Forum Replies Created
October 9, 2020 at 8:56 am #16509
At night I use CBD lotion on my feet and hands being a totally quadriplegic from ALS help me sleep and releasing me from having a painful night.
September 18, 2020 at 7:00 am #16376
Been on it since diagnosis sporadic limb onset in Jan 2018 (symptoms started Jan 2015 ) was tablet now liquid peg form. No side effects .
January 10, 2020 at 11:24 am #14213
Go to a multidisciplinary ALS clinic
Join an ALS support group (ALS.ORG) plus multiple groups on facebook…but there is more uplifting than interactions with other PALS going thru what you are.
If your female and are used to putting on makeup …get tattooed eyeliner (expensive but worth every penny)
Don’t wait to stop work and start planning, making memories , doing things that you always wanted to do.
Realize the stages of diagnosis (shock, anger,sadness, acceptance)
Most of all you can still live a life with purpose ,..TEAMGLEASON.ORG, IAMALS.ORG, ALSA.ORG
January 3, 2020 at 11:13 am #14157
Hi Michael ,
ALS is the last diagnosis to give. I too went thru 2 spinal surgeries (cervical in 2015 when my hands and arms started to have problems) (lumbar fusion in 2017 when my legs and core started going)…during this time seeing neurologists and having two EMGs on only one hand, then one foot and arm which they chalked up abnormalities to neuropathy . Also seeing a shrink because I knew that there was something seriously wrong with my body. In Dec 2017 after multiple falls I saw a foot dr for brace to help my twisted left foot …who sent me to a neurologist he trusted because my feet where not a common result of spinal stenosis or neuropathy . This Dr did a full body EMG which afterwards told me I had ALS and referred me to a multidisciplinary clinic. On January 2018 got my officially diagnosis of ALS (limb onset). My ALSFRS Score at time of diagnosis was 36 …now in Jan 2020 my ALSFRS is 10 I am a total quadriplegic problems speaking , swallowing and breathing. But I am still here, My suggestion to you is go to a ALS Multidisciplinary Clinic ( I go to Holy Cross Phil Smith ALS Clinic kn Ft Lauderdale FL) can find one on ALSA.ORG (The ALS Association) Ask for a full body EMG if you have ALS which I pray you don’t have ALS but if you do and am a vet…I hear the benefits from VA are amazing for veterans diagnosed with ALS since ALS has now been linked to military deployments
December 20, 2019 at 10:20 am #14066
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!
December 13, 2019 at 11:10 am #14002
Excellent analysis of how we handle our diagnosis . My childhood memory is from horseback riding…no matter how hard you get thrown you dust yourself up and get back on the saddle .
November 27, 2019 at 8:29 am #13896
Steve Gleason and The Gleason Foundation ! Steve Gleason still amazes me how much he has done and continues to do for PALS and his local community. The most inspirational person in my life that I currently live as a ALS quadriplegic.
July 6, 2019 at 11:40 am #12600
YES HARDER FOR PEOPLE TO UNDERSTAND ME/..USE VOICE AMPLIFIER .