Just one of those days

I feel like every time I take one step forward, it's really two steps backwards. I'm so confused with my thoughts and emotions. I'm physically and emotionally exhausted. Is it my Parkinson's, my meds, lack of sufficient sleep, hormones (i am only 39). I need answers but feel the medical community isn't really hearing me. I feel like I'm going crazy inside my body and I'm screaming to just let me out. I have to go to work still but lack the energy to get out of bed. So I'm depressed some might say. Depressed! Why would I be depressed? I have a terrific and supportive family and can still manage much on my own. Are my struggles with raising two boys 8 and 6 the same as any other single parent or are they compounded by my disease. I know that I can't let Parkinson's Disease beat me, but today I just wish I could start life over....I'd like to climb back into bed and bury my head in the pillows. Maybe I should adjust my DBS? I wish there was a "fix it and make it all better" button I could push!

16 Replies

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  • Depressed? Why would you be depressed?

    It is the single most debilitating non motor symptom of Parkinson's and nothng to do with your family, your value to society, your sadness in having a long term condition. It's just as much part of the chemical imbalance in the brain as the lack of dopamine.

    Non motor sypmptons change with time and it sounds like you should seek help, and quickly. You are not to blame for Parkinson's nor are you to blame for depression.

    My husband, once he admitted he was depressed found great relief with medication and is now able to manage the depression which had him so low.

    Wave the white flag and get help.

    Sue

  • Thanks Sue. I have waved it and my boyfriend came running to my aid. Now I'm stressing over work because I could feel the PD/depression moving in last week so i couldn't work the full 80 hours. Work said I could use vacation time to make up the hours. I just told them pay me for what I worked. When do I seek a consult on disability?

  • 80 HOURS A WEEK ? THAT IS OUTRAGEOUS !!!

  • It sure is. Even for a non-pwp

  • As soon as possible. Try to find out, if your company can put you on medical leave and have your Neurologist fill out the disability paperwork. Parkinson's is sadly one of those disabilities, that will get approved usually rather easily.

    Then when you are on disability, it will take 2 years to get on Medicare.

    Hope this helps, hang in there.

  • Fortunately for some, depression/anxiety issues never surface making it difficult for others to get the credibility and treatment needed. Seek care from your doc's knowing that you may have to go elsewhere such as a Psychologist or Psychiatrist. You will need all the diagnostic documentation from as many supportive specialists as possible for disability.

  • Thank you for the tips on supporting documentation

  • Have you told work about your diagnosis? If not, perhaps you should. Parkinson's Disease is a Disabiloty and you are covered under the Family Medical Leave Act (FMLA). If you fear your work quality is suffering, or you are missing work time. You are protected from losing your job under FMLA.

    I tried working, bit a year after diagnosis, I was unable to handle the stress of my executive level position and decided to take 12weeks of FMLA time while I applied for Social security disability benefits, as well as the long term disabiloty benefit offered through my employer.

    I qualified for both and am home on disability, having qualified for both work's benefit and SSD.

    Raising two boys is hard, ,and I'm sure even harder as a single parent. It sounds like you have a great boyfriend who provides support you need. One of the hardest things to do I'd ask for help. Once you get past that hurdle, things get better.

    AND everyone is entitled to feel depressed and frustrated from the monster called PD from time to time. Stay strong and God bless

  • Yes- work is very aware of my diagnosis. I even work in human resources, probably why I have a heightened sense of the time I'm out of work. I am going to try some minor changes like the time of day that I haven't DBS programming done. It generally knocks me for A loop and I'm out if commission for the rest of day. It just so happened that was the case this last pay period. So generally pretty good on making up my time. But with management changes, my dotted line superior didn't want to pay me sick time. Thankfully, my boss chimed in and insisted they pay me the time.

  • PD , meds , motor non motor , DBS oh did i say PD oops i did .

    I had DBS 7 mths ago and am moving a lot better than pre DBS

    but i will say its ok to step back and allow myself to be a little screwy , out of sorts

    confused or whatever .Say a few ohms and understand that all the things you mentioned

    above are a factor in our PD lives today NOW ADD DBS LOL and THINGS GET very

    complicated . its a package deal . I dont really know where to go with this but you asked for help which is great . BTW i am doing botox FEB 6 for foot distonia and DX 6 years ago

    DBS done MAY 10 2012 sound familiar huh

    please take it easy on yourself

  • Please may you explain the term "ohms"?

  • Is this Ohms as in the DBS frequency or ohms as in meditation techniques?

  • As in meditation

    sorry om s or aum how funny sometimes i refer to my new friend DBS

    as my new higher power or additional HP . DBS will not take care of everything .

  • Larry - we seem to have similar symptoms and are being treated with similar treatments. I was diagnosed about 6 yrs ago; DBS surgery April 6, 2012; waiting for appt for Botox injection in right foot, wrist and elbow for dystonia. I am noticing an increase in the spans between dosing which is a benefit of the DBS. I just wish I could find a solution for the sleep issues. Klonopin hasn't been the best solution for me. Much of what I've been dealing with lately Is due to that powerful drug. Sometimes the symptoms from PD are easier to deal with rather than dealing with side effects caused by meds

  • I found I was MUCH happier when I quit taking Xanax for my ab dystonia. Still taking klonopin to sleep. But power to you !

  • I have read and hear all your pain as I was once in your shoes. Fighting the good fight to stay at my job for that is what the provider of the family does. Be damned if it puts my in the hospital on three different occasions during a 24 month span, I was not going to let this little inconvenience of PD change my life.

    How I was mistaken!! Finally unable to handle the stress that work was causing me, I had to come to the realization that it was killing me. When you have three doctors of all different specialties sit down it front of you and say enough is enough than you have to listen. Stress will make your PD symptoms multiply to levels that no DBS or increases in meds can manage. I know, I lived it. If you cannot reduce your work hours and stress levels you are going to spiral into the ground like I did. Sometimes we need hard reality and not cushy it will be ok. Stress is a killer all in itself. Facts are there for the reading as you are surely aware. Add PD to the mix and it is times 100.

    I had to do the disability thing and I am 47. Did I hate it, yes I did. But I would not be here now if I didn't. Just a car accident or heart attack, something away from not being here. The moment I got lost 1 MILE away from home I knew I was in trouble. Don't get that far.

    Wayne

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