I am 59 and was dxed in 2009. I was exercising and doing okay, but now I am feeling fearful about the progression of the PD. I was a concert violist for 35 years and I feel my life has lost a lot of the purpose and meaning it once had. I now have to reinvent myself and I was accepting the reality of my situation, but recently have become very low on energy and enthusiasm.
I have a tremor in my right hand and toes. I was doing a lot of walking as I do not have a car, but now I have slowed down and obsess that I might fall. My posture is pretty good and I don't shuffle, but I have this "other worldly" feeling when I am out and about. I think it's from anxiety.
I see a counselor 2x a month for psychotherapy.
I am feeling very alone right now. I don't know any other depressed Parkies..
;-(
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JanellenGrimaldi
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It was very difficult for me to quit teaching because of PD. I know what you feel like when things you use to be able to do with friends you can't do anymore.
They are busy with their life and you have a new one they can't understand.
I wish I had some advice that I could share with you.
Sharing on this blog is a good start. When feeling alone reach out to us.
Yes I can teach and do master classes but I am having a hard time finding people who can afford my services what with the economy so bad here. Ii will try to keep smiling, though..
Diagnosed in 2002 at 53, I was a career ortho manual PT. I developed anxiety and depression about 1 yo. Lorazapam helps the anxiety but all depression meds just screw me up more. Psychotherapy has helped but the most important is family and friends.... exercise too.
Am on a depression med that hasn't started working yet. I am a little concerned about all the meds. Starting a trial of Sinemet. Still on a very low dose and so no results yet. The side effects of these meds makes me leary, too. Thanks for the response. Just wish I had more friends. My brother and his wife are my only family here.
I shared my diagnosis with all my friends and family and let them know I was still me. I think the more they know about your condition the better and more acccepting and relaxed around you they become. I still go out with them and they know I'll still be eating long after they are done; we just have a longer lunch with each other. I also struggle with depression (on Paxil) and anxiety (Ativan).
I found this on Parkinson's Unlocked a while back and sent it to all my friends and family. Maybe it will help you. Hugs, Terri
LETTER FOR MY FAMILY/FRIENDS (author unknown)
I have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as they grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.
Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. You probably have not. It is the Parkinson's, keep talking to me. Ignore the tears; I'll be ok in a few minutes.
Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends?
My face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's I hear you. I have the same intelligence; it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.
Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's Let me take my time, keep talking.
Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending, exercises must be done every day. Help me with them if you can.
My voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.
Sleeplessness: I may complain that I can't sleep. If I wander around in the middle of the night, that's Parkinson's it has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping. Be patient, my friends. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends. I want to continue to be part of life. Invite me even though I may not be able to go, it’s lonely on your own. Please remain my friend.
Thank you to those who have remained my friend and still invite me out and to those who took advantage by pretending to be my friend, you are forgiven. However to those who no longer want my friendship that’s too bad, because you’ve lost a good friend. I still wish you the very best now and always.
The right combination of meds helped me a lot! Don't give up until you find what is right for you.
How do you find a psychiatrist that is knowledgeable about PD so they know what to prescribe?
Hello from Scotland, and a few words from me. I can only say what I experience and feel and I know that my personality type helps, you know the annoyingly cheerful out of bed like tigger.... but even so I can feel sometimes edging on the cliff of darkness, and have to consciously pull back. If I don't interact, engage, do stuff then it gets compounded, and sometimes it takes a lot to make myself 'go out there' into the normal world but its a must. I stopped worrying ages ago about being stripped bare of my skills and things I used to do and instead have rammed my life to the brim with stuff I can manage. It is a dizzying schedule I now have but I love it, and for some reason PD finds it hard to jump on my roundabout.... so try and re-energize old loves, hobbies, plans and chuck in a few new ones! Oh and use the internet not to find out more doom and gloom on PD but seek out inspiration watch TED.com and watch this! youtube.com/watch?v=I9L3grk...
kindest
C
I dont suppose I can add much to whats is being profferred here, but just to let you know we all have our episodes of depression, and as with life and it's ups and downs we just have to get on with it.. At least now you are getting some therapy, but you have to play your part in that therapy get out there and just change things you can, and try to improve on things you can't. I really do wish you all the very best.
yes, depression is all part of it. i was diagnosed in 2009 at 40. i rapidly went down hill. in short.... had to quit job in 2011 and go on disability, can no longer drive, rely solely on cane or walker or my scooter, fall all the time, need assistance when meds are not working in doing normal daily activities, like getting dressed. my doc put me on antidepressments and something else for my anxiety. it helped some, but i really get alot of help n support from hubby and family n friends... that is so important! so please hang in there and take it day by day.. wish you the best of luck! prob for the 1st couple yrs i was severely depressed and i think i was in denial seeing all these different docs, which was a waste of time and quite costly. but then i had a dat scan earlier this yr that pretty much confirmed my diagnosis.
Beware the people who say, "Of course anybody would feel 'sad' with all the changes you have had to make/finding out you've got Parkinson's."
Yes they'd feel sad but depression can be as much a part of the upset brain chemistry of Parkinson's as the other symptoms. Does anybody say, "Stop shaking and you'll feel better?” Or, “Go to bed earlier and stop napping during the day and you wouldn't feel so tired.” Or, “If you just pulled yourself together you could walk without a limp." Some thoughtless and under informed people I am sure, but the majority understand that this is what Parkinson's is about.
Don't fall into the trap of taking meds for your motor symptoms but not for the non motor symptoms. If your Parkinson's meds are not helping with the depression and anxiety try the recommended anti depressants. I know some people will warn you about side effects but as with everything else in Parkinson's reactions are different from person to person.
Depression often comes with feelings of guilt about not being able to control the depression. Who thought of that vicious cycle...? You are not to blame, Parkinson’s is. Taking medication is not a sign of weakness, lack of effort or wanting a short cut, it can be just what is needed.
If the antidepressants work then you can use the psycho therapy to support your mood when you begin to reduce them. You can have both. Be aware of possible side effects but don’t be driven to a standstill by the worry over something that might not happen.
Good luck, antidepressants gave me back my husband and he is off of them now, just two years after beginning them.
Beware the people who say, "Of course anybody would feel 'sad' with all the changes you have had to make/finding out you've got Parkinson's."
Yes they'd feel sad but depression can be as much a part of the upset brain chemistry of Parkinson's as the other symptoms. Does anybody say, "Stop shaking and you'll feel better?” Or, “Go to bed earlier and stop napping during the day and you wouldn't feel so tired.” Or, “If you just pulled yourself together you could walk without a limp." Some thoughtless and under informed people I