anastasia's Discussions
New to forum,I have generalized dystonia,would love advice from you all!:)
Hi Hopeful,I missed gabbin with you too:)I'm glad to see your on the right meds,it's nice to hear you have docs that listen!My mom says the same thing all the time,then one time I asked her to stop s…
Replied Dec 15
New to forum,I have generalized dystonia,would love advice from you all!:)
John,can't believe your still single lol you sound soo funny.Thank you ever so much for your reply!It's nice to hear you have so much hope and live for the day.that's wonderful.Pain makes us lazy or…
Replied Dec 11
New to forum,I have generalized dystonia,would love advice from you all!:)
Hi Jessica so nice to meet you and I thank you for responding!It is my dream,truly to have DBS,I would do it in a heart beat,but the docs have to recommend it and I wait patiently.:(Acutually I have…
Replied Sep 20
New to forum,I have generalized dystonia,would love advice from you all!:)
Shuffles oh my God it's me from the dystonia bullentin board Maggiemay!!!!Yes we had the same experience you helped me get my dx after remicade,the FDA now post movement disorder as a side effect,I j…
Replied Sep 11
anastasia's Page
Latest Activity
Hi I have written on the dystonia (rather than generalised forum) as well but I just wanted to say that I believe my dystonia is generalised and someone said they have to use a wheelchair for distance well I have to use a wheelchair ALL the time so…
The problem with friends would be simelar if you had some sudden good fortune instead of the misfortune of illness. Lottery winners often report loosing touch with old friends to. The sad fact is that friendship is not what we thought it was. The go…
Hi Hopeful,I missed gabbin with you too:)I'm glad to see your on the right meds,it's nice to hear you have docs that listen!My mom says the same thing all the time,then one time I asked her to stop saying it will go away,it kept me in denial.My husb…
Hi Anastasia, to answer your Q's; posture is OK as long as I keep streching to maintain range of movement. It's the same as when you do a lot of walking, it gets harder to touch your toes with your legs streight. Tremour can be pretty good exercise…
Hi Anastasia, You havn't been on for a while. How are you doing? Did you see new Dr's? How was your daughters homecoming dance? I had botox injections all down my left leg and 2 in my left arm. Nov 30th still waiting for it to help walking on side o…
John,can't believe your still single lol you sound soo funny.Thank you ever so much for your reply!It's nice to hear you have so much hope and live for the day.that's wonderful.Pain makes us lazy or our brain malfinctioning but we are far from the l…
Just discovered your post, hope I'm not too late to reply. I have a generalised dystonia which is mild most of the time, occasionaly severe as you describe and occasionally goes away altogether.
It was 2001 before I was diagnosed after being symptom…
Although I personally do not suffer the physical effects of dystonia I have two children that do and a third that we do not know about yet. They have the Dyt1 gene and severe generalized dystonia. I started a foundation to find a cure called Tyler's…
could you contact my daughter who was also diagnosed at the age of 12 (3 weeks before she turned 13) and is now 14 and feeling like life will never be good again....... we have been to Mt Sinia in NY and are loking at having DBS in June 2010 if meds…
Hello deb
my name is Irene and I am here as a representative of my daughter..... she is 14 and has primary generalized dystonia as well. I read your segment and felt her pain in your writting. it is so hard people dont know what to do when they see…
Hi anastasia: Sorry I took so long to get back to you, still on that roller coaster. Back up again and doing good. Yes I get those tremors too, I take a herb called Gotu Kola which is all natural and it takes them away. It also balances the dopomine…
I hope this helps you. With dystonia you need to look at the lymphatic systems role in removing excess acidic waste and proteins from the nerves and structures of the brain. The lymphatic system is an emerging science that is not utilized in the und…
