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Debsten

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  1. The breathing does help. I just hate the going to sleep feeling good and waking up in mad panic and feeling of doom and gloom. My MDS suggested taking extra sinemet before bed but that made me not sleep even more and didn't seem to make a difference. I think I may just need to find more to occupy my mind, I have gone from working, being busy go go go, to a lot of time on my hands and every focus on drs, therapist appointments etc. I guess I have to keep working with the meds and try to find the new normal. I do keep a journal, but haven't found anything that stands out. I'll keep at it. My husband is a pilot and I have no family near by, he has been around or I've had family here visiting. He is getting ready to be back on the road again in May so I think that plays on my mind. I think I'm anxious about being depressed and depressed about being anxious :-(. All my life I've been the positive, happy go lucky so I think I'm just struggling to understand these emotions.
  2. Hi, I'm 41 and diagnosed in December. I am really struggling with anxiety and depression. Just when I feel I am making head way, boom it is back with a vengeance and I am losing hope of feeling the joy again. I am on sinemet 3 times a day and gapapentin for neuropathy and celexa for the anxiety depression. I feel so helpless and alone right now. I never had the anxiety or depression before the thought of Parkinson's came along, then it hit me hard but I started to work through it. I'm seeing a psychiatrist and psychologist and in my mind I know all the answers but I can't connect them to my feelings. I have a wonderful supportive family and lots of friends so feel I have no reason to feel this way, but just can't get past it. I feel a lot better at night times but the mornings and day get really hard a lot of the time. I am exercising every day and trying to think positive but is like my mind has been taken over. I was always the positive bubbly one so this is squashing my spirit. Any tips on how you all got through the anxiety and depression? Thanks so much Debbie
  3. Debsten

    Sinemet not wearing off

    Hi, I was diagnosed with Parkinson's December 2017 at 40. Symptoms were loss of hand control in left hand with decreased arm swing, and a lot of neck stiffness. I hadn't had the neck stiffness until a car accident in June that year where an MRI showed I herniated a disc C5-C6. it just got progressively worse along with the other symtoms. I had a nerve study in June which diagnosed chronic Ulnar neuropathy in my left hand, chronic cervical radiculopathy and carpal tunnel in my right hand. I had been back and forth to the neurologist trying to work out what was going on and doing physical therapy and occupational therapy which helped some what but I got extremely anxious about it all that everything seemed to intensify. I was tried on Sinemet in October which really helped with all the stiffness in the neck and also helped the hands some what, not 100%. My neurologist then took me off it and referred me to a movement disorder specialist about a week after stopping them the stiffness started to come back. This mentally sent me spiralling because of the thought of Parkinson's. I had to wait several months to see the MDS. Finally did in December and after 15 minutes of having me walk, balance check, finger test etc he said he was 70% sure it was Parkinson's but a Dat scan would confirm. He put me back on sinemet which again helped. Also put me on celexa for the anxiety and depression and gabapentin for the nerve pain and Xanax for anxiety. I had the Dat Scan in January which confirmed Parkinson's. Results were : Focal symmetrical tracer uptake within the bilateral caudate headsand lack of uptake within the putamen without the typical "commashape"appearance. This is consistent with loss of dopaminergic neurons asnoted in parkinsonism. I have continued to take all the same drugs and the anxiety and depression is a lot better, but still an ongoing issue. Physically I have gotten better and better but my question is about the sinemet (sorry for the long winded post, just wanted to give some background). I take 1 25/100 at 7am, 1 at noon and the last one at 5pm. When I get up in the morning before my first dose I feel pretty much the same as when I took the last dose at 5pm, the same during the day. I take my doses at the same times but never really have any physical feelings of it having worn off. I was hoping that meant maybe I could take a smaller dose but my MDS said no just keep taking it, my concern was the side effects after long term use. Is it normal in young onset Parkinson's that the meds last and you don't feel the "off" periods. Thanks, Debbie
  4. Debsten

    Diagnosed at 40 very scared

    Well I just got back DATScan results confirming PD. Also saw another MDS for 2nd opinion. He recommended trying Ropinerole and then possibly cutting down on sinemet to 1/2 tablet 3 times a day. He did say that it may help with my depression but could also make it worse. This scares me a little as it is the anxiety and depression that is scaring me the most. Anyone have experience with Ropinerole?
  5. Debsten

    Diagnosed at 40 very scared

    Thanks everyone, I hope I see the light at the end of the tunnel soon! It is a big fight for me at the moment, I dread waking up each morning and am scared of being alone with my thoughts. I am usually a very positive person so these feelings are hard for me to understand. Physically the neck & shoulder pain, arm weak feeling and buzzing feeling all over is what gets me the most. I just keep telling myself it will get better and I can do this. I am looking at trying to see a specialist at either UCSF or Stanford. Anyone have any experience with either?
  6. Debsten

