Calling all pALS 1+ years with ALS: Let’s help our newly diagnosed membersPosted by Dagmar on December 19, 2019 at 4:00 am
If you could go back to when you were diagnosed what would you tell yourself?
What wisdom or advice would you give to someone newly diagnosed with ALS?
MemberDecember 19, 2019 at 3:17 pm
its not the end of the world. take the time to do things you’ve wanted to do – travel to that place you planned to go to, go fishing or to the gun range, spend time with family. I put off doing many of the things I wanted and now 8 months later, I am not able to. Let your friends know you are open to, and welcome visits and help. Don’t deny them receiving the blessing of helping when they offer. My mom’s cousin gave up and withdrew from everyone. She lived 6 months. I can’t help but think attitude makes a difference.
MemberDecember 20, 2019 at 10:20 am
Hi Everyone my name is Susan diagnosed January 2018 limb onset ALS, misdiagnosed for 3 years. Currently a total quadriplegic with peg tube and limited speech and swallowing function , diaphragm muscles FVC 26 on non-invasive ventalation . ALS Advocate, mother, wife and always up for one more adventure while I’m here.
If your newly diagnosed and still can speak well ..voice bank now! It can happen fast to loose the chance. Gleason Foundation may offer grants for Model Talker and it takes a long time to complete.
Find a cause to give you a goal and purpose .
Don’t be stubborn when progression starts to effect your walking. I had so many falls and trips to hospital trying to keep walking with walker most likely only caused faster progression of ALS with multiple concussions.
When you stop working if your not a vet or has a long term disability insurance immediately apply for Social Security Disability(5 month wait) and Medicaid for long term care (if you qualify takes even longer).
Caregiver from Agency don’t be afraid to ask for new one if you don’t click..it took me two agencies and 6 aids to find one that sincerely cared about my well being with ALS .In advanced stage like me they will be feeding , bathing, toileting and dressing you.
Go right away to a multidisciplinary ALS Clinic. Find a ALS Association (or other ALS) support group
Enjoy and take in those small precious moments of joy (laughing with friends and family,seeing a beautiful sunset, eating your favorite food , watching a beautiful bird take flight , when your dog or cat nuzeles up to you, the smiles of joy on children’s faces.
Remembering you are beautiful and loved even in your darkest hour. You are a ALS Warrior hear you roar!
Deleted UserDeleted UserDecember 25, 2019 at 2:41 pm
I’m very pragmatic about ALS which I’ve been living with for 13 years since it really hit me hard. I had some symptoms in my 30’s and 40’s, but not as severe as this 13 years ago. I lived with it for the first 5 years without seeking a diagnosis, since I already experienced it and I knew from experience that the medical profession would be of little help in dealing with it. I met with a new (to me) primary care doctor who I was impressed by and she ordered the routine of tests to rule things out. Then I met with a very knowledgeable Neurologist twice, and he made a preliminary diagnosis of ALS which was confirmed with an EMG performed by a different Neurologist that manages two ALS clinics. I had extensive blood work, MRI’s, EEG, and sleep studies. Since then, I have been feeling positive about being able to live with it, at least for awhile. I was diagnosed in October 2012, and I wasn’t positive I would last through 2013. Now it is almost 2020. None of us want to die prematurely. In my case, I was primarily UMN with limb onset, which typically has a better prognosis. I have since lost most of speaking ability, but still do limited walks with my AFO’s on, in the house. I have sleep Apnea and use a VPAP at night. I eat by mouth most things, but avoid some things.
MemberDecember 26, 2019 at 9:55 am
Good Morning Dagmar. I read your column every week and as well as the other columnists for the last couple of years. I have never written until now. I am 58 yo and was formally diagnosed with ALS on May 22, 2018 although onset was August 2017. I twisted my right ankle as I ran down the stairs and since I was active, I thought it was just that from running down the stairs. In February of 2018, while on vacation in the Dominican Republic, I developed rt drop foot (didn’t know what it was at the time). My thoughts were when I twisted my ankle in August and since I never went to doctor, it never healed correctly and now something was really wrong because I didn’t check it out. Came home from vacation, visited orthopedist who took an x-ray which showed nothing and sent me to PT. PT told me to get an EMG after 6 weeks of no improvement. Fast forward, to other doctors and many blood tests, MRI’s, etc. resulting in ALS diagnosis. Right now, it’s only in my legs. When I was first diagnosed, I was so angry and had meltdowns probably 2-3 times/week. I was active, went to the gym at least 3 times a week, watched my diet, ate very healthy, a non-smoker and vitamin taker, drank alcohol socially (glass of wine) and cooked healthy meals 6 days a week. I really thought because of all this, they got my diagnosis wrong. And how can I have ALS when my sister who is 14 months older than I, has MS?? It’s impossible. WRONG! Unfortunately, they weren’t wrong. The best advice I can give anyone who is new to this horrible illness is the advice that was given to me by my wonderful therapist. Live, do, experience, all that you can now instead of feeling sorry for yourself. You have a right to be angry. Be angry for a few minutes of the day but move on because there will be a time when you can’t do what you want and you will wish you had when you could. That was the best advice!! I remind myself of that everyday. I’m still really angry and I’m still in disbelief. But I’m trying to do things that I enjoy. I’m also lucky enough to still be working which I know helps my mind which is so important in this journey. Read, travel, spend time with friends/family. Do what makes you happy, it’s important to focus on the joy not the sorrow. Sending prayers to pALS and their caregivers!
