Hello

jackie · 08-11-2005, 04:25 PM

Hi!

I have been posting in the garden for about six months but have never been in this section. I have Hereditary Spastic Paraplegia. It is degenerative, so picture a slowly moving spinal cord injury. I am still walking with assistance and fall frequently but am finding stubborness is hard to overcome...even stitches haven't fully taught me a lesson. But I really am using my cane or walker more unless I have someone to hang onto. I rarely talk about my problem with anyone outside of my support group but this may be a good opportunity. I need to face facts and get beyond my feelings...I cannot hide it anymore.

Jackie Wellman
www.hoppy.bravehost.com

08-11-2005, 05:21 PM

stubborn but not stupid, eh? I like you already! perhaps we were separated at birth. I, in no way, have to deal with what you are facing right now, but have you ever noticed that folks like us, who can be a tad stubborn over one thing, generally are about most ideas we have?

Can I ask a couple of stupid questions, before I go out and google this thing?
Is it painful? And we are only counting when doing activities you are supposed to be doing..lol

Is it moving slowly enough so that you have time to adapt as it gets worse?

Does it really irritate you when idiots complain about how tough their day or week has been? Because I've got to tell you, everytime someone here post something like you just did, I feel like a total moron. There you are, quietly doing what you have to do ,to get by day to day. And my whole drive home I am ranting in my head because I have to do laundry tonight..

diane

chonsigirl · 08-11-2005, 05:29 PM

Hi Jackie! You are very brave to talk about it, it can only help you. I am not physically challenged, but my husband is. I wish you luck!

jackie · 08-11-2005, 05:54 PM

Dianne & Chonsigirl,

Thankyou for the welcomes. I will try and answer your questions now. For one thing, since it is rare, the only place to find information is to search the internet. I had to go through three doctors before finding one who new about HSP. Go to www.sp-foundation.org

It is more annoying than painful, although there is a lot of muscle cramping. Back and hip pain from walking funny. I look a little like Frankenstien when I walk...my legs don't bend too easily. It is actually in the nervous system not the legs. It affects my voice and my hands a little but mostly bellow the waist.

Yes, progression is slowly, although it seems to speed up and then slow down an speed up again...annoying. It is different case by case where progression will stop. I have probably had it forever but was diagnosed eight years ago. When I started tripping alot for no reason or so I thought.

No, I do not get irritated when people complain, I just think, "Ha, if they only knew how lucky they were!"

I rant about laundary I have to do also!

My website has a link to ezine articles that I wrote and there is one on HSP.

Jackie Wellman
www.hoppy.bravehost.com

mominiowa · 08-11-2005, 10:15 PM

Ohhhhhhh

welcome Jackie!!! Yeah!!! Another Iowan!! Wolverine will be so happy! I wish you well- My sis has MS and I see a lot of her in your post..I know it is a different disease but the walking problems and falling sounded so real...There are several people here with different disabilities and we love 'em all so ~~welcome welcome~~

actionfigurestepho · 08-12-2005, 04:57 PM

Jackie, you are going to find that everyone on this forum is extremely supportive!

I was reading an article the other day about how they are using a certain prescription drug (and I can't remember which one it was) to treat nervous system disorders...do you know of any reserach going on that might help your condition? Is this something stem cell research might help?

jackie · 08-12-2005, 06:39 PM

Thanks for the welcomes. An Iowan and an actionfigure! Wow!

There is no medicine for this specific disorder but they are trying. Yes, stem cells are a possibility so I bet you figured out that I do not want the power of veto used!

Jackie Wellman
www.hoppy.bravehost.com

jackie · 08-20-2005, 06:07 AM

For anyone inerested in learning about stem cells, got to my website. There is a link there for ezine articles I wrote. There is an article there about stem cells.

Jackie Wellman
www.hoppy.bravehost.com

actionfigurestepho · 08-26-2005, 10:23 AM

I firmly believe in stem cell research!
We've been given this gift, this key to unlock so many medical mysteries and treatments, it would be such a shame not to use it!

08-11-2005, 04:25 PM	#1 (permalink)
jackie Member Join Date: Mar 2005 Location: West Des Moines, IA Posts: 76	Hello Hi! I have been posting in the garden for about six months but have never been in this section. I have Hereditary Spastic Paraplegia. It is degenerative, so picture a slowly moving spinal cord injury. I am still walking with assistance and fall frequently but am finding stubborness is hard to overcome...even stitches haven't fully taught me a lesson. But I really am using my cane or walker more unless I have someone to hang onto. I rarely talk about my problem with anyone outside of my support group but this may be a good opportunity. I need to face facts and get beyond my feelings...I cannot hide it anymore. Jackie Wellman www.hoppy.bravehost.com
Local Time: 09:14 PM Local Date: 12-03-2008

