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mickigarden

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mickigarden last won the day on February 17 2015

mickigarden had the most liked content!

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About mickigarden

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    Advanced Member

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    Female
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    southern california
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    Gardening, flower arrangements, antiques, player piano grandchilden
  1. Thanks again to all of you who responded. I was beginning to think I had lung cancer or CHF. It never dawned on me that it could be correlated with my c / l wearing off. We have been playing with my dosage and interval as I responded so well to DBS and probably cut down my dosage significantly after surgery. I was on 25/100mg. q 2 1/2 hrs. 7-8x per 24hrs. and went down to 1/2 pill q 4hrs. x4 per 24hrs. Micki
  2. Dr. Okun, thanks so much for your quick response. I will speak with my gp about it next week. Micki
  3. Thanks for your input. I will see my GP next week. micki
  4. Dear Dr. Okum I had DBS surgery done last June. I have noticed a change in my respiratory pattern in the last couple of months. I find myself with shallow, panting like respirations both at rest and when active. It was noticed by my MDS who referred me to my GP and said there is no correlation with the surgery. It is intermittent. I'm just wondering if you have ever seen this. Thanks, Micki
  5. I had my DBS surgery done last June. I have noticed that my breathing pattern has been altered in the last few months. I seem to be having rapid shallow breathing like panting even at rest. It is not continuous but comes and goes. My MDS noticed it as well as the mammogram tech. Have any of you who have had the surgery noticed this? My MDS said there was no correlation to DBS and encouraged me to see my GP. Thanks! Micki
  6. Hi, I too am on LTD through my previous employer. I received a letter in the mail this week stating my benefits would be stopping this coming April just prior to my 65th birthday. I thought it cont. until my 66th birthday which is my full retirement age. When I called they said the reason it will be stopping is that the company I worked for had originally purchased a policy which only covered their employees until their 65th birthday. So now we are in a quagmire trying to figure out how we are going to make up the difference in our income. Your policy may be different but I would call or write them to verify when it ends so you won't be in the same position. Micki
  7. Noah, your MRI story sounds way too familiar! Mine was scheduled in pm and ended up waiting over 1 1/2 hrs. at which time I was starving and nervous and had significant tremors. This was after taking Ativan. The next time I was scheduled for an MRI my neuro wrote the order MRI with anesthesia . This time it was ok. How they expect someone with PD who has tremor to lie still is beyond me. Micki
  8. Glad to hear it! Micki
  9. Dr. Okun, recently there have been multiple commercials depicting war veterans with traumatic brain injuries. Is there research being done on DBS to help these poor people? Micki
  10. Dear Siak, I made an adjustment recently which increased my voltage by only 0.1 and I felt wobbly and came close to falling several times and when I decreased the voltage setting just by .1 it vastly improved my sense of balance. Also I have been practicing easy Thai chi daily to help with balance. It's a very simple form of just the basics. The DVD is sold on this site as Easy tai chi for seniors and those with Parkinsons.. Micki
  11. Dear Noah, I had the surgery June 25th and am still working with my MDS to fine tune my settings. I have been told by some of my forum friends to have patience and take things slowly. Every tweak takes 2 weeks or more to feel the full effect of the change and it can be frustrating to know if the change helped my issue or not. When I don't see a change right away a I get frustrated but then am amazed when 3-4 days later something changes. I have noticed (or perceive) that my cognitive abilities have slightly declined as far as finding the right word at times, memory issues (Short term), slower gait, some slurring of speech when tired. On the other hand, I no longer have a window of on time of less than an hour when I am taking my meds q 2 1/2 hrs. I no longer have dyskinesia or tremors, or stiffness . I have more energy to do household tasks although I still have days when I am overspent from trying to do too much the day before and cannot do more than watch tv or read. I still have dark days wondering how bad I will get and "WHY ME?". When I spend time with my grandbabies I realize how lucky I am to spend some quality time with them whereas before I basically sat in a chair and watched the activities. Remember DBS is not a cure...more like a respite from constant movement, rigidity, grimacing and jerking. Would I do it again? You betcha! READ, EDUCATE YOURSELF, WEIGH YOUR OPTIONS. We are all so different in this disease process and your decision has to be personal. Only you are there when you close your eyes at night. Oh that is if you are able to sleep. I forgot that added benefit of actually sleeping through the night. MICKI
  12. Michael, wow you did it! It is so cool to have our own forum. Thanks for all your hard work to get to this point and for all the hard work you plan on putting in to get us going. I am still in the early days of DBS as you know and trying to be patient, not my strong suit. What a relief to have a place to share our ups and downs (little humor there). Thanks again, Micki
  13. OMG! I can't believe what has happened. I am so sorry to hear of this awful thing. Hope you heal quick buddy. Micki
  14. Dbs

    Noah, please take the time to get the basics on DBS from the book that Waruna spoke about regarding DBS. It's written by Sierra Farris and can be found on Amazon. Education is the best way to alleviate some of your fears. It's a big decision and you want to make an informed decision. Micki
  15. Dbs

    Noah, I agree with Michael and waruna . You need to learn as much as you can about DBS prior to surgery to be able to make an informed decision. Michael's thoughts on getting it done locally can be beneficial providing they are up to the task. If you search this forum you will find several threads dealing with DBS where those of us who have done it discuss our experiences and may prove helpful. If you look at 4 year DBS update there is a link from the 25th of Aug. from waruna which connects to the blog of Sierra Farris which contains helpful information. Her book as well as this forums booklet Parkinson's Disease Deep Brain Stimulation would also be helpful. This is a big decision and a personal choice. It is not a cure but a treatment as someone on this forum shared with me. Would I have this treatment again? You bet ya! Micki