MemberDecember 26, 2019 at 11:32 am
Thank you all, especially Wendy for your words of wisdom. As many have experienced, after many not-helpful MD assessments, I was diagnosed in 08/19; onset 02/19, limb onset. After reading Dagmar’s story and column contributions, I am convinced attitude has the biggest impact on longevity. And I as every other PALs truly struggle with that. I try very hard to live in the moment, but anything very trivial triggers thoughts of what was and what will be.
I am still very physically active and continue to work full time. My husband is my greatest coach, but also understands my momentary fits of anger and despair. Working in healthcare, one of my biggest frustrations is seeing all of the remarkable accomplishments that are being made in other disease research, yet ALS continues to be stagnant in treatment and no foreseen cure. Yes, there is hope on the horizon; however the disease process continues.
I will keep your advice in mind: get as much out of every moment; surround yourself with positive, understanding people; and keep moving.
Deleted UserDeleted UserDecember 26, 2019 at 11:56 am
Some of us have a more severe form of this disease than others, and that makes a big difference in outcome. For those of us who seem to have a more chronic form, staying positive is vital. Do what you can, enjoy your life as best as you can. I have never been angry because of this disease. I still enjoy my life, am happy and laugh a lot. You need to be a fighter, be able to resist both mentally and physically. A positive mental attitude I believe is critical.
MemberDecember 26, 2019 at 12:38 pm
As others have said our progression can be extremely different. Absolutely enjoy life as much as you can while you can. Find a good specific ALS clinic to go to regularly. Find your local ALS association. I’m lucky there are good ones locally. For myself, I did try local support group but found it very small and infrequent (monthly). Personally I’ve found that being active on the paitentslikeme site was and is helpful. I can interact and hear the daily experiences of many pALS. I can see what they try and what what they feel works good and bad. I see all range of progressions. It can be scary but having your eyes open is helpful.
MemberDecember 31, 2019 at 2:01 pm
First of all do things you love and continue as long as you can. Second, your real friends will be there for you. Don’t refuse any invitation, they know your limitations and want you enough to help you enjoy whatever you have been invited to.
I keep myself involved, stay active & busy, excercise appropriately, and avail myself of physical therapy each week. I try not to feel cheated and enjoy the life I still have. I hope to keep on keepin’ on till I can’t, whenever that may be.
MemberJanuary 2, 2020 at 6:49 pm
I was diagnosed in Sept 2019. The emotional trivial triggers + anger and despair Cindi Zach mentioned are also very real for me. I am tired of crying silently in the car or late at night so my husband doesn’t hear. Anything can make me cry and I am exhausted from it.
I had to retire early from my job as a teaching RN in infusion therapy because I cannot speak clearly and, with the loss of my right hand fine motor, I cannot teach. My husband wanted me to tell close friends because we are a very social couple. Friends were wondering why we had “withdrawn” and I think my husband needs the support of friends. Social is sometimes hard for me now as I get very fatigued and it is hard to eat socially since I cannot cut food and sometimes choke. I find it baffling how some friends handle this “news” by telling me of their various aches and pains or their relatives with MS or Parkinson’s. Others have been very caring and supportive.
I try to stay focused on the here and now, give thanks for what I can accomplish today and not think about the things I have lost. Since I have minimal lower motor function loss, I exercise a lot. My doctor says I may be creating a “negative energy loss” but it makes me feel better mentally and physically. Twitching is worse when I exercise but magnesium helps.
Thank you for support and tips.
MemberJanuary 13, 2020 at 3:38 pm
Wonderful advice Susan!
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