-
hopeful
- battlecreek
- United States Minor Outlying Islands
- Share
- Blog Posts
- Discussions (3)
- Events
- Groups (1)
- Videos
hopeful's Discussions
hopeful's Page
Latest Activity
Have you read the article from roger hartmanns opinion of desiree jennings? www.wcnc.com/.../w. I want you to know I disagree w/ you completley. By the way when did you finish your degree as a movement disorder neurologist? I have dystonia and I d...
Sorry Beka I thought you felt it seemed phsycogenic. I so hate that word! The whole thing shes going through makes me so angry. Guess I was venting aimed at the wrong person. Please forgive me.
hopeful
Beka says she trys to refrain from medical diagnoses,but in one paragraph she states (very suggestive of phsycogenic disorder and all experts opinions, she states have not examined her personaly. Were the neurologist in the er movement disorder ne...
WOW! Beka,
I thought if anyone would be on her side it would be all of us. Maybe she didn't get it from the flu shot. But it was john hopkins that said it was from the flu shot not her. They are the ones who diagnosed her w/ dystonia. Her movement...
Hi everyone! Before dystonia I loved to remake and style furniture from garage sales. Can't do that now to much sanding and such. I love to paint birds I was able to do a painting today . Sometimes I can't if my tremor is acting up or my hands fre...
Living with, or caring for someone with Dystonia? Join to share information, resources, and support with others.
Ellen
You seem so educated. I went to your sights very interesting. I go to Dr tuesday I will mention my neck and head to him. Thanks again hope your feeling well. LOVE&PEACE hopeful
Thanks Ellen, I just figured it was part of the dystonia.
LOVE&PEACE hopeful
I get electrical shocks going up back of head like fire works and once they reach destination. They explode and radiate numbness. Sometimes feels like sand runs down the back of my neck.
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
I"m newly diagnosed was diagnosed at UofM in june 09 wasn't explained anything about it went to movement disorder specialist in saginaw aug 18,09. was told had either fragmented torsion dystonia or just torsion dystonia. said if it was fragmented I would notice huge difference within a week of taking depakote ER. Havn"t noticed a difference yet but I'll be on it for a month. He said if it didn't work then it was torsion dystonia and it will progress. I am 37 yrs. been married to a wonderful man for 19 yrs. I am a mother of an18 son who just graduated high school. And a 14 yr daughter who is starting high school this fall. I've worked at the same factory for 11 yrs. I always worked overtime. I love to paint birds and do crafts i love to mow lawn and even help hubby stack wood for the winter. But last march everything came to a hault I havn't worked in 6 months walking is very difficult have dystonia from my eyes to my toes all come and go except walking stays affected always. Trying to stay positive and not sure what to expect. My short term disability runs out sept 13 and need to figure out abou t disability issues. My hubby lost his job and were not going to be able to cover the cost for cobra for very long. Very glad to have found this message board knowing I'm not alone is very comforting.
Comment Wall (6 comments)
- At 9:35am on October 15, 2009,
anastasia said…
- Hi Hopeful,I miss gabbin with you too!I'm soo glad your daughter had a great time at homecoming,that's exactly what we are going thru now,my daughter needs(get this)hair done,make-up done,she wants nails and pedicure,a fitting for her waist as the dress looks fine but always pickin,new jewerlt and we are holding the party after the homecoming thanks to my daughter telling everyone before my husband and I knew!She is a total princess and she's starting to work on my every last nerve,ha ha!I did see the show,although I would have been more grateful about the DBS,she didn't seem soo excited,if someone told me I would be some what normal again and would have been crying soo happily:)Have you gone to doc recently?I went 2 weeks ago he's sending me for emg and nerve conduction studies then the all day testing for neuro behavioral sciences where they check your memory etc,he uped my sinemet,but he looks soo confused about my case,he didn't say much when I was there,my rheum. actually told me more this week than the neuro.I did make appt. in NY with Dr.Tagliatti he is supposed to be wonderful,big write up in the papers here how hw helped a young girl walk again thru DBS,then my brother-in-law called and said
I fit the criteria for DBS at Cooper hosp. and wants me to call them(he's an ER doc)now I'm really confused,wouldn't you be,but I am ever so grateful to have a family that cares enough,they will come with me no matter where:)Did you here Alex say she saw over 20 neuro's?Sorry so long and I truly hope you are well,please let me know how you are and what you thought about the show,k!!
