I’m taking Xanor in the morning to calm me down and Serlife at night which is an antidepressant. I have anxiety and depression. These medications made me feel a bit sleepy for about a week but after that week I’ve had no other side effects. I didn’t have any side effects affecting my SMA. I also see my psychologist every 3 weeks. All of this… Read more

I wear 3/4 leggings and a spaghetti strap top for aqua therapy.

If the therapist knows what they are doing the pool chair shouldn’t be a problem. Maybe request that they add extra time to your session to figure out the transfer for the 1st few times.

Have fun.

Hi

I take 50000 IU vitamin D3 (Calciferol or Idexis) once a week. Vit D is important for bone health amongst other things. It helps you to absorb calcium, magnesium and phosphates. Many other biological functions also depends on vit D.

I use Texa Allergy Tablets. It doesn’t cause drowsiness and you only need 1 tablet a day. I stay in South Africa so I don’t know if it is available where you are. ‘Texa Allergy Tablets contains 10 mg cetirizine dihydrochloride’ copied from the leaflet for the active ingredient name.

I find that swimming and exercise in a heated pool in summer months help a lot for the tightness and pain in my muscles. I go to physio once a week and it helps me. In winter when I can’t swim my physio uses laser, ultrasound, pressing on the pressure points, dry needling and kinetic strapping to ease my pain. I’ve been going to him for 5… Read more

I realize that the research costs a lot of money but the price of Evrysdi is going to make it really difficult for many to afford this breakthrough treatment.

I stay in South Africa and except that it is not available here yet I would never be able to afford it.

Currently in South Africa our medical aid companies see SMA as ‘another… Read more

Maybe you should try a face shield instead of the mask and see how it goes.

I also use a collar in the pool at my PT. He has me sit on the bench in front of the inflow of the pool to practice my balance. When this gets too easy he moves the water around me to make it a bit tougher.

I am not aware of any Organizations in South Africa that would do something like this.

Looks like a great package. Unfortunately only available in US. Nothing like this available in South Africa.

I have also had the flu vaccine for the past 3 years. The first time I had the flu vaccine I also had a pneumonia vaccine which lasts for 5 years. This combination was recommended by my doctor and it seems to work for me.

I sleep on a large towel (bath sheet) which my caregiver pulls to turn me. It works the same way as the draw sheet used in hospitals. It is just important to straighten it properly after each turn to prevent pressure points.

At home I use a patient lifter with a sling. My dad made me an adaption that attaches to the hoist at the pool so I can use the same sling to get in and out of the pool. The hoist uses a hydrolic mechanism that my physio operates. Works very easy and comfortable for us.

Mike my parents, especially my dad, is very protective of me. Even though… Read more

I also enjoy aquatherapy on a weekly basis. Now that it is winter in South Africa it is on the back burner for the moment. Although the pool is heated and indoors the change rooms are not accessible so I cover up well and dress once back home. Winter weather does nt allow for this. Can’t wait for warmer weather. Not only do I get the exercise… Read more