recently diagnosed - checking on ALS clinics for second opinion

[kptucker]

My husband was misdiagnosed for 2 years in Huntsville, AL. We finally went to the Mayo clinic in Jacksonville, Florida a year ago and he was correctly diagnosed, and they were wonderful people at the Mayo Clinic. They referred us to a Doctor in Birmingham, and we have attended the ALS clinic there since.

 

[DreamsEnd]

My heart just aches for you young folks that were diagnosed. My husband, diagnosed 1/21/14, and I are 70.

Sherry

 

[zoohouse]

Hello Rick; sorry for the confirming diagnosis. My husband is in his early 50s and has 4 kids, all grown except one who is 15. Kids follow our lead in how to deal with things, so if you and your wife can remain calm and find the humour your kids will as well. When my husband's 21 year old first came to live with us she was in tears a lot. This is of course understandable, but eventually she noticed that we were determined to keep on living life as fully as we could, and was initially shocked at our humour. But now she is taking it in stride and is getting on with her life, and cracking jokes herself. When his youngest comes for a visit he takes him for walks, on trails and down by the lake with binoculars and a plant book of north america, and a bird book and they search things out. Life isn't over yet, it is just different. I hope that your progression is slow, and you have many adventures to come.

Paulette

 

[Ladygray55]

Rick

My fiancé was diagnoised jan 2014 and we just went to UTSW in Dallas for his second opinon with dr. Jeffrey Elliott.

The second diagnosis confirmed that it probably is ALS. The good news is he is now part of the clinic.

While that day was a long day ( 4 hours) he met with all the individuals we will need for this journey. We met with breathing specialist, speech specialist, physical therapist, medical supply VP, social worker, dietitian, research person, and an MDA person.

When we finished I was actually feeling blessed that we met these people who constantly reassured us that they were there to help us through this disease. I did not feel alone anymore.

Once you are in the clinic you come back every three months to meet with all of them again.

Not sure where a clinic is close to you but very important to become part of it...they are funded by MDA who will help you get equipment and loan you many things. It was an amazing day

Diana

 

[ralsip]

Thanks again for the information. We are going back to Emory one more time but will then find a clinic closer to us in Louisville. Paulette I appreciate keeping a sense of humor. At my job there was talk of putting me in an administrative leadership position that frankly I didn't want. I kidded the current occupant of that position my plan to avoid it has been successful though I may have over reached a bit. He likened it to using an atom bomb to kill an ant. We got a good chuckle at that. Laughing about this diagnosis is not easy and I'm sure not for everyone but I do find it helps me cope.

 

[MaxEidswick]

>Hoping for a slow progression

ditto that


>Still trying to process what this means for us.

I think, for me, this is an ongoing process that has been changing as I progress. Some ups, some downs. Learning to ask for help is difficult, but somehow enriching. I think that is what I now look for: enrichment.

We are not in this alone.

Best regards,

Max