Actually Houston Methodist Neurology suggested a diet with high calories and stressed the importance of not losing weight. My diet includes cottage cheese, eggs, chicken, vegetables, ice cream, peanut butter and eggs and my weight has remained stable for nearly three years. The disease continues to be slow progression.

I was told Radicava was off my Aetna Advantage formulary in early December. I called Aetna and Radicala and was told to have Houston Methodist appeal the decision by Aetna. Houston Methodist appealed the decision and Aetna approved the medication. CVS Specialty also applied for a Healthwell Grant which has been conditionally approved to pay… Read more

I try to make as many modifications as I can to continue to do as much as. I can. Use grocery cart to support myself in store rather than scooter cart. Could no longer cut grass so bought Black & Decker Three in One which weighs 9.9 lbs. So patio yard with one hand on rollator and one hand on three and one. Use lighter weight rollator… Read more

Enjoying life the best way I can. Having less anxiety and putting myself in God”s hands. Thanking God for my family and friends and the fact I have slow moving ALS and I have almost 3 years where the disease is moving slowly. Every day is precious and tomorrow is not guaranteed so enjoy every day my blessings.

As long as I can get to a shopping cart nearby by holding onto the car and reaching for the grocery cart, I prefer shopping in person. However, this is getting more difficult as the disease progresses as I am able to walk less and less steps with a Cain and am relying almost entirely on a rollator. I am old fashion and enjoy the interaction. … Read more

I prefer to be overheated. I seem to have more aches and pains in winter. In addition, since I have an AFO. A knee brace and an ankle brace it is much easier to put on my equipment with shorts on than over pants or sweats.

Yes. I have lower leg weakness in both legs. I am wearing a walk on AFO on the left leg for foot drop and an ankle AFO on the right side as my right leg is now getting weaker. I have a brace on my right knee because I have a bad right knee that can not be operated on because of ALS. I am still using a European Style Rollator at all times… Read more

I purchased a Sprint Drive Collapsible Rollator. You pull up the handle to get into tight spaces. It is also much easier to store by collapsing and lowering the handles. It has 7 height adjustments. The downside is it is not built well. The screws have come loose and need replacement. Houston Methodist recommended a Drive European model.

Don”t Let The Old Man In

I believe the Radicava ORS is great! CVS Specialty delivers to my house on dry ice. Mitsubishi Pharma provides a schedule on what days to take. Take in morning 10 out of 28 days. Try Healthwell for grant. Covered by Medicare. Max out of pocket for all catastrophic drugs I understand has been reduced from 5 percent to $8000 this year and… Read more

I recently went to Houston Methodist Neurology and was advised to keep taking but once per day rather than twice due to stomach upset.