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- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- The online health resource I contribute to most frequently is:
- http://dystonia bulletin board
- This site is:
- a community I contribute to
Comment Wall (11 comments)
- At 8:34pm on December 17, 2009,
hopeful said…
- Hey Anastasia, I'm so sorry your best friend hasn't talked to you. She'll come around eventualy. Thats what I'm hoping from a couple of my close friends. One friend of mine has been in my life since we were 11 yrs old. But I do have lots of friends who have visited and called me. Some people just can't handle change and don't no what to say therefore they avoid us. I'm going to my factory wednesday they have a lunch for everyone and we get a ham for christmas. I'll have to use wheelchair. Excited to see everyone but nervous to. I havn't been to work since march. We have 280 people in the building. I know most of them. Like my second family. I just hope it won't be to emotional. I have till march 16 2010 to come back. Then I would be terminated. I no it's a long shot that I will get to go back. But I have to try hoping agua therapy will help. I get evaluated tommorow. I can't go to Mayo I have everythink budgeted if I went it would take away 2 months worth of cobra insurance. I asked my neuro He said he felt we were on a good path. He is the only one that has prescribe meds that help. I sincerely feel he has my best intrest at heart. He also is communicating w/ neuro at dystonia research institute in chicago. about me and video tapped me. Who is the Dr your seeing in NY is he md neuro who specializes in dystonia? As far as w/ hubby's I've tried to keep our relationship as hubby & wife rather than caretaker. I try to keep the small things going like holding his hand or pick on him slap his butt or call him my bit-- and tell him to do the dishes. I no I'm crazy! I just don't want this to take away our intamcy. Hard to feel sexy when your body is so crooked. I just try to make light of it. I can't believe your daughter got a diamond braclet from her boyfriend. Oh my gosh saterday night live special is on lot of old christmas flicks it's hilarious. I've missed gabbin w/you. Your not alone either. Thank goodness for internet. LOVE&PEACE hopeful
- At 7:48pm on October 16, 2009,
hopeful said…
- Hi Anastasia,
I'm glad your ok! Sounds like you've been keepin real busy. Your daughter is a princess. Jessie didn't even ask for those things. Thank God! We are living off of hubbys unemployment. He's not having much luck finding a job. But he is keeping busy cutting and gathering wood for the winter. We heat with wood all winter. Saves us alot of money. I would be nervous about DBS surgery. Their are success stories but also negative outcomes. I think Alex is nervous and excited at the same time.I go back to my neuro oct 20. I believe he's going to try new medicine. I should get my nerve & muscle test back then. I'm so glad your having better luck with dr's. I hope you get what you want from the new speacialist. Guess what? I found a support group for dystonia not far from it just started this month I didn't get to go to that one but I will attend the one in February. I can't believe your having the after homecoming party. " The Brave One" My daughter is at the football game right now. It's freezing out It least I got her to wear a coat & scarf Forget gloves or warmer clothes "That just wouldn't be cool" you know what I mean.I did go out today hubby & I went to Habitat for home we got a chimney cap for $10 it's worth $70 ya! I also found some wood objects I can use to decorate birdhouses. We went to walmart to had to buy me a Lg Hershey almond bar. yum! Iv'e been wanting one for weeks. A friend from work is coming to see me tommorow. She'll fill me in on the gossip at work.That should be interesting! Can't believe how colorful the trees are it was a beautiful drive to the store. Hope your getting out and about to see it to. Talk to you soon. LOVE&PEACE hopeful
- At 6:01pm on October 14, 2009,
hopeful said…
- Hey Anastasia,
Hoping you're doing ok! Did you watch the Drs show today about Alex who has dystonia? Shes getting DBS surgery and they will keep us updated on her recovery. I hope she does great. Miss ya! Hope to talk to you soon.