- At 11:26am on October 11, 2009,
karen said…
- hi hopeful..once again i have to apologize for not getting back to you before now..i have been really struggling with all these new things that dystonia has thrown at me..which at first i thought were just going to be a pest for awhile then go away as sometimes new things do but unfortunatley they have stuck around and i have had to start learning to readjust my life again..
i not on the computer much anymore..my left eye has become effected and it has left me with double and sometime triple vision!!..which makes reading and typing kind of hard to do..but today looks like it's going to be an ok eye day so i thought i would answer your email before i try and tackle a few others
how did your follow up visit go with dr. mrihda go?..good i hope..and i hope that he will be able to help find a treatment plan that will help you and hopefully keep your symptoms controlable..did he decide which kind of dystonia you have?..i was suppose to go and see him the day after you were there but had a bad night and had to cancel..have yet felt up to making the 45 min. trip..will probably wait until i have to go over to have my baclofen pump refilled since the dr. that does that is in the building right next to dr. mridha's..it makes it so much easier to do them both on the same day rather than make two trips..i can imagine that the trip that you have to make is pretty hard on you since you come from the other side of the state!!..wouldn't it be great if we could just close our eyes..click our heels and be whisked off to his office!!
i hope that your doing good and that your symptoms aren't keeping you down and missing out on life..take care and let me know how your appointment went..i will do my best to answer you back right away!!
keep strong!!
karen
- At 8:37am on September 23, 2009,
anastasia said…
- Hopeful,that's so funny cause my daughter is going to homeconing oct.24th,she reminds me everyday,have to go tanning,then she said she can't buy a dress in new jersey where we live,needs to go to another state so nobody will have the same dress,make my hair appt,my God what will her wedding be like,ha ha!She's a little spoiled but my sisters help me alot with taking her,I'm so lucky!!!!!I'm glad the doc is helping you,my husband always aks me why I want to go back to PT,when I would leave I would be so crippled,full spasms and alot of pain,I'd be in bed the rest of the day,althonk just sitting at though I think it's better than just sitting at home.My PT girl was great but right I needed more medical management,she said conservative therapy can only do so much.I saw ENT doc last night and he said the Pittsburgh area is known for brain problems,my husband and I are going to go once SS comes in,really excited to get more help,ya know.Don't worry about SS it takes a long time but with the right lawyer it will be ok,I had binder and binder and my neighbors mom works for SS hearing dept and she said they are terrible they are just to big now,I swithced to a private The biggest thing with SS is to have documentation from your docs they have to be on your side,everyone tells me that and it's so true.Keep up your great spirit you sound like an awesome mom,the kids always need us:)Hope to gab with you soon just call or e-mail if you have any questions,it is soooo nice to have you as a friend,thank God I'm not the only mom with dystonia.
- At 5:57am on September 11, 2009,
anastasia said…
- Hopeful that's so funny my boys are 19 &18 yrs old and my daug is 14 too!Yes your right it is so hard to realize this is here to stay,my mom always tells me it will go away and I tell her to stop it makes it harder for me to accept,to hopeful.I read too,Harlan Coben is my favorite author,there like watching a great movie except were reading,it is a great escape!!!!You have to read firefly lane by Kristen Hannah it's adorable it's about 2 best friends:)Yes I applied for SS but denied 2 times waitinf for hearing,I worked 16 yrs in medical feild,had a lawyer,to much paper work and I mess things up lately,he said it's because I'm so young,they give you a hard time unless your illness is fatal(real nice,right).I hired my 2nd lawyer last week,maybe he'll be better,we are not survivng with just my husband working,so broke:(My one sister is wealthy so she gives me a few hundred dollars every month and my other sister does food shopping once a month and it is sooo humiliating,I never needed help.My mom helps if the kids need something and so far had 2 bankruptcy's,the funny thing is we had no credit cards it was really the mortgage and car payment,elect,the usual.I feel so gulity but I can't drive because I have intention tremors and spasms espec. in my legs and i'm bent over,need whellchair for any distance,and the pain is a whole other story.My family are all docs and nurses so they are really upset with my doctors,i'm better with sinemet but once I reached a certain point the med did all it can do.I think it's ahrder on my kids,they are scared,they never wanted for anything and now they had to get jobs while in college,feel soooo bad:(I wish you much luck,knowing me I just had bad luck with SS ya know ha ha!So nice to chat with you,stay well I'm so glad we meet:)Have a good day!
- At 7:42am on September 10, 2009,
anastasia said…
- I would love to have you as a friend too,thank you sooo much.Yes I am amrried with 3 beautiful children and thank God they are older because I'm not much help now a days to them,they actually care for me which is not the way it should be.My dytonia hit me too like a brick,at first I was told it was all stress,of course,but it wasn't the case.I too worked full time in medical feild until this struck,it's so lonely being housebound,used to doing everything myself,it's a hard life we have.Please take care and thank you again for responding,it's always nice to know that yes we are not alone,we have each other!Do you have kids and a husband,how do you handle home life,or people staring?
- At 12:56pm on September 3, 2009,
dystojen said… - Dear Hopeful-I was blatantly affected when I was 49 when almost being hit head on while I was on my way to work. I had telltale signs growing up, according to my neurodocs when I gave them my history- lots of neck pain w/ pulling to the right, walking on the outside of my feet because my feet were turning in somewhat, and occasional stutter-like speech. Since I signed up for this group, my husband divorced me, telling he was always afraid to touch me because of my dystonia and the pain it put me in. Lame excuse- huh! Then I went through a few months of even more dystodistress because of the divorce, and now happy to say I have gotten through this with my faith, family, & friends. l'd love to hear back from you.
© 2009 Created by Marie
