Noreen

Danger of syncope (fainting or collapse) is a primary reason for SSDI approval.

I have had the choking on saliva occurence. The docs ordered a swallowing study. Did not show anything, of course.

Hi bella sweetie-

Google+ is still in testing and only available by invite. None of the tech forums have mentioned what your son says happens. google's system is supposed to be so you can address your postings to select circle of friends and those in other circles won't see it. since that is the model, any problems should be worked out in this testing mode. I imagine it will all be fine within the next couple months.

enjoy hugging your doggy and be careful of the heat

noreen

google has a new social media tool called Google+. You have 'circles' of friends, acquantainces, etc. and can decide to share what info with each.

Currently this is in development and only open by invite - much like google mail was originally.

If anyone wants an invite, PM me.

noreen

Wonderful that you have been able to make the connections. I hope they can offer you some sort of treatment.

Lieze-

Regarding the juice issue - it is possible that your mom has their best interests at heart. Many doctors say to eliminate juice and only allow children to drink water instead. Juice has a lot of calories and sugar; it is felt that the children would be better served by eating fruit. Get water bottles for all the kids and have the 2 oldest in charge of one each of the youngest. At 12 and 10 they can certainly keep water bottles filled. The water bottles will cut down on dishes, as well, as I know you complained about the number of dishes they all go through. Having some responsibility at ages 12 and 10 is a good thing for the kids.

You may want to contact your local county regarding getting SSI while you are going through the disability process.

chrissy-

Do you have a connective tissue disorder underlying your POT, such as Ehler Danlos?

My ankles are my worst joints for going out on me.

Welcome back Simmy-

I have thought of you often and hoped you were doing better.

Sad news about your daughter but at least she knows what is going on and you all know the routine far too well.

hope the heat is not too hard on both of you

noreen

i have had fibro since 1990.

sam-

do you have the three or four wheel model? It is wonderful that you have people to take it apart and assemble it for you. I had heard on a few models that people weren't happy with battery longevity - can't go for several hours at a craft fair, etc. - and they weren't able to get add'l batteries. Do you have any experiences like this - good or bad.

Glad you survived the move and things are looking up re: the blood clot.

Don't overdo as you settle in to your new place.

glad you are back amongst us,

noreen

Scooters that have the bigger all terrain wheels will also require a vehicle to carry them in as they do not fold. Power wheelchairs with the all-terrain wheels are also heavy and require a vehicle to hold them. If you are going that route you need to determine whether he needs a seat that reclines or tilt-in-space. Again they all are heavy and require a lift to get them into vehicles and vehicle large enough to handle them. Only you can determine how often it will be used and whether the investment in vehicles is worth it.

Assuming you have a vehicle and are going this route, you can try Craigslist for scooter and then research those you find. You will need to be mechanically inclined to service them or hook up with a local dealer who can sell you new batteries, etc.

If grass and gravel is only a problem once or twice a month, you might consider using a wheelchair for those times or a rollator with 8 inch wheels for outdoor use - one that could be used by him and or pushed by you. http://www.1800wheelchair.com/asp/view-product.asp?product_id=5090

I heard about vibration therapy a few years ago. My understanding is you stand on a base while it vibrates. My problem with trying something like this is the standing.

Do you know of anyone with POTS or orthostatic intolerance who has used it?

Sorry that buying local doesn't seem to be working.

A suggestion would be to try expanding your locale on Craigslist. I was shocked when I found one for 1200 but do not have the support for maintenance, etc.

A cheap alternative would be a cooling vest and a zero gravity chair - not ideal by any means but better than nothing.

It is such a stressful time for you. I hope things work out and you are able to keep the stress low.

Just a suggestion - could you rent an RV? My thinking is you could rest when you need to (and might be an adventure for the kids)

Not sure if this is an option where you are but thought I would throw it out there for what it is worth.

Not to worry. I struggle through brain fog a lot to post. While frustration can be the name of the game for someone with a MBA Magna

cum laude, I would never be able to post if I allowed too much worry (increasing stress) on top of the frustration.

Hm.. can't found anything about NVD there.. it seems that it's something different...

Do you have any trembling or severe muscle contractions? dystonia is a movement disorder and a rather painful one, at that, so I would think you would know.

The references I see refer to neurovegetative dystonia as a menopausal symptom or as a panic attack/anxiety disorder. Could be you have been blown off.

It means that when you are experiencing symptoms, there is a temporary reduction in blood flow (and accompanying oxygen) to your brain. This is why your vision may fade and you might pass out. If you lie down or fall down or just wait a few seconds it goes away. It's common in people who stand up too quickly when their blood volume or blood pressure is too low.

Hi-

You could check out this website http://www.dystonia.us/ and join the forum. If you do have symptoms of dystonia they can help you tease them out. they are a very nice group of people.

Do you think you could get the neuro to read some journal articles on dysautonomia?

lette-

OH Legos. My brain fog was totally focused on food and I could not figure out what lego was.

The way my hands feel today, I wouldn't be able to play with them. Maybe on a good day.

Glad it is helping.

Kayjay said it best. It is a positional thing for many. Raising your arms over your head and bending over are both on the list of things to avoid. Additionally, are you standing at the sink while bending over?

Try lemon juice instead of vinegar as the rinse. I would not think baking soda or lemon juice would cause a reaction on the rest of your body in the shower.

that's very interesting, lotusflower.

tks for posting.

Worried Mom-

I found this last year and posted the link -http://www.travelscoot.com/ There are testimonials where people relate stories about teenagers begging their parents for one after seeing it.

If you were going to do a fundraiser I would vote for this as you are not standing for extended periods, it is light and goes everywhere.

You can tell I have been dreaming about being able to afford one.