[Sheila]

20 years , millions and millions of dollars and still no viable treatment…………..

 

[Sheila]

Nancy, I have been to 3 different clinics, 2 of them are ALSA accredited whereas the one where I currently live is not.  The difference seems to be in the number of “professionals” participating, the current clinic doesn’t have a dietician, occupational therapist or social worker to meet with.  I haven’t found the clinics to be particularly helpful other than I like to hear the areas there hasn’t been progression (although I know where there has and has not been progression, it is my body after all) it feels good to hear it.  I recently attended an ALS conference where I was able to talk with pALS from all over the country, I learned all clinics are not created equally.  Several pALS said they leave the clinic feeling hopeful and with suggestions and/or medications (both prescription and OTC) to try.

To answer your question, yes I would relocate or travel to a clinic where the neurologist doesn’t just measure disease progression, but rather is up to the minute on latest trials and meds that may help, and willing to think outside the box!

[Sheila]

The first pALS I met told me to remember “you’re not dying from ALS, you are living with ALS.”  Four years post diagnosis I am still enjoying life, not the same as if I didn’t have ALS, just differently.  I think it’s important to not allow your mind to take you to the ‘dark side’ but stay in the moment, focus on what you can do, not on what you can’t do.  I realize it’s difficult in the beginning but hopefully will eventually become easier.

Research, research, research!  Find what other pALS have found helpful. I recently attended the ‘Healing ALS Conference’ in SLC, Utah, where pALS shared what has help them in some cases to halt or even reverse their symptoms.  I have been incorporating what I can afford into my regimen and find that I am less tired, less fasciculations, and more energy among other possible improvements.  I suppose some of it could be a placebo effect but I don’t care because I feel better and more hopeful!

 

[Sheila]

I was diagnosed in Nov. 2015, approximately 18 months after actively seeking answers for the “drop foot,” leg weakness, and frequent falls.  I saw probably 2-4 physicians and/or PA’s, and 3 neurologists, had 4 MRI’s and an EMG and still not a diagnosis.  I was eventually referred to Loma Linda University where another EMG was conducted and I was told I have ALS.  I think back to one of the Neurologists I saw, sitting in a chair, telling her my symptoms, unable to stand up from the chair without pushing on the arms, unsteadily walking with definite “spasticity” and she said I needed “lumbar traction, that’ll fix it.”  Knowing what I know now, I think I could have diagnosed myself!  When we talk about awareness for ALS I think that means for the medical community as well.  I have learned that my story searching for a diagnosis is not unusual but rather the norm……………

[Sheila]

I was diagnosed Nov. 2015, shortly after I tried  cannabis for the first time in my life.  I was trying it to help with the anxiety I was experiencing at the time.  Since then I have read of the possible benefits when used in certain proportions of THC to CBD.  I am currently using an edible cannabis as well as CBD oil at night to help with the muscle cramping and sleeping.  I would love to see more studies on how cannabis may help with ALS.

[Sheila]

I have a recumbent bike that I have sort of “jerry-rigged” with stretch bands so I can pedal and do arms at the same time,  it helps get some cardio in as well.  I don’t do too much at one time as it sometimes feels like my legs are more tired for the rest of the day.  I also do stretches to try to keep range of motion for as long as I can.  My balance is terrible, I read in one of Dagmar’s columns about rolling for balance so I have been doing that as well…………..it’s a bit difficult on the bed but I do what rolling I am able, I wish I had started when I could still get up from the floor.