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  hazeleyes34 (11/21/09)

  Thank you 4 the link. I am so with you as well. I kno how bad the struggles can b. I just try 2 stay positive and I hope you will 2!! :)
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  I'm With You
  

  angela56 (11/15/09)

  It sounds like you do have a lot of health problems. I am so glad you can still work that is amazing.
  My right foot started turning in several years ago . I could barely walk, my tendons or muscles had shrunk, didn't know that could happen. Had weeks of physical threapy, and got a leg brace, stretching is important. I have found those bands to work really well. Unfortunately since the scooter incident I haven't exercised at all, and that is bad for the muscles. My back continues to hurt, this morning I had trouble getting out of bed to let the dog out. The pain was really bad.
  We are planning to move near Charlotte where our daughter lives. I am getting an appointment with the ms clinic down there. Our son lives about 3 hours from her in Augusta GA. So we can see them both more often, husband has to find a job, down there he is a tractor trailer driver so that shouldn't be difficult, We haven't listed the house yet, but we are considering an agent.
  Sorry about the heart condition, I know that must be scary, and the tumor, hopefully it doesn't come back. My daughter had a tumor in her breast when she was in her early 20's. I think it was some kind of fibroid tumor, not malignant thank God.
  I think the kid's are coming up in Dec. at different times. Can't wait to see them.
  I used to make homemade bread, pies, cakes, even experimented with different items, no more. I can't stand that long.
  I know the spasms are painful, sometimes at night my voice box goes into spasm.
  Feels like it is going to jump out of my throat, it has happened during the day too.
  It can be painful.
  I have nerves that jump everywhere, I used to sit and watch my toes move, lost interest in that.
  I sometimes wonder why people go through life with no health problems and others have a lot of health problems.
  I didn't smoke, take drugs. or do anything to cause any of this.
  I have flown over Utah. I just saw rugged mountains, but it was beautiful from the air.
  We generally don't have a lot of snow, in this immediate area, but if you drive just a few miles, you can find a ski resort.
  You take care, if your dr. thinks the tysabri will work I would try it. My disease has been slow in progression. I did take copaxone for awhile, but it didn't help the disease, and it was so expensive.
  Talk to you soon.
  Love, Angela
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  Flowers
  

  angela56 (11/04/09)

  Something just occured to me you have all the problems with ms, and dystonia, and then the student's come in with their problems. I don't know how you handle that.
  Sorry about the legs. I didn't sleep for nearly a year because I didn't tell the doctor my legs felt so weifd that I couldn't sleep, he gave me elavil, I know it is an antidepressent but it works, just a mild dose at bedtime.
  I know that Montery is probably one of the coolest places in CA other than the mountains. It was so great though I loved the farmer's market, they had that once a week, and you could buy almost anything. I also like a street named Candylane at Christmas it looked like a candy lane. Carmel was one of the most beautiful little towns I have ever seen, and I couldn't get over dog's eating lunch with their owners at restaurants. I saw a guy and his little yorkie at a cafe, the little dog was begging for bites of salad. Really cute.
  So sorry about your son and the marital problems. We went through that once, but My daughter worked, it out, they had a little 4 year old at the time, she is 12 now, and it was just tearing her to pieces, so grandmom cried, and cried. Had to go to the hospital once, basically just from the stress. Heck I will never figure out how to figure stress. I am a cryer, I can cry for a long time. Luckily don't do it often.
  Did you see the woman on tv that walks to NY marathon, she has ms, and has walked it for years. Takes two days. Crutches on both hands. She stops to hug the prostitutes. Bet that is unusual.
  You take care.
  Love, Angela
  
  
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  Rainbow
  

  angela56 (11/04/09)

  I am doing okay, still back pain, and no voice, well there is kind of a voice but you wouldn't understand it. My family does pretty good.
  You went to CA, I have been to Monterey twice, we went by plane. Our son was stationed there at the time. I am fasinated by riding on a plane, just getting in the air is a miracle to me. Looking down at the jagged mountains and the flat lands
  was so much fun. I will admit that not being able to walk was a bit of a problem at times. Those guy's that get tipped for pushing a wheelchair are trying quickly to get from one person to the next, in Columbus Oh, the pilot called in advance for a wheelchair, they never brought one, so I walked up the ramp, he saw how difficult it was, and man did he yell at those people at the desk. He and a flight attendent waited with us, until we all gave up.
  I loved the Pacific so different from the Atlantic. We actually were there when a small earthquake occured it shook the trees outside, and it felt like the floors were waving. I wasn't scared, my son was in the bathroom so I walked back knocked on the door and told him we were having an earthquake, he said no kidding.
  I am glad that your mother in law is doing so well.
  I can understand your concern about changing to tysabri. I have read it works wonders, but then there are dangers, copaxone is safe. I took it for awhile. My husband gave me the injections. My hands tremor so I couldn't. I stopped because of the expense, and it wasn't helping any symptoms.
  How is your dystonia doing. it is an ugly disease, but it can go into remission I read that, I know my cervical dystonia is much better than it was when I first got sick. Now it is the spasmodic dyshonia, and the back that are bugging me. Of course the tremors are bothersome too. I would like to have the x rays explained to me. I don't really understand narrowing of the discs, I knew I had a curvature, and osteoarthritis is not unusual at my age, but I exercised every day, now afraid to.
  Oh well that is enough about me. I just wish again that we could all get well, and enjoy the rest of our lives.
  Love, Angela
  
