Posted by Dennis P on April 12, 1999 at 11:12:41:
I have several questions I've been pondering the past few weeks as my dad has been suffering through these CH's. If you can answer some or all or just give ideas, I'd appreciate it. I'll number them for easier reference in responses.
Here goes:
1. Do you know of any CH sufferers that have never touched alcohol? It seems to be a trigger, and I wondered if anyone has CH and hasn't touched the stuff.
2. Does anyone here have a hot tub that they use on a regular basis? I know they are proven to increase body temp. and circulation, so I wondered if regular use may help as a preventive measure.
3. Those of you that can not lay down: How do you keep from collapsing from exhaustion from standing for several days? My dad can't sit or lay down during attacks, so if they last several days, his back and legs start to give out. Is there a harnass device available? I know vet's have them for horses that have foot injuries to take the weight off the feet.
4. Are there any physical support groups exclusively for CH sufferers? My wife and I were discussing the fact that any good samaritan would volunteer time to comfort a CH sufferer. I've seen several on this site that say they are "going through this alone". How would one get a support group started so that people are aware and can help if needed?
5. Does anyone have any knowledge of specific grants that could be applied for to defer some of the costs associated with CH's? I have a good friend that has extensive grant-writing experience who would gladly apply for grants to help all of you defer the costs and get the meds you need. (and not have to sell your belongings to do it)
6. Has anyone here started a network of physicians that are experts in dealing with CH's? It seems to me that a good physician is one of the keys, and I was wondering if people here have shared physician names. I saw that someone on here mentioned that their Dr. wouldn't even prescribe O2 for them. I would think a qualified physician that understands the severity of these (insert expletive) would fax a prescription for O2, even if it is across seas.
7. Has anyone invested in or heard of an 02 tank that will produce and refresh its own new O2 supply? Do these tanks give the recipient 100% 02?
8. Is there any legwork that I personally can do for any of you? I spend a lot of time on the internet, and of late, esp. searching for info on CH's. If there is ever anything you'd like me to research, please do drop me an email.
Well, I think that's about it for now. I know I have several more questions, but I guess I'll save them for another time.
I want you all to know that I pray for you EVERY night. Our whole church and high school FCA also are praying for you. So you are not going through this alone!
Praying for a pain-free day for all of you!