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Found 7 results

  1. Dear friends! One young women with rare SEGAWA disease ask you an advise and to share your experience. Here is her story , i received it today, this is urgent because it is already 3 weeks and nobody can give her advise. Any opinion or experience highly appreciate thank you all! "I have been taking Nakom ( carbidopa/levadopa) drug for almost 14 years, if I do not take it strong hyperkinesis starts, involuntary movements, stiffness on my legs, I can not walk. My diagnosis is dopa dependent dystonia or Segawa disease, but I passed the gene analysis to search for mutations, it's negative. Although the symptoms are very similar. What then the doctors say that it can be secondary (acquired) dystonia as a result of the infection I had. I have a hemophilic infection, that was diagnosed to late . Now I'm pregnant, the period of 3 weeks and I also drink nakom, without it I can not live. Dear friends. I'm very worry. What will happen to the child? He will give birth with pathologies? Here in my town - in Kazan doctors can not answer this question, as there were no such cases. About me : 24 years old, I take nakom 1/8 part, 250 mg/25mg three times a day, he helps me 100% to control simptoms and to feel myself healthy, but now , during pregnancy, sometimes the same dose does not help. THE MAIN QUESTION IS will be MY BABY A healthy CHILD? IS IT POSSIBLE TO INCREASE THE DRUg doses DURING THE TIME OF Pregnancy , AS TO ME THE 1/8 PIECE OF THE TABLET BECOMES to small for me now. WHAT DOES DOCTORS SAY ABOUT THE INFLUENCE OF THE Levadopa/carbidopa to DEVELOPMENT OF THE EMBRYO? Thank you very much for any reply. It is very importent for me and my family! It is my first baby!
  2. Hello, I am studying design and technology in year 11 at Catherine McAuley High School and am currently designing a product to enable those who are diagnosed with Parkinson's Disease to live a more independent life. My main focus is on designing a tool which makes the everyday task of hanging out the laundry much easier. The following questions are part of my research in order for the design to suit personal needs and be successful in improving the lives of those who suffer from Parkinson's. Any questions that you don't feel comfortable completing can be left blank. Click here to complete the survey. Thank you for helping in the process of allowing those diagnosed with Parkinson's to become more independent.
  3. Hi! Does anyone else here's "Parkie" have to use the toilet every hour each night? If so, how do you deal with this? Any diaper brands you recommend for very very itchy sensitive skin? Thank You!
  4. jonticchi


    My wife and myself came from her doctor today and he wants her to go on Disability. She has a fulltime job but is not able to keep up with it anymore. She has been diagnosed officially with PD 4yrs ago and her job only has Temp. Disability. And the owner of the company is not very sympathetic. I know he has a business to run, So I suggested to my wife to go in on Monday and tell her boss she is not doing well, and that she will have to go on Temp. Disability until she is able to get Permanent from the state. I am not sure if this is the right thing to do or do we tell her boss the Doctor has to adjust her medication and until then she will not be able to come back to work. And that is true about adjusting the Meds. Because I know that it will probably take a while to get Permanent Disability. We can not go on with her getting some kind of check or we will be in trouble financially. Anybody with some advice would be greatly appreciated Or does she power through work until we figure out the State disability. which is not a good idea because she is progressing faster then we thought. Thanks
  5. My real question is can my wife go into work on Monday and tell her boss the doctors wants her to go on Disability because she is going on more medication and he is not sure how it will affect her? Now from her work she can only collect Temp. Disability then for Permanent she has to go through SSDI. So is this the right thing to do, her doctor said he would support her in any problems that might come up. She has been working with this company for 3 years.
  6. josephhayden

    Electric Wheelchair Research

    Hi, I'm new to the forum! My name is Joe and I'm an engineering student at Oxford University. This year I am working with three of my colleagues to design a semi-autonomous electric wheelchair for use by people diagnosed with multiple sclerosis, cerebral palsy or Parkinson's disease. In the project we will be taking an existing electric wheelchair and looking to build onto it a system which will aid the user with going about their daily lives. To give you an idea, we are currently looking at how the wheelchair can be controlled during an onset of tremors, or other debilitating symptoms, but the scope for what we can do is quite broad. Although within the group we have experience of working with people with disabilities, none of us have first hand knowledge of the diseases, the symptoms, or the effects they have on people's lives. The reason I have come to this forum is to ask for your help and valuable knowledge to develop our project. We are specifically looking at an age group of between 20 and 50 years of age, and those who use or have used electric wheelchairs. Although we would welcome input from everybody. I ask you to get in touch and tell us about your experiences of using the wheelchairs: positives, negatives, ways you feel they could be improved. We would also like to know about how these diseases affect everyday life, to build a picture of the needs and requirements of the user. Obviously these experiences vary a lot between each person, but having done some research we will look to narrow this down to some key issues and perhaps focus on case studies of a few people. I must stress this is a research project, and there is no commercial aspect to it. For this year the project is purely theoretical, however should we come up with something good we may well continue the development next year as this is a subject we all feel passionate about. Feel free to comment on the forum, or you can contact me via email if you prefer: joseph.hayden@seh.ox.ac.uk Thank you for your help in advance, your time is much appreciated. Joe
  7. Daniel Parris

    Parkinson's survey

    Hello everyone. I'm a senior in college working with a client who has an excellent idea for a device to assist people living with Parkinson's Disease. To help work with him, one thing we have done is create a short survey to see what features would be useful for his product and things of that nature. If any of you could take the time to complete this short survey (should take no more than two minutes), you'd be helping us out, as well as our client and hopefully all of those struggling with Parkinson's Disease today. Any and all responses we can get are helpful. Thank you for your time, and by all means, feel free to share this survey link. Take care and have a wonderful day. https://wcu.qualtrics.com/SE/?SID=SV_aga7juJWNOGRVpH