Have amyotrophic lateral sclerosis (ALS): Want to connect with others

@barbarapolo If I may, I'd like to offer some ideas and suggestions in how to address the anxiety and depression you are experiencing.

You've had a huge shock with the diagnosis of ALS. Your life and your plans for the future are changed. It's a big adjustment and the mental health symptoms you're experiencing are part of that adjustment. It's awful. There are people who can help and sometimes we have to advocate for ourselves to get that help.

Allow me to say something about medication for anxiety and depression. I've been on an antidepressant for many years as have various members of my family. Sometimes it is "trial and error" to find the medication that will work best for you. Also, there are often side effects such as the fatigue you experienced that will go away once your body has adjusted to the medication. This can take anywhere from a few days to a few weeks. In the meantime, while you wait for the medication to be effective your provider can prescribe something else temporarily to help you with the symptoms you are still experiencing.

Would you like to ask your doctor for a referral to a psychiatrist (MD)? If you reside in the U.S., there are 8 states that license psychologists (Ph.D. or PsyD) with additional training to prescribe this kind of medication. These states include Colorado, Idaho, Illinois, Iowa, Louisiana, New Mexico, and Utah. I believe Vermont just approved this also.

For talk therapy, sometimes referred to as psychotherapy, you can first ask your doctor for a referral. There may be a social worker in your medical center who works with patients. Or your doctor may make referral in your community.

Psychotherapy can take place in the office or in many states can be virtual (called telehealth). Why meet with a therapist virtually? Instead of relying only on the therapists in your local community insurances and regulations allow you to meet with a therapist who is licensed to practice in the state where you reside. For instance, I live in Michigan in a rural area. I'm allowed to see any mental health therapist - in person or virtually - who has a license to practice in Michigan and takes my insurance.

Here is a resource that could help you to find a mental health therapist in your state or area. Psychology Today also has resources to find a support group.

Psychology Today: Find a therapist near you:

-- https://www.psychologytoday.com/us/therapists?

When will you see your doctor again so you can ask about a referral?

@naturegirl5 thank you! I’ve email someone near me who I think could help me. You are the only person who has helped me in this way!

@ellu you are special! To be so active! I was diagnosed two months ago and spent these two months in depression and having the first anxiety attacks of my life. At this point I am starting to desire to get back into life. I am doing my housework and leaning on
Others less. I have started going out a bit. What are you doing that keeps you so active? Were you at the beginning depressed as I have been?

Dear Barbara I will keep you in my prayers. I believe you can be helped to feel better with interventions focused on how you feel about your diagnosis. I agree with moderator Coleen Y. You need someone to share your thoughts with and speak about what you are feeling. This is not an easy adjustment neither the diagnosis or breaking the ice to speak with a therapist but being able to speak can relieve the anxiety you are burdened with. God bless you and surround you with love.

@barbarapolo That’s great. I hope you hear back very soon from the person you emailed. I’m glad I could be helpful to you.

@barbarapolo Dear @barbalopolo, No, I was not depressed when I was first diagnosed, as I have faced death and thought through death before. I also suffer from Bipolar Disorder (for over 20 years), and have experienced deep, deep depressions several times. I have been hospitalized because I was suicidal several times. The thing is, through these exeriences I was confronted by the prospect of death head-on, and over the years I have been forced to sort out my feelings about death and work out a way of dealing with the prospect of disability and death. This is easier said than done. The first time you confront the possibiity of death it is shocking, overwhelming, and leads to panic and severe anxiety. What you have expeienced is completely normal. The first step you need to take is talk about ALS and death with family, good friends, or even a psychologist, to set your thinking straight and come to terms with your diagnosis. This is not quick or easy. It may take se veral months to work your thoughts through and learn a way of coping with your diagnosis. It is normal to panic at first, but by talking things through things will become clearer. You might still hate your diagnosis, but you can learn to live with it. You can learn to think about not what you can/can't do now or in the future, but about what you CAN do and what you WANT to do in the rest of your life. I am retired, so I have cut all the things I didn't enjoy or gain pleasure from out of my life, and focussed on things which I like and want to do. This might be spending time with family, making a special trip somewhere, having lunch with friends, seeing the latest movie, taking up a new hobby , lying aound reading an intresting book, watching something on Netflix.... focus on those things you enjoy, either by yourself or with other people. Evey day is a new day, and as you and I face a limited lifespan we don't want to waste a single day! Look for support groups near you, and make the effort to met people in the same situation. Not only can you find comfort, but you may be able to give comfort to someone who needs it! I can't tell you, no-one knows, how and how quickly your symptoms will develop, but don't think about that!
Look for the good things in life, enjoy the things you like, and accept the support and help your family and friends offeryou. They are worried, and want to help, so talk about your fears and worries and let them into your life. I was diagnosed one year ago, and although I use a roller for mobility (my balance is bad) and I have a bit of weakness in my left arm, I don't let that stop me from going out of the house and living in my community. This sounds sentimental, but make the most of each day, and marvel at the wonders of the world. Keep posting on this site, so you can meet and relate to others on the same path. With best wishes,
@ellu

@barpit a month ago I tried to get an appointment with the only doctor who treats ALS on Staten Island. My appointment is in April of next year. And I can’t join the support group until I see the doctor.

@barbarapolo That appointment is just too far away. Can you be an advocate for yourself and call the doctor’s office to ask for an earlier appointment? You could ask to be put on their “cancellation list” in case an appointment pops up became someone else cancelled? Would you be willing to call the office on a regular basis and ask if any appointments have come up?

I know how hard it is to do what I’ve suggested. I have to will myself to do what I’ve suggested to you because I’m so afraid that the office will view me as pesky. But I remind myself it’s my life and my health and I’ll do whatever I can, in a firm way, to advocate for myself.

The visiting nurse tried to get an earlier appt. The patient advocate tried to get an earlier appt. No dice.

@barbarapolo I continue to pray for you that you have a substantial change in status in what sounds like an ineffectual version of care for one of five boroughs of New York City. It is shocking to me honestly and doesn’t hundreds of NYPD call Staten Island their home? My goodness couldn’t you have a police cruiser take you to office with lights flashing? I live in the midwest for quite some time but was born in Brooklyn before the Dodgers moved away. Hang in there Barbara. Our God is kind and merciful and you have a very famous ancestor in “Marco”