcome to our big forum family! I am 48yrs old, mother of 3 boys, and I was diagnosed on 6/3/08 with bulbar onset ALS. Mainly my speech is the problem, very slow, very slurred, slurred, slurred.
It took about a month for my hubby and boys to settle in to a new routine. Now it's pretty cool to see my hubby cook every meal we eat, my boys unload and reload dishes, and do the laundry. I still do as much as I want to and feel like, and I'm also still working 2 days a week as a nurse in a physician's office.
Ask away about anything, we'll be glad to help you thru it,
this forum is the best!
-b

 

[Nina Lamanno-Auker]

thanks for the reply

I too am a nurse. i am working full time 12 hr shifts. its good to know others are doing Ok. anything special I should know about taking the medicaitions regarding specific times and being on time. How old are your children? Nina

 

[brendapals]

hey,
Our boys are 18,15 and 8. Yes, a little surprise at 40!:smile:

They are a HUGE help with everything I ask them for. Not nearly as resistant as they were 8 months ago.
I've been a nurse for 9 yrs, finished nursing school when I was expecting the 3rd son. I just finished by BSN in Dec 08, something I had started working on about 4 yrs ago. Always wanted to teach, however, ALS has changed that path a bit.
I still think I'll end up teaching some day-but it might be in the form of writing a book!
take good care,
talk soon,
-b

 

[CindyM]

Welcome to the forum, Nina. I am sorry to hear about your DX but glad to see you are already making friends around here. This is a great site for information and support. Everybody is wonderful!
Regards, Cindy