beagle
01-14-2004, 09:38 PM
Hi everyone!
I have FSH MD . I have lost a lot of strength in my arms and wrists.
I also have had trouble with my hips. I was wondering does any one else have this also. I thought it would only affect the upper body. I have been trying to talk to people who have md but I was not getting anywhere.
Does anyone go to physical therapy? Would love to hear from anyone
I have FSH MD . I have lost a lot of strength in my arms and wrists.
I also have had trouble with my hips. I was wondering does any one else have this also. I thought it would only affect the upper body. I have been trying to talk to people who have md but I was not getting anywhere.
Does anyone go to physical therapy? Would love to hear from anyone
Sponsor
pcfshhunter
01-15-2004, 04:05 PM
beagle,
I was diagnosed w/ FSH in my early teens. Now 40. Weak upper body but legs are still pretty sound. Legs aren't quite as strong as they were but not to bad off. Beagle how old are you? Male or Female? Does anyone else in your family have FSH? I'm in upstate NY... you? Any hobies? Im an avid outdoors (fish, hunt and dogs). If you have a particular question... ask away. I'm not a doctor, just someone who has lived with FSH and watched many of my muscules disappear for the last 30 years. Hey... but at least were here to @itch about it. Keep smiling.
A fellow FSHer,
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!
I was diagnosed w/ FSH in my early teens. Now 40. Weak upper body but legs are still pretty sound. Legs aren't quite as strong as they were but not to bad off. Beagle how old are you? Male or Female? Does anyone else in your family have FSH? I'm in upstate NY... you? Any hobies? Im an avid outdoors (fish, hunt and dogs). If you have a particular question... ask away. I'm not a doctor, just someone who has lived with FSH and watched many of my muscules disappear for the last 30 years. Hey... but at least were here to @itch about it. Keep smiling.
A fellow FSHer,
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!
beagle
01-15-2004, 08:20 PM
beagle,
I was diagnosed w/ FSH in my early teens. Now 40. Weak upper body but legs are still pretty sound. Legs aren't quite as strong as they were but not to bad off. Beagle how old are you? Male or Female? Does anyone else in your family have FSH? I'm in upstate NY... you? Any hobies? Im an avid outdoors (fish, hunt and dogs). If you have a particular question... ask away. I'm not a doctor, just someone who has lived with FSH and watched many of my muscules disappear for the last 30 years. Hey... but at least were here to @itch about it. Keep smiling.
A fellow FSHer,
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!
pcfshhunter,
I am in my forties also . I am a female. None of my siblings were tested so I do not know about them and my parents passed away. What about you?
Alot of my hobbies I can not do like I want toanymore. tennis, basketball, gardening. I have a dog. I love animals. What about you?
MY legs are not as weak as my left hip. I am having a hard time dealing with the loss of muscle. Do you go to physcial therapy? I love to be outside also, but not in this frigid weather .
I was diagnosed w/ FSH in my early teens. Now 40. Weak upper body but legs are still pretty sound. Legs aren't quite as strong as they were but not to bad off. Beagle how old are you? Male or Female? Does anyone else in your family have FSH? I'm in upstate NY... you? Any hobies? Im an avid outdoors (fish, hunt and dogs). If you have a particular question... ask away. I'm not a doctor, just someone who has lived with FSH and watched many of my muscules disappear for the last 30 years. Hey... but at least were here to @itch about it. Keep smiling.
A fellow FSHer,
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!
pcfshhunter,
I am in my forties also . I am a female. None of my siblings were tested so I do not know about them and my parents passed away. What about you?
Alot of my hobbies I can not do like I want toanymore. tennis, basketball, gardening. I have a dog. I love animals. What about you?
MY legs are not as weak as my left hip. I am having a hard time dealing with the loss of muscle. Do you go to physcial therapy? I love to be outside also, but not in this frigid weather .
pcfshhunter
01-20-2004, 05:33 PM
Hi beagle,
Excellent... Im also a dog lover! My wife and I have 2 English Springer Spaniels.
Are u married/kids? My wife and I decided not to have children as I would freak if I gave them my FSH. After I was diagnosed my family was screened and I found out my dad had given it to me. Where is home? Are you near NY? As far as hobbies, I love the outdoors. Hiking (not as far as before), camping, fishing, hunting. As far as PT, I have a 6-person hot tub in the back yard which helps a lot. All more formal PT has been real frustrating. Heres my work email: [removed] send me an email
Keep smilin'
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!
Excellent... Im also a dog lover! My wife and I have 2 English Springer Spaniels.
Are u married/kids? My wife and I decided not to have children as I would freak if I gave them my FSH. After I was diagnosed my family was screened and I found out my dad had given it to me. Where is home? Are you near NY? As far as hobbies, I love the outdoors. Hiking (not as far as before), camping, fishing, hunting. As far as PT, I have a 6-person hot tub in the back yard which helps a lot. All more formal PT has been real frustrating. Heres my work email: [removed] send me an email
Keep smilin'
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!
