chantell-venter
Forum Replies Created
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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.
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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.
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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.
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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 years and he really helps to manage my condition. If I really can’t handle it anymore I find that anti-inflammatory medicine also helps along with pain meds and yes, my good old wheat bags during the day and my electric under blanket at night. I find that wearing too thick clothes and heavy blankets makes it worse as my muscles then have to work so much harder to do anything. After sitting in my motorized wheelchair for 41 years I have recently also been diagnosed with quite severe osteoporosis because of not being able to put weight on my bones. I also have contractures in my hips and knees and that also adds to the pain. Mostly have pain in my neck, shoulders, back and hips.
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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 genetic disorder’ and does not classify it under muscular dystrophy as the US and Britain does. This means it does not get funded under prescribed minimum benefits but rather comes off from my medical savings plan. Any treatment like physio or assistive devices like wheelchairs also comes off from the savings plan. It’s quite ridiculous actually.
I personally don’t think, and I sincerely hope I’m wrong, that our medical aid companies will cover a lot of the cost leaving many like myself and my sister who both have SMA3 out in the cold.
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Maybe you should try a face shield instead of the mask and see how it goes.
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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.
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Looks like a great package. Unfortunately only available in US. Nothing like this available in South Africa.
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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.
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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.
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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 and freedom the water offers it also helps me to clear my mind. And having a great physio is a big bonus. He is very dedicated and constantly comes up with new things for me to do. At the moment I just get physio on land which also helps but the water is still best for me.
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I am not aware of any Organizations in South Africa that would do something like this.
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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 I am 45 with a mind of my own he still wants to say when I can and can not do things in the cold. It drives me crazy sometimes. He doesn’t realise or doesn’t want to realise that not only will I not get into the pool if it is too cold but my physio also won’t put me into the pool if it is too cold either. He, my physio, knows very well what the complications are when I get sick as he is involved with the treatment to get me healthy again. And we both, my physio and I, know that it takes a while to get me back strong enough to get back into the pool so neither of us will take unnecessary risks.