08-11-2005, 05:21 PM	#2 (permalink)
flopstock Guest Posts: n/a	Re: Hello stubborn but not stupid, eh? I like you already! perhaps we were separated at birth. I, in no way, have to deal with what you are facing right now, but have you ever noticed that folks like us, who can be a tad stubborn over one thing, generally are about most ideas we have? Can I ask a couple of stupid questions, before I go out and google this thing? Is it painful? And we are only counting when doing activities you are supposed to be doing..lol Is it moving slowly enough so that you have time to adapt as it gets worse? Does it really irritate you when idiots complain about how tough their day or week has been? Because I've got to tell you, everytime someone here post something like you just did, I feel like a total moron. There you are, quietly doing what you have to do ,to get by day to day. And my whole drive home I am ranting in my head because I have to do laundry tonight.. diane

08-11-2005, 05:29 PM	#3 (permalink)
chonsigirl I think, therefore I post Supporting Member Join Date: Mar 2005 Location: Nirvana Posts: 28,697	Re: Hello Hi Jackie! You are very brave to talk about it, it can only help you. I am not physically challenged, but my husband is. I wish you luck!
Local Time: 10:14 PM Local Date: 12-03-2008

08-11-2005, 05:54 PM	#4 (permalink)
jackie Member Join Date: Mar 2005 Location: West Des Moines, IA Posts: 76	Re: Hello Dianne & Chonsigirl, Thankyou for the welcomes. I will try and answer your questions now. For one thing, since it is rare, the only place to find information is to search the internet. I had to go through three doctors before finding one who new about HSP. Go to www.sp-foundation.org It is more annoying than painful, although there is a lot of muscle cramping. Back and hip pain from walking funny. I look a little like Frankenstien when I walk...my legs don't bend too easily. It is actually in the nervous system not the legs. It affects my voice and my hands a little but mostly bellow the waist. Yes, progression is slowly, although it seems to speed up and then slow down an speed up again...annoying. It is different case by case where progression will stop. I have probably had it forever but was diagnosed eight years ago. When I started tripping alot for no reason or so I thought. No, I do not get irritated when people complain, I just think, "Ha, if they only knew how lucky they were!" I rant about laundary I have to do also! My website has a link to ezine articles that I wrote and there is one on HSP. Jackie Wellman www.hoppy.bravehost.com
Local Time: 09:14 PM Local Date: 12-03-2008

08-11-2005, 10:15 PM	#5 (permalink)
mominiowa Senior Member Supporting Member Join Date: Feb 2005 Location: Well..... if this is HELL?? Posts: 1,552	Re: Hello Ohhhhhhh welcome Jackie!!! Yeah!!! Another Iowan!! Wolverine will be so happy! I wish you well- My sis has MS and I see a lot of her in your post..I know it is a different disease but the walking problems and falling sounded so real...There are several people here with different disabilities and we love 'em all so ~~welcome welcome~~ __________________ Driving me crazy is an art form.. my kids hold the brush!!
Local Time: 10:14 PM Local Date: 12-03-2008

08-12-2005, 04:57 PM	#6 (permalink)
actionfigurestepho Shake your money maker Supporting Member Join Date: Jul 2005 Location: Elyria, Ohio Posts: 1,084	Re: Hello Jackie, you are going to find that everyone on this forum is extremely supportive! I was reading an article the other day about how they are using a certain prescription drug (and I can't remember which one it was) to treat nervous system disorders...do you know of any reserach going on that might help your condition? Is this something stem cell research might help?
Local Time: 10:14 PM Local Date: 12-03-2008

08-12-2005, 06:39 PM	#7 (permalink)
jackie Member Join Date: Mar 2005 Location: West Des Moines, IA Posts: 76	Re: Hello Thanks for the welcomes. An Iowan and an actionfigure! Wow! There is no medicine for this specific disorder but they are trying. Yes, stem cells are a possibility so I bet you figured out that I do not want the power of veto used! Jackie Wellman www.hoppy.bravehost.com
Local Time: 09:14 PM Local Date: 12-03-2008

08-20-2005, 06:07 AM	#8 (permalink)
jackie Member Join Date: Mar 2005 Location: West Des Moines, IA Posts: 76	Re: Hello For anyone inerested in learning about stem cells, got to my website. There is a link there for ezine articles I wrote. There is an article there about stem cells. Jackie Wellman www.hoppy.bravehost.com
Local Time: 09:14 PM Local Date: 12-03-2008

08-26-2005, 10:23 AM	#9 (permalink)
actionfigurestepho Shake your money maker Supporting Member Join Date: Jul 2005 Location: Elyria, Ohio Posts: 1,084	Re: Hello I firmly believe in stem cell research! We've been given this gift, this key to unlock so many medical mysteries and treatments, it would be such a shame not to use it!
Local Time: 10:14 PM Local Date: 12-03-2008

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