LOVE&PEACE hopeful
- At 1:32pm on September 27, 2009,
hopeful said…
- Hi Anastasia
Sorry hav'nt wrote in a while. We're getting ready for polebarn sale. "What a mess". Trying to do what I can to help. But of course I'm over-doing it. My speech has been horrible. And I keep freezing up in position when I'm trying to move. Jessie looked gorgeous for the dance and her boyfriend bought her a wrist flower band it was beautiful. red & white roses with whispy ferns. She had a great time. Whats the weather like in Jersey? Do you live in city or country? The weather here in Michigan is dreary about 59 degrees were exprcting lots of rain next couple of days. We live in a small town in the country. on a dirt road. Surrounded by lots of woods. I like it that way very peaceful w/ lots of birds. Painting birds is one of my hobbies I'm not a great painter but I enjoy it. Have'nt tryed it in a while due to cramping & tremor in hands. I think Ill take it easy rest of day and watch a movie. Hope all is going well for you and your family. Talk to you soon! LOVE&PEACE hopeful
- At 4:47pm on September 22, 2009,
hopeful said…
- anastasia, Sorry computer was occupied by hubby and kids. Homecoming is this friday. Jessie is wearing a dress I bought for myself 3 yrs ago I bought it to wear at one of those new years eve pkg. overnight with dancing. So wish we had done that. Always had excuse you know spent to much at christmas..blah blah...blah. Anyway it wouldn't fit me now. And the thought of wearing it now wouldn't be pretty ha ha.. JESS looks gorgeous in it. I went to dr. appt yesterday. hes keeping me on the deakote for another month and klonopin as needed at bedtime. I asked him about aqua therapy he said no. Which I figured. It's just frustrating. Dystonia won't even let you get stronger. My dr. also is doing DNA testing for huntington's and other auto immune diseases. to make sure dystonia isn't secondary. I go back in a month. Still have to start disability process. I'm terrified of the future don't no what to expect. I feel better talking to you and others w/ dystonia not knowing was the worst. Our knowledge and connections to eachother will help us make it tthrough the rough times. We do have alot in common. So glad we're friends talk to you soon. LOVE&PEACE hopeful
- At 12:58pm on September 13, 2009,
anastasia said…
- Hopeful,you sound sooo much like me,my husband always tells me my daughter misses our trips shopping together too!:)I also miss them,I still go to the mall in the wheelchair and she doesn't care as long as the money spent is on her,ha ha!And your right we took for grnated when the money was there,but a life lessen is surely learned and I think my kids will be better people for it when they are adults,they just don't see that now.Do you ever get scared for the future,I do,maybe because my mom says stuff like you don't know what the future will bring and that just scares me something terrible,I can't imagine life without my wonderful husband:)And I really can't believe your feet turn purple because mine always do and I had no idea why,thought it was autoimmune related so I just ignore it.And PT well my husband said exactly what you said,what good is PT when all it does is make you more crippled when the sessions over,I would have horrible spasms and tremors,my PT told me I needed morehelp in the way of medicine that conventional therapy can only go so far but the doc disagreed,she recommended botox and he said no and she said baclofen and he said ask rheum,it's one big circle of a mess.I stopped even though I didn't want to,I think I liked the hope that maybe it would cause a miracle when really my husband was right.I had dystonia probably since 23 yr old told at that time fibromyalgia,never followed up then told yrs later inflammatory arthritis 2ndary to my crohns small bowel,then they gave me remicade and it exacerbated the nuerological problem,can't look back but I'm so mad I was missed dx'd for so many years,on the other hand I hated going to the doctors and complaining and when I did restart I was having trouble walking already.I'm not the most compliant patient but I am now,learned a hard lessen although I just don't trust docs,ya know!I hope your having a great day too and I wish you all the best,I am so glad I found a friend like you,THANKS TONS!Take Care K!
- At 11:55am on September 13, 2009,
hopeful said…
- Hi Anastasia.
