hello!!!
first things first,this disease is very decieving it can go in either direction,there really is no telling how long the healing process will take,or if its even going to heal to a level that you can work with.its also important to get to a doctor that understands the disease and its process most doctors do not even know what tm is,ive had to educate some of them when ive gone to the emergency room over the years.and most are stunned that a patient is telling them about a disease they dont know about.
another thing is the depression,watch for this because it can hit hard especially if you see no improvment or the symptoms become worse.ive been through all of it,in the early stages of my tm i kept thinking to myself its just a passing thing and i will heal from it and it got to the point where i was falling constantly and my legs gradually gave out to the point where i wound up in a wheelchair.its been 6 and a half years and ive faught it
and the insurance companies.i live with my wife and 3 kids,and my sister and her husband live upstairs from us,but im very independant and wont ask for help unless i need it.the day i lose that independance is the day ill go nuts and need to be locked up.let your mom strive to be that way as much as she can and assist her if she needs it,this is so important to have that level of indep.
fluid problems can also be attributed to the lack of movement of the lower legs as well as the prednisone.that stuff is wicked it drove my bloodpressure and my sugar levels crazy,as well it exposes your immune system to everything.somtimes fluid meds dont work,if this is the case try ted stockings,you can get them at most medical supply stores and they work really well.another problem with fluid pills is you have to have your electrolytes checked constantly to make sure their normal.
spasticity was a big problem i had,the pain used to curl me up into a ball and my
legs would jump all over the place,this is a really gray area because there are so many different meds out there to treat it and each one has side effects,i started out with baclofen and klonopin,which helped to some degree,but 2 years ago i wound up in the hospital for 10 days because the baclofen was causing liver dammage,so i came completely off that and stayed on the klonopin.last year i had a baclofen pump put in and that has helped greatly,but i does not sound like your moms to that level yet.you need to explore this area a bit and find what works for her everyones different.try stretching out the muscles works good also.this will prevent shortning of the muscles as well.keep the upper body worked out ,this is important because the stronger your upper body is the easier it is to move around
with driving i dont,but there are programs that assist with this and vehicles can be outfitted to help.i use an electric wheelchair to get around town and have logged
alot of miles in that thing.but any distance i slide transfer in the car with a slide board.
i hope this gives you some direction,if theres anything else i can help you you with email me and let me know.be supportive of your mom and stay on the list for advice.
let me know how you make out.
jeff
central ny
[EMAIL PROTECTED] wrote:
[EMAIL PROTECTED] wrote:
HI everyone,
This is my first time posting to this group, although I have been a member for a couple of months now. I have a couple of questions I hope some of you can help me with.
My mom was newly afflicted with TM 3 1/2 months ago on May 3, 2006. She was originally paralyzed from the waist down. We are told she is improving rapidly, so we hope it continues. We had a setback. A month ago she blew up with 40 lbs of fluid, which was attributed mostly to the predisone, so she's not walking as good as she was. Luckily now thats starting to go down, and she's been weened off from 40 mg of predisone to now 10 and they want to completley ween her down.
She has just now after 3 1/3 months went home from the inpatient rehab. But she's continuing her PT/OT through home care. We have a couple of questions that the doctors aren't answering, but we are hoping others with the same disease can. They are:
1. How many of you also have fluid problems? Do your legs feel heavy due to extra fluid? I'm on Bumex (duratic) to ge the fluid out. This is what makes her urinate a lot. Does anybody ahve any suggestions in what kind of sheets or other things to use to help this? She does have a vinyl sheet. She has some control, but not completely.
2. How many of you live by yourself without any type of assistant living? If so, what assistant tools do you use (ex. cane, walkers, nothing, etc).
3. What medications do you take to help with the spasticity/pins & needle feelings?
4. Do any of you have jerking movements with your hands?
5. Those of you who are walking with canes, how long did it take you to get there from using a walker?
6. Do any of you drive? If so, do you have driving restrictions?
Thank you very much! We appreciate any feedback/help with these questions.
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