  
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  angela56 (10/21/09)

  I hope you aren't having another relapse. I really haven't had relapses just a gradual worsening of the ms. Of course I have the voice problem with dystonia, I also have a lot of tremors, I have jerky little nerve problems, I describe it as popcorn popping, those hit just about everywhere. I have has spasms in my larynx, that really hurts but just for a few seconds. I have had vertigo, a few times. I hate that spinning sensation, I hate being dizzy too, but vertigo is much worse.
  I hope that you can continue to work, I know it must be very difficult. I remember when the doctor told me I had cervical dystonia, and ms. I said lucky me. That was so long ago. I really didn't know what a journey it would be. I was 38, and doing well. Until my neck started pulling to the right. I could actually walk pretty well in the beginning, but then that kind of went down hill too. I have heard that tremors are one of the most difficult things to control. I had beautiful handwriting it is gone, because of tremors. Funny the little things you miss. I haven't driven for 18 years, and at the beginning I missed that, not so much now. I can't turn my head very easily, and my reaction time is slow, so I gave up driving on my own.
  I am glad your husband has activities that he enjoys. My husband likes to listen to old records, I guess that is his main interest. He played football in high school very athletic, can't get him to exercise now though. He really needs to, but it seems like when I got sick he just stopped doing anything really physical, our 12 year old granddaughter visited during the Summer, and she kept him going. The grandkid's really give him a work out they just live to far away. I am hoping neither my children or grandchildren ever have to go through an illness like mine, I do wonder about the dystonia being hereditary but not proof of that. My kid's are very conscious of their weight. Both in very good physical condition. Our oldest granddaughter was recently diagnosed with asthma, her father has it. She dances, plays softball, and stays active. I hate it that she has asthma, but it doesn't seem to slow her down. I have 3 cousins on my father's side of the family that have lupus, and 2 second cousins on my mother's side, one with dystonia, the blepharospasm, the eye problem, and the other with ms, his ms is mild though only a couple of attacks basically with his eyes. They are both older than me. The one's with lupus are close to my age. I know there is a genetic component, but I also know that identical twins can have the same genes and one gets ms and the other doesn't. There has to be more than just genetics involved.
  I am thankful for that. My brother is just 16 months older than me, and he had a severe stroke when he was 38, same age my illness showed up. We both had a severe case of scarlet fever when we were younger, our fevers were very high for a week, and I am wondering if that may have contributed to our problems, who knows. There are only two siblings. He has suffered for years from the stroke.
  He has seizures, and hallucinations. He still manages to function, doesn't drive of course. He had severe pain in his head until a pain doctor prescribed something that has helped a lot. He also has paralyzed on the left side. My parent' s lived relatively healthy lives my dad smoked for years, and had a heart condition, I contribute that to the smoking he died from cancer. My mom is still alive, and at 76 still mows her yard. She has psoriasis pretty bad, but won't do anything to help keep it in check, if a medication bothers her she just quits. Other than that she seems to be healthy never goes to the doctor so we're not sure, but that is the way she chooses to live, so we just let her do as she pleases. She was dependent on my dad doesn't drive, my aunt lives near her so she takes her places. My dad left enough money for my mom to be comfortable, but she rarely spends any. Oh well that's another story. I hate our diseases, I am grateful we were born at a later date, they used to put people with physical illness' in mental institutions. I read the history of ms, not a good up until the 1900's people were treated badly. Can you imagine being in a mental institution when your mind is still intact. I have read everything I can about ms, there isn't a lot to read about dystonia. Well I think I have talked long enough. Have a good day, and I hope those problems get better.
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  Prayer
  

  angela56 (10/21/09)

  I hope the doctor can do something to ease your pain. I hate spasms, and with the dystonia in the beginning my neck would just pull really hard to the right side.
  This disease is truly unbelieveable in it's ability to change the structure of your body. The curvature in my spine was caused by the dystonia. I know it can be emotionally frustrating too. Not to mention the multiple sclerosis that is a monster too. I look at people who are well ,even older people and I think how grateful they should be for the ability to walk, some of them walk so quickly I can't believe it.
  My spine is pretty much a mess. Narrowed discs, a little osteoarthritis, and the curvature. I think the accident just made everything worse. I did not know about the arthritis or the narrowed discs.
  I hope only the best for you. The diagnosis is definitely a beginning. I remember not knowing what dystonia was. My family researched it at the library. That's what we do when there is a problem, we look it up to see exactly what it is.
  I think knowledge helps. Even if it doesn't heal at least you know what is going on.
  Of course working in a university you are aware of that.
  Take care.
  Love, Angela
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  Prayer
  

  nerisa86 (10/14/09)