I do feel qulity. I can't help my son with college. I can't do the mother daughter shopping trips. I miss my independents. My kids miss my independece and my hubby. My son understands more than my daughter. But shes at that age everything is about how it affects her life. But I truly believe this will be a positive life lesson for them. I think it will teach them to be more understanding,giving and caring towards people I'm hoping it will also teach them to appreciate morals and people more than money and material things. When we had the money to do more things they took it for granted. They have to learn life dosn't always go as planned. But we can still stay positive and show them even during rough times life can still be ok. There is always someone worse off. Dystonia may take control my body but I'll but it can't have my soul! Do your hands and feet get ice cold so cold they feel like their burning do your feet turn purple. Iv'e read muscle spasms can slow your blood flow. Affect circulation. How long have you had dystonia? I would love to have aqua therapy. I had pt/ot for a couple months but could only do so much alot of times repetion would set off tremor and spasms even freezing positions like my hands would freeze in claw position so tight. Hope your having a great day! LOVE&PEACE hopeful
- At 4:08pm on September 12, 2009,
anastasia said…
- Happy b-day HOPEFUL!Wishing you much happiness and joy this year!I'm sorry to hear your tuff times too:(My son and I were just saying how hard it is to have it all then nothing and I said to him that's how I feel about being sick I had it all and now nothing,it works both ways although I know the kids hate it.Do you feel sooo gulity sometimes,my kids not intentionally of course but remind me of how hard it is.I can't get any asst. here in new jersey because my husband works,it is hard to swallow but I want the kids to eat and your right we worked for it for many years.I can't believe you get cramping in hands me too,just sarted couple months ago,not a happy camper,hard to play piano,type,writing is the worst.So many other dystonia patients get combo meds are are much better,I wish my doc was a little more aggressive.I had PT at parkinsons center and it did help but I can't afford it till SS comes in,my doc said he's a big believer in PT,nor looking forward to seeing him in a few weeks.Your right the spasms are so painful and when they stop your so sore like your in a fight ha ha and I do get stiffness in b/l hips.I was always told arthritis,I wasn't the doc and look what happened,sometimes I think we wouldn't be so bad if the docs knew what we had from the beginning.Good luck at your appt. I wish you nothing but the beat of LUCK and thanks for writing to me:)It's nice to share with someone!Anastasia
- At 12:13pm on September 12, 2009,
hopeful said…
- Hi anastasia
I can't believe our kids are the same age. A couple of my favorite books are "Sugar Queen" and Garden Spells. Also Mermaid Chair. They have magical settings. I too have intention tremor. My left leg will sometimes go into complete spasms and my right leg will go completly stiff.I was on sinement before didn't help at all. The Depokte ER hasn't helped either. I go back to Dr. Sept 21 will see whats next. We have always been responsible for bills to. We were always helping family with their hard ships. Can't anymore have to make ends meet ourselves. Makes me feel bad. I'm sorry you've had hard time with disability. Have you applied for food assistance.I know hard to swallow. But we will probably have to shortly. Hubby is unemployed and we pay cobra for insurance very pricey. I will hope to maybe get medicaid and food assistace until I can get disability hate to do it. But lord knows we've paid towards it for years.I worked in factory (Test Assembly, Repair) the last 11 years. Great company even have a year during illness before they let you go. I so badly want to go back.Have to figure what to do with myself. Have to have a purpose. I"ve had a lot of spasms in my arms & hands plus cramping in fingers alot of burning in legs and arms. do you experience this? Hope you have a great weekend! My moms bringing me a cake for my B-Day. I love her dearly But she keeps treating like a baby even the way she talks to me Can only handle so much of that.Talk at you soon. LOVE&PEACE hopeful
- At 6:25pm on September 10, 2009,
hopeful said…
- Hi anastasia
I'm married 19 yrs my son Jason is 18 and my daughter Jessie is 14. I'm so grateful their older. I;m grateful I got through their young yrs healthy. I don't drive go to stores once in a while if people stare I try to get over it It's not worth being a prisoner of your own home. I try to explain dystonia to people who ask. I like to do crafts my hubby made some bird houses and I paint and decorate them. Are you on disability? My short term is running out so I'm going to have to apply for ssi disability. I'm still trying to accept this is here to stay. I also like to read lets you go on adventure w/out leaving the house. Hope your ok today. talk at you soon. LOVE&PEACE hopeful
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