It’s time to call any friend in Congress and let him/her know that New Jersey cannot ration ventilation care. There is a task force being formed to decide who should receive ventilation care if we run out of ventilators. We need representation on that task force. Here is the article:  … Read more

Ryan, I’ve been teaching on a college level since ’96. You do not need a teaching certificate, but you need at least a Master’s degree. Many colleges are on the look-out for adjuncts. Adjuncts are part-time professors who usually can teach up to three courses a semester (depends on the college) and do not have to be on committees or engage… Read more

In the summer I only teach online and usually one course at a time. I tried to schedule my classes so that I have two days off for doctor’s appointments. Finally, I schedule my papers so that I don’t have too many do at the same time. May I be bold enough to ask, what degree do you have? Are you near NJ? I would love to have you talked to my… Read more

I work as an adjunct at two colleges. There are semesters where I teach 17 credit hours, but I do try to maintain a balance and be very aware of my body’s warning signs. It’s very difficult to find a balance between work and health. However, I do firmly believe that academics is a wonderful job for many disabled. In the four-year college I… Read more

I only use the mask with the cough assist and find myself only using it when I’m sick or have a mucous plug. For the most part, the ventilator seems to work and I take time each evening and often the morning to deeply breathe through that. Knock on wood, I haven’t had any major respiratory issues in almost 2 years since I’ve been using… Read more

Esther, I too have had this problem. I found Lactulose to be the best option.

 

Ryan, Have you used a Portable Lift?

https://www.youtube.com/watch?v=f6SE2i6kfUw

Have you seen real improvement from a daily cough assist use? I was told to use it twice a day, but I have not. My excuse is the time it takes up. Should I make the time? Every evening I sleep with my ventilator using a mask and set on 1250.

DeAnn,  I teach Disability Studies at Stockton University and English at a local community college. The disability studies is a minor that I created and is the first in New Jersey.

Kelly, I tried albuterol through my nebulizer and it makes my heart beat way too fast. I see Dr. Bach the same as here in New Jersey for treating SMA patients… Read more

Yes I take potassium and magnesium supplements plus I’ve had trigger point injections. I can’t take muscle relaxers, so the only pain relief I can get his morphine because I can’t process any other painkiller. I will get muscle “knots” which will actually feel like hard lumps under my skin.

Were you young when you had your luki rods? I was 11… Read more

I have Luki rods. If you never heard of it, it is a treatment for Scoliosis which does not involve spinal fusion, but rather I had to metal bars on each side of my spine which stop the curvature by being wired around my spine like a cage. My pelvis is fused. My muscles are sore a lot and I get spasms which is unusual for SMA.

 

I am 48 years old and have never walked. My physical ability is equivalent to a quadriplegic without the ability to lift my arms or really move my legs. I’m contemplating on trying Spinraza. Has anyone with that much muscle weakness tried it? Did anyone find success, even minor success? To be honest I would be happy if I could just lift my… Read more

It is very easy to clean. The straws come apart and there’s a little brush included that clean them. Thermos itself can be put in the dishwasher.

I have been using Fleximug’s hand’s free drinking mug. This is a wonderful product, which I highly recommend. https://www.amazon.com/Fleximug-Hands-Free-Drinking-Mug/dp/B01735UMAW/ref=lp_13495396011_1_2_a_it?srs=13495396011&ie=UTF8&qid=1533653926&sr=8-2&th=1