  Thank you so much for your condolences and I appreciate you taking time out to check on my status(=!
  You have my prayers
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  Ray of Sunshine
  

  angela56 (10/14/09)

  If you balance is really bad I think you can get something like a seatbelt for the scooter. I have seen a few people with them.
  My son and his family have lived in Monterey CA, so we have been there twice, the live in GA now. I really liked Monterey a little chilly though. We went to Carmel beautiful little town, and also to Big Sur, that highway gives me the creeps, but he scenery was beautiful. We went to the street market they have there once a week, that was really neat, went to the ocean, but it was in the high 50's. Also went to San Francisco once. It was amazing to hear all the different languages being spoken, we live in an area where a lot of people have trouble with English, shouldn't say that but it is true. Since I lost my voice over a year ago, I listen a lot more, and the conversations are pretty weird at times.
  My son and his daughter, and wife have been to Disneyland, and my granddaughter and daughter have been there twice, my granddaughter was in a National beauty pageant. She placed in talent, and spokesmodel, she gave a speech on multiple sclerosis, saw the dvd, and made me cry, she came in first runnerup out of over 100 girls.
  I know that cervical dystonia is a monster don't know of any other way to describe it. The dysphonia the inability to speak has been bad to. The larynx can actually go into painful spasms, that doesn't happen to often. The ms has gotten worse since the accident. I have a curvature in my spine due to the cervical dystonia.
  It pulled very hard in the beginning, couldn't even sit up to read. The fall on the scooter went to the left, and the curvature in my spine is to the right. The doctor took x ray's to make sure there isn't a slight fracture.
  I really haven't been out of the house much for two weeks. I couldn't talk before but I enjoyed going out.
  Sounds like your ms, is being nasty. Sometimes I wonder how a brain can have so many things happen to it. I have quite a few lesions. I am just having a lot more trouble walking and my tremors are worse. I wish that some very intelligent person would find something to help us. Maybe someday.
  I saw a few surfers in CA. It was great to watch but I could never have done anything like that. Athletics were never my cup of tea. My kid's still are athletic, and my husband played football in high school, while I liked drama, and art.
  I have trouble with my handwriting have for years, and can't draw the cartoon characters I used to draw for my kid's. Tremors in the hands have put a stop to that. I can still read no longer out loud but to myself. I loved reading to the grand kid's, and the kid's when they were younger. I will check the area to be your friend, and see if it works this time.
  Take care.
  Angela
  t
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  Flowers
  

  angela56 (10/13/09)

  My scooter is a little 3 wheeler actually a wheelchair just easier to use out doors.
  I have a 3 wheel bike due to balance problems. Haven't been on it for ages though.
  Probably should sale it. I thought it would be good exercise, but I have only used it about 3 times. Rather expensive too.
  My balance problems come and go. I remember during the first few years it was really bad. Scary too, because you never know when you are going to fall.
  I really hate ms, and dystonia. One of my favorite things was to walk, I walked almost everywhere. The beach isn't really fun any more, well I enjoy watching dolphins, and the grandkid's not together. My son owns a villa in Oak Island, NC.
  We have been there a couple of times. It is peaceful, they aren't directly on the beach, but it isn't far away. I think my dog and I need to move to a cooler climate we both get hot so easily. My husband gets cold, but we really don't. The dog is a 13 year old golden retreiver we have had him since he was 8 weeks old.
  I miss human contact, I liked getting out, and talking, can't talk now due to the dystonia. I am glad the children were older when I got sick, my son was 15 in high school, and my daughter was 18, and in her second year of college. I feel like I am missing a lot with the grandchildren. I know if I was well I could do a lot more with them.
  There are so many emotions with any chronic disease I think. I hate to focus on me so much, sometimes I think I do. The grandkid's don't seem to have a problem with my condition though. All they care about is being loved.
  Feel sorry for my husband, at this age, I thought we would be able to do so much. Like hiking and just vacationing. He is nice about it, but I know he wishes I felt better, and could do more.
  The kid's are great my daughter pampers me, and my son tries to motivate me to continue. We were all like one connection when they were younger, I didn't work until later then got sick, well like you said I think I had been sick for awhile, just took awhile to really show it ugly head.
  You take care.
  Love, Angela
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  Rainbow
  

  angela56 (10/12/09)

  Would love to be your friend. I am having a little set back now due to a scooter accident, so I may not be on as often, but I will definitely be your friend. Hope things are holding together for you. Being isolated is a big problem, and it sounds like you won't let that happen.

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