lisa45169
02-08-2004, 01:20 AM
COMIC SANS MS5
Hello,
I also suffer from FSH MD. I can not get my arms above my head, have pain in my arms and shoulders. I also have great pain in my back. I have started to stumble and have even fallen. I am only 34 years old. I can not do much of anything that requires use of my arms. My father was diagoinsed back in 1981. It is a very hard thing to deal with. Are you still able to work? :wave:
Hello,
I also suffer from FSH MD. I can not get my arms above my head, have pain in my arms and shoulders. I also have great pain in my back. I have started to stumble and have even fallen. I am only 34 years old. I can not do much of anything that requires use of my arms. My father was diagoinsed back in 1981. It is a very hard thing to deal with. Are you still able to work? :wave:
beagle
02-08-2004, 08:41 PM
COMIC SANS MS5
Hello,
I also suffer from FSH MD. I can not get my arms above my head, have pain in my arms and shoulders. I also have great pain in my back. I have started to stumble and have even fallen. I am only 34 years old. I can not do much of anything that requires use of my arms. My father was diagoinsed back in 1981. It is a very hard thing to deal with. Are you still able to work? :wave:
I am glad you wrote back!!! My left arm became weak last year. But I am right handed. Now my left upper arm is starting to hurt and every time I use it too much it hurts. I am over compensating for my left arm weakness.
My both parents passed away in 1980 and 1981. I do not know which one had it. This year I have been getting fatigued alot so I cut my hours down a little. it has helped. I have been having some personal stress and I think that does not help. My back does not hurt me but my neck gets very tight. i have learned some stretching excercises that help. I have been putting pain relief patches on my arm from any pharmacy and it helps me.
I also took a fall in front of the place where I went for Physical Therapy. I thought that was ironic. after that I have been taking a cane with me. It has helped tremendously. I also have a dog and I walk her and she sometimes pulls and I go flying. Tell me more about how you are handling everything.
look forward to talking to you
Hello,
I also suffer from FSH MD. I can not get my arms above my head, have pain in my arms and shoulders. I also have great pain in my back. I have started to stumble and have even fallen. I am only 34 years old. I can not do much of anything that requires use of my arms. My father was diagoinsed back in 1981. It is a very hard thing to deal with. Are you still able to work? :wave:
I am glad you wrote back!!! My left arm became weak last year. But I am right handed. Now my left upper arm is starting to hurt and every time I use it too much it hurts. I am over compensating for my left arm weakness.
My both parents passed away in 1980 and 1981. I do not know which one had it. This year I have been getting fatigued alot so I cut my hours down a little. it has helped. I have been having some personal stress and I think that does not help. My back does not hurt me but my neck gets very tight. i have learned some stretching excercises that help. I have been putting pain relief patches on my arm from any pharmacy and it helps me.
I also took a fall in front of the place where I went for Physical Therapy. I thought that was ironic. after that I have been taking a cane with me. It has helped tremendously. I also have a dog and I walk her and she sometimes pulls and I go flying. Tell me more about how you are handling everything.
look forward to talking to you
pcfshhunter
02-27-2004, 04:30 PM
Hi Beagle and Lisa,
I'm very glad I have you two to talk with. Thanks.
I think for me the best thing I do to keep "feeling good" is not to dwell on feeling bad. Yes my neck, arms, lower back and sometimes legs ack so much I could screem. Guess what... they probably will tomorrow as well.
What I try to do to remedy this is, I volunteer helping people who have it worse off than me. I volunteer for two physically and mentally challenged youth groups in my area. And I am a member of the PCBA (phyiscally challenged bowhunters of America). Alot of the members of PCBA are quads. Imagine not being able to move at all... or if your lucky maybe just your head. Or, I think of the tragic lose of me best friend a couple years back (car accident). He can't see the sun rise ever again. Man... We have got it made! It makes me thankful I feel as good as you do. And I've also had 5 or 6 (I forget) kidney opperations as well. The good news is. They are both still working.
To answer your question RE: work. I still do. I'm a Art Director/Graphic Designer. When I was younger (early teens) and I was told I had FSH MD I figured I better get into a career that will allow me to sit infront of a computer and not be physically hard to do. But more than likely I will be disabled in a few years. I like to think of it as a poor mans retirement.
Hope this note finds you both healthy, happy and surrounded by the love of your families.
Your friend,
pcfshhunter
---
Take a physically challenged person hunting... you'll both finish the day smilin'!
I'm very glad I have you two to talk with. Thanks.
I think for me the best thing I do to keep "feeling good" is not to dwell on feeling bad. Yes my neck, arms, lower back and sometimes legs ack so much I could screem. Guess what... they probably will tomorrow as well.
What I try to do to remedy this is, I volunteer helping people who have it worse off than me. I volunteer for two physically and mentally challenged youth groups in my area. And I am a member of the PCBA (phyiscally challenged bowhunters of America). Alot of the members of PCBA are quads. Imagine not being able to move at all... or if your lucky maybe just your head. Or, I think of the tragic lose of me best friend a couple years back (car accident). He can't see the sun rise ever again. Man... We have got it made! It makes me thankful I feel as good as you do. And I've also had 5 or 6 (I forget) kidney opperations as well. The good news is. They are both still working.
To answer your question RE: work. I still do. I'm a Art Director/Graphic Designer. When I was younger (early teens) and I was told I had FSH MD I figured I better get into a career that will allow me to sit infront of a computer and not be physically hard to do. But more than likely I will be disabled in a few years. I like to think of it as a poor mans retirement.
Hope this note finds you both healthy, happy and surrounded by the love of your families.
Your friend,
pcfshhunter
---
Take a physically challenged person hunting... you'll both finish the day smilin'!