|
BeckerMD Forums |
|
|
|
|
|
|
|
|
|
|
Subject :Eric Powell..
2009-07-09 06:05:37
|
|
|
| oriolesfan |
|
| Newbie |
 |
Joined: 2009-07-09 05:29:07
Posts: 1
Location: |
|
|
|
|
|
|
Name: Eric Powell
City: Ellicott City
State: MD
Country: US
Year of Birth: 1984
Onset: 6
Diagnosis: 7
Deletion:
Frame:
Cardiac Problems?: Y
Ambulatory Problems?: Y
Respiratory Problems?: N
Entry Date: JULY, 2009
When I was first diagnosed with BMD, I had some trouble keeping up with the other kids but was able to do most everything a normal child does. Over the years though, and especially in the past 1 or 2 years, it has gotten more and more difficult for me to get around. Currently, I don't have too much trouble getting around my house, but outside of the house it has gotten to the point where I am often unable to get up without assistance. Walking on anything other than a flat surface is extremely difficult for me, and I cannot climb any stairs that are steep, narrow, or have no railing.
The biggest problem I have is that I tend to get frustrated when I have trouble doing stuff. I know this only makes it worse, but it's hard for me to not feel this way. Fortunately I am still able to get around for the most part without using a wheelchair or any other assistive device, and I have never seriously hurt myself when I've fallen. I have used a wheelchair occasionally, but I do not own one yet. I feel like in the next couple years it will become necessary for me to start using a wheelchair regularly, at least when I leave my house. I am almost looking forward to using a wheelchair because it will make things easier, but at the same time I am strong-willed and want to continue walking for as long as I can.
I have not really connected with other people with muscular dystrophy in the past, so I decided it would be a good idea to sign up on here and hopefully get some tips from other users. I am especially interested in getting advice from people with BMD who are already in wheelchairs, since I will likely have to start using a wheelchair pretty soon. |
IP Logged
|
|
|
|
|
|
Subject :..
2009-07-09 12:21:53
|
|
|
| cmorz |
|
|
| Experienced |
 |
Joined: 2008-12-06 13:48:06
Posts: 30
Location: |
|
|
|
|
|
Hi there,
I'm a mom to a 6 year old who was recently diagnosed. I don't have the experience with MD that you are looking for, but I just wanted to say hello. You sound like a very strong person. I hope my son copes as well as you have. Right now, he is saying things like "I want to cut off my legs because they don't work!" Even though I am not experiencing the frustration that you described, I see it in him.
You will meet a lot of nice and informative people on here! They helped me through the dark days of the initial diagnosis and I'm sure they will have valuable tips for transition, etc. Thanks for posting your story. It was inspirational for me to read it. Take care, Leighann |
|
IP Logged
|
|
|
|
|
|
Subject :..
2009-07-09 21:33:29
|
|
|
| Roxanne |
|
|
| All Star |
 |
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
Hi Eric, I just want to say welcome to Beckermd.org. :) I'm Roxanne mom to Nicholas age 9 with BMD. I cannot offer you any tips and don't have the experience you have in dealing with this disease. My son don't have much troubles yet, although he does deal with the frustration of not being able to keep up with friends at this point. He will sometimes say "he hates being this way" He has cried in the past with his frustrations. There are others members on this website that are going thur the same issues as your are so I'm sure someone here will give you the advice you're looking for. Hang in there!
Roxanne. |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2009-07-09 23:33:52
|
|
|
| kgoodfellow |
|
| All Star |
|
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
|
|
|
|
|
|
Welcome Eric
Feel free to poke around and read what other conversations have been going on. Don't hesitate to post any questions, issues, concerns, etc in the patient chat room. We're a small group, but we can all relate, so you may get some really good feedback.
I can relate to your stair climbing issues. I also have friends that have been in your exact situation in the last couple of years and they fell several times breaking arms, legs, and ankles. So please be very careful, since having an injury like that can really set you back physically while you're recovering. Think about just using the chair when you feel less stable or less confident, so you can avoid these kinds of injuries. You'll be better off in the long run.
Thanks
Kevin |
|
IP Logged
|
|
K. Goodfellow |
|
|
|
|
|
Subject :..
2009-07-14 17:15:23
|
|
|
| nista |
|
| New |
 |
Joined: 2007-02-27 22:28:09
Posts: 19
Location: |
|
|
|
|
|
|
Hi Eric
I can relate to everything you described. I also started using a wheelchair regulary about your age (I am born 1979). Please send your questions/thoughts about this my way and I will try to answer them.
//Niclas |
|
IP Logged
|
|
|
|
|
|
Subject :Re:Eric Powell..
2009-10-12 04:02:02
|
|
|
| Atticusvinny |
|
|
| Newbie |
|
Joined: 2009-10-12 10:50:56
Posts: 1
Location: |
|
|
|
|
|
|
Eric,
I was actually quite nervous about posting here too as it is my first experience ever with these type of forums. After reading your post though I felt the need to because it was almost as if you're going through the EXACT situation I am. I was born in '83 and currently am going through the emotional struggle of whether or not to get a wheelchair. Just like you I feel that it would defintely make things a lot easier but I too am strong willed.
The question I have though is if you've been experiencing this same prob - I have a TON of anxiety when I have to walk up a flight of steps (im hard headed about the wheelchair thing so ive put myself in situations where ive gone to job interviews, houses, etc with steps) and dont really know how to address the situation. Like, sometimes i'll just try to quickly explain to whoever is with me my situation and why it looks weird when I walk up stairs. Im at the point now where I walk up them like a younger child learning to do stairs. (2 feet on the same stair while holding both railings, or leaning on the side with the railing)
Yet, when i'm alone doing stairs for instance, it doesnt really bother me too much mentally, its just something I know I have to do. (Although i kinda have a different technique if I'm alone, i climb em on all fours.)
Anyways, didnt mean to make my first post so huge but I'm just super excited to finally have people to talk to that understand what we're going through :) |
|
IP Logged
|
|
|
|
|
|
Subject :Re:Eric Powell..
2009-10-12 07:11:31
|
|
|
|
|
|
