Hi, It is out of sorrow that I come to you..One of our dear family friends tests came back yesterday as full blown ALS. He is in his 50's and is having slurred speech., weakness in hands and lower arms, trips, etc. We were praying the test results (electrical conduction of nerves) would present a slower progressing form of this disease, but he has ALS. They started him on medication to slow the progression of the disease. He was given 1-5 years to live.
My question is for people who have this disease......how can I help? I will see him tomorrow and I dont want to cry out of fear of upsetting him, I just am very confused and want to do of the right things and say the right things. It is so shocking and will be so hard to watch someone you love slowly lose so many things. ANy advice on how to handle this I would be ever so grateful.
Thank you very much

Hi,

I lost my Mom to ALS almost 5 years ago and attend ALS support group meetings where patients, friends and family come for support.
I can tell you the most important thing for you to do- is to be you. If you need to cry- then cry. It is more important to a person with ALS that everyone act normal around them instead of putting on a smiley face.
The second most important thing to do is to be there for this friend. As the disease progesses- it takes away so much. It makes a person horribly tired.
Don't just offer to do things for the person, because most people in this position out of kindness say "no"- but they truly do need help. Whether it is just coming over and mowing the lawn once a week- or something really special to do (while the person can still eat) is to bring them over a meal at least once a week and just spend time with them. As the symptoms progress- this disease becomes isolating for the individual affected. Also- try to attend a support group in your area- whether it be an ALS Association support group or a MDA/ALS Support Group. This is where you, your friend and your friends family can get the most support and learn ways to help "Live" with this disease. Remember- it is in fact that we all will die- but don't treat this friend like she is dying, because while she still has life then she is living and I am sure that this is what she wants to do.

My prayers are with her and those close to her

so sorry to hear of your friend... I have a close friend that is waiting for confirmation on dx of als... his rheumatologist believes that his problem may stem from cholesterol-lowering drugs...these drugs are causing some people a lot of problems wuth their nerves & muscles.....you & your friend are in my prayers...

As a former care giver to our PALS through his six years with ALS I can tell you that the advise given to you to just'be there for them' is the best. It will be hard at times to continue visits but that is when the TRUE friend shows up. The people we remember as helping us the most : the friend who can by every thursday around three,he would talk to our PALS about what was going on at work,watch games on TV with him,watch videos with him,brought him lottery tickets,his dog a bone etc.; we remember the people who brought a meal once in a while; the ones who would come to be the second person needed to transfer our PALS;the friend who got him out fishing when that was not an easy task because his legs were not working too good at that point;we appreciated most the people who made us believe it would not be an imposition if we called them at any time for assistance. They may not need your help right away but stay in constant touch,visit,call,send cards etc. mari

My grandfather died of ALS in 1999 and even though I was in seventh grade, I still understood a lot. When you're with your friend, this may sound weird, don't bring it up, nor talk about it unless they do. Just have a good time with them while you still can. If they need help doing something then help but don't burden them.
~ashley~

I would make sure that you get your friend to an LLMD (lyme literate M.D.) and make sure his blood test is conducted at IgeneX labs in Palo Alto for lyme and tick borne coinfections.

I became very ill a year ago and after going to Johns Hopkins and over 15 doctors - having two negative lyme tests finally found an LLMD in my area - went through IgeneX and was extremely positive for lyme, babesia, and ehrlichia.

Lyme is prevelant everywhere not just the NE as the CDC would lead you to believe. I have been doing a 8 months of research and the majority of doctors even at our leading hospitals have their heads completely in the sand when it comes to lyme.

Check out the Lyme Board here at Healthboards for more info. or an LLMD in your friend's area. Lyme can is so frequently misdiagnosed. We have a man on our board who had been treating MS for two years...was not improving...got tested for lyme and was positive...started antibiotic treatment and is improving now.

Lyme is a serious and sometimes fatal disease.

-ncgirl88

All the previous advice that has been posted is the best thing you can do for your friend. My father-in-law died in December 2003 from complications of ALS. I was the only one in the family who wasn't working at the time and because of this, I was fortunate enough to spend the last year of his life with him. I took him to doctors appointments, helped him get around the house and just sat and talked with him for hours. It was something that I would never trade for everything in the world. This disease robbed him of a very energetic and fulfilled life. I'm sure any help or companionship you may offer would be most greatly appreciated. Also, your local ALS chapter or ALS Center may be able to assist you with any of the tools needed to make your friend's life easier. There was an ALS Center associated with my father-in-law's ALS doctor at the hospital. They loaned us chairs for the bathtub, raised seats, wrist bands for his hands, canes, walkers, a medical bed for his bedroom, and a motorized chair for the livingroom. We couldn't have done it without their help.

Be his friend always. Not just when things are good now. My Mom has just passed away from ALS. She had a dedicated group of friends who came over & held her hand, prayed with her. Took her outside to be in the sun. Funny thing is, one told me. I am not blessing your Mom by being with her. She is blessing me many times over allowing me to be with her! I will never forget those words. We had a rotation of people who cooked for her, fed her. Someone to clean for her. And not to forget, my stepdad to be taken care of. It was wonderful!

Research it. Go to the als website. If he wants to talk about it. It is early for him. Later in my Mom's disease some people mostly talked about the medical stuff, end of life decesions. I asked her if she was afraid? What would she miss? Talked about my childhood memories!

You are a good friend for already being here!

Pam