    Diagnosed at 40 very scared

    Thanks for your responses. I like your suggestions waruna1, but I can’t just stop the sinemet. My plan is to have DATScan and go from there. I will also be shopping around for MDS’s to get one I feel best with. For the moment I also want to be able to get over this anxiety & depression, I have so much to look forward to in life and hate this feeling I am having. Jill thanks for your reply and your prayers. This is definitely a tough journey, especially mentally for me at the moment. I really look forward to being on the other side of that struggle, I want my joy back.
  7. Debsten

    Diagnosed at 40 very scared

    Waruna01, did you have a DATScan or your symptoms just all went away?
  8. Debsten

    Diagnosed at 40 very scared

    I didn’t jump to the PD diagnosis, when I was so stiff and arms were not getting better and other symptoms my neurologist referred me to a MDS. He seems pretty sure but is doing the DATscan per my request. I would love it to prove otherwise, but don’t want to have false hope. I didn’t realize loss of smell and constipation were a definite symptom? I would love to go to AUSTRALIA but can’t just drop everything unfortunately.
  9. Debsten

    Diagnosed at 40 very scared

    I still have full sense of smell and have never had constipation. My main symptoms were rigidly, loss arm swing, hand control, decreased blink, some slowness and sometimes speech slurred. I guess the DATScan will be the final confirmation. I also have a 18mm pineal cyst but doctors don’t think that is contributing to anything. I have been living out of AUSTRALIA for 18 years with no problems until now. I go back a lot and my family is here a lot. I have to conquer this anxiety and then go from there. Hopefully I can get Datscan soon.
  10. Debsten

    Diagnosed at 40 very scared

    I did not get confirmed from DatScan, I am awaiting approval from insurance. Just saw MDS today and he says I am responding to Sinemet so there is no reason for me to go off it. I asked about the mucana purines and he said that it was not a good idea. Yes I did get diagnosis when already anxious, for 8 months I had been basically thinking about every move/feeling in my body and after my car accident my neck got a lot worse so was even more conscious of everything not knowing what was going on. When I got all the neuropathy diagnosis I was relieved but PT wasn’t helping much, which is what lead back to PD. I don’t know if I could function without the sinemet if I got rid of the anxiety, I do know I could before my accident, it was the neck stiffness that made it unbearable. My top priority is to get over the mental aspect and go from there and also get a second opinion. I am from Australia, so that OS idea does sound good, especially since my family has been here during all this and leave next month which makes my anxiety spike. But I have 2 kids to take care of and my husband is a pilot so is gone a couple nights a week.
  11. Debsten

    Diagnosed at 40 very scared

    Thank you! After weeks of trying I finally got into a psychologist this week so hoping that will help. The hardest thing for me is how it just comes on, and the physical feelings that come with it. I hate not having any appetite (although I’m eating good), and zest for life even though I physically feel pretty good.
  12. Debsten

    Diagnosed at 40 very scared

    I am still battling the anxiety/depression, is somewhat better. I’m Taking 1 sinemet 3 times a day, Celexa (started 12/14 with 20mg, upped to 40mg on 12/21) and 100mg Gabapentin with the sinemet 3 times a day (7, 12 & 5) I feel like I have accepted the diagnosis but my mind has been taken over by the anxiety. I can be all good one minute and then, boom, is like a light switch is flicked and I have a knot in my stomach and feel like I’ve been plugged into an electrical socket. I have no desire to do the things I usually love. It is really crazy to me that logically I can work through it my the feelings of anxiety are over powering. I have noticed that the anxiety maybe seems better after I take the sinemet & Gabapentin. It is much worse in the morning. I don’t sleep great but find if I am awake at night mentally I feel really good, but that goes once I wake up. Physically I’m pretty good also. But find I am agitated and my calf muscles twitch/contract when sitting still Please tell me this is just the process of getting the meds right? I’m forcing myself out to do things and exercising every day but I’m so frustrated with the anxiety and lack of interest in things. Thanks Debbie
  13. Debsten

    Diagnosed at 40 very scared

    Thank you so much for all the replies and information! Taking it day by day and trying to stay positive. I’ve got lots to be thankful for so trying to keep that mindset. If anyone has any recommendations for an MDS in the Northern California area please let me know. I believe mine is very good and knowledgeable, but I would like one more focused on natural as much as possible.
  14. Debsten

    Diagnosed at 40 very scared

    He also put me on celexa & Xanax at night so I can sleep. Mentally I am really struggling 😢. I’m usually a positive person so this is really scaring me that I can’t control my emotions.
  15. Debsten

    Diagnosed at 40 very scared

    Yes he is. I have been switched to 4 sinemet a day. Still very anxious/depressed and agitated.
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