Anyone With Aag Use A Wheelchair?

[diabeticgonewild]

Ok, I have never actually passed out from AAG or orthostatic hypotension, but for the past month, 90 percent of the time when I get up and I do not wear compression garments, I basically get the pre-syncope "blindness".

I usually wear compression garments, but it is really hot in the South. I wear the Mediven brand hose, in their Plus series, 40-50 mmHg compression. I also wear the Design Veronique brand, non-zippered body girdle, Style # 1653.

I also still sometimes get pre-syncope "blindness" even if I am wearing both garments. (I always wear both.)

I have not progressed much from treatment. I still spend 20+ hours a day in a recliner and I stand up for 30 minutes a day at most. This has been going on since about February, although most of the past year has been this way. I really want to get back in school, and I think this would be a good idea, along with a powerassist for the chair.

If you were me, would you consider a wheelchair at this point of time?

[CarrieJessica]

I am currently using a power chair (manual pushed my BP and HR too high). I am in the hopes my insurance will help with the cost. I don't want to become deconditioned but am tired of not doing anything with my family.

[jpjd59]

If it would allow you to go to school and allow some "normalcy" in your life, I would say that it would be a good thing.

[E Soskis]

I say do whatever works! If you need a power chair or wheelchair, then go for it! AAG takes away most of your normal life so you might as well do anything you can to improve how you live and function.

[diabeticgonewild]

Yeah, I don't think I have anything to lose by asking my doctor. I will bring it up next appointment. Hopefully this will help me get back in to school.

A powerchair would be difficult to use without relying on paratransit. You would have to get a handicap-accessible vehicle because you need to have a lowered frame and bottom on the car, so the powerchair can fit in to the cabin of the vehicle. In addition, you would need tie-downs, because if a car accident ever occurred, you would have a 200 lb projectile in the back seat of the car. Also some sort of lift or ramp would be needed.

Accessibility is more of a problem with a powerchair, although I think it would be the best thing possible for me. I could also recline.

I guess I will settle for a manual with a power assist. At least I could get around without accessibility challenges. I just don't know how to ask my doctor for a power assist. If you have any ideas, please tell me. Here is an example of a power assist on the back of a manual wheelchair.

I guess tachycardia and fatigue would be a starting point for getting a prescription from my doctor for a power assist, such as the Smartdrive. If anyone has any suggestions to suggest to my neurologist, please mention them. I would imagine that obtaining it during a follow-up after getting a manual wheelchair would be most realistic.

[looneymom]

Have you been to a physical therapist for an evaluation? When my son was diagnosed with POTS in 2011, he was unable to walk then and fatigue was a huge issue. Fatigue is still a big issue. However, when he got the double round of flu in January, it effected his strength in fingers, arms, shoulders, and chest area. He does exercises everyday to work on getting the strength and endurance. This affected his ability to be able to push a manual chair and wore him out after just a minute of trying to push the chair. The same was true when he was able to walk for 10 minutes and then had to rely on a manual wheel chair to get around. For some reason, he has not been successful getting this strength back. Because our physical therapist was able to see all this from the very beginning, she was able to write a letter of medical necessity about my son's health condition to our insurance to justify a power wheel assist wheel chair was truly needed. Since he's gotten his chair, he enjoys going for strolls in the morning sun. It's made a huge difference for him and mobility. His prescription came from the cardiologist that diagnosed POTS. He has an appointment to see him next week to run the blood work for AAG. I would not see why they would deny a wheel chair. If insurance does not understand what AAG is, you may need to get the doctor that diagnosed it to write the prescription. Fight for your mobility, you deserve it.

[diabeticgonewild]

Have you been to a physical therapist for an evaluation? When my son was diagnosed with POTS in 2011, he was unable to walk then and fatigue was a huge issue. Fatigue is still a big issue. However, when he got the double round of flu in January, it effected his strength in fingers, arms, shoulders, and chest area. He does exercises everyday to work on getting the strength and endurance. This affected his ability to be able to push a manual chair and wore him out after just a minute of trying to push the chair. The same was true when he was able to walk for 10 minutes and then had to rely on a manual wheel chair to get around. For some reason, he has not been successful getting this strength back. Because our physical therapist was able to see all this from the very beginning, she was able to write a letter of medical necessity about my son's health condition to our insurance to justify a power wheel assist wheel chair was truly needed. Since he's gotten his chair, he enjoys going for strolls in the morning sun. It's made a huge difference for him and mobility. His prescription came from the cardiologist that diagnosed POTS. He has an appointment to see him next week to run the blood work for AAG. I would not see why they would deny a wheel chair. If insurance does not understand what AAG is, you may need to get the doctor that diagnosed it to write the prescription. Fight for your mobility, you deserve it.

Thank you, looneymom

I have never been to a physical therapist. I could ask for physical therapy when I go to my neurologist in June. My endocrinologist said I lost a lot of muscle mass over the past year due to AAG.

I think I would have a better quality of life with a chair. Physical therapy would probably be a good idea, and a starting point. Where I live, there is a rehabilitation hospital that is in the top 5 in the country. So, who knows, maybe my doctor could refer me to there. They also have a good seating clinic, with RESNA certified occupational therapists.

I think my doctor would write my a prescription for power assist, but I would need to go to physical therapy first.

Good luck with the AAG test. Hopefully you will get the answers you want with the test results.

[Guest mattgreen]

Can you explain what you mean by pre-syncope blindness? Thanks

[diabeticgonewild]

Can you explain what you mean by pre-syncope blindness? Thanks

It's where you become so hypotensive that blood flow to your optic nerve is decreased. It is like "graying out" or like "tunnel vision" but you go completely blind from it.

Sometimes it happens when you "stand up too fast".