Hi there Pez--Sorry about your husband, and that;s just horrible about both of your mothers. How sad for both of you to be grieving for them as well as dealing with this disease. I hate to say this, but based on your posts, it doesn't sound like you have been offered much guidance from Jimmy's doctors on how to live with this disease. My comments below are based on caring for my Dad, who's had ALS for 18 months and declined very rapidly.
1. I agree with Al's sentiments about the risks and having kids. Here are two articles worth looking at:
http://www.mdausa.org/publications/als/als11_2.html#laughing
in which Jeff Lester writes about having ALS and having a young family, too. Yes, he even got his wife pregnant after diagnosis! It's a humorous article. I read it to my Dad, who has ALS, and I got a rare smile from him.
http://www.alsa.org/files/cms/Resources/Genetic%20Testing%20for%20ALS.pdf
This is an article that describes the genetic form of ALS and will give you some guidance about testing. The way I read it, your husband could ask his neurologist to order the test, maybe it would give some piece of mind. Don't let them dismiss your concerns. You have enough stress!
2. Boston has four ALS clinics, and one of the ALS research centers in the country at Mass. General. He should try to attend the ALS clinic there. Just call and make an appointment--they'll guide you through the rest. If you're currently using a neurologist who has no background in ALS or who is not affiliated with a research hospital, it may be time to find another doctor, preferably one associated with MGH or another university hospital. Don't feel guilty about switching docs--just politely ask for his records to be transferred.
Beth Israel Deaconess Medical Center
330 Brookline Avenue
Boston, MA 02215
Medical Director: Elizabeth Raynor, MD
617-667-8130
Lahey Clinic
Department of Neurology
41 Mall Road
Burlington, MA 01805
Medical Director: James Russell, DO
781-273-8000
www.lahey.org
Neurology Associates, ACC 835
MA General Hospital
15 Parkman Street
Boston, MA 02114
Medical Director: Merit Cudkowicz, MD
617-726-3366
University Campus of MA Memorial Health Care
55 Lake Avenue North
Worcester, MA 16550
Medical Director: David Chad, MD
508-856-4147
3. The local ALS Association chapter is another good resource for help with communication, assistive devices, loan closet, etc. They usually work closely with the ALS clinic so everyone is on the same page.
Massachusetts Chapter
75 McNeil Way
Suite 201
Dedham, MA 02026
781-326-8884
1-888-CURE-ALS
781-326-4940 (fax)
[email protected]
www.als-ma.org
Massachusetts Chapter - Wakefield office
7 Lincoln Street
Wakefield, MA 1880
800-258-3323
[email protected]
www.als-ma.org
4. Is Jimmy weak because he has lost weight? Or just weak from fatigue? Or both? Has he seen a pulmonologist to get his FVC measured? The ALS clinic should also have a pulmonologist on hand to evaluate this. Be prepared to discuss such traumatic issues like when to have a feeding tube, making decions on ventilation, etc.
5. There are lots of drug trials around. NIH has a site that describes clinical trials and where they are being conducted all over the country. Bring the list to Jimmy's doctor and insist he sit down with the two of you and discuss possibilities. Maybe wait until you enroll in an ALS clinic. Try these links:
http://www.alsa.org/patient/drug.cfm?CFID=1924868&CFTOKEN=86503769
and
http://clinicaltrials.gov/
Please don't take anything I've written as medical advice--just stuff to think about. hang in there--you sound like a wonderfully supportive and caring wife. Don't burn yourself out--leave a little time to care for YOU. Let us know how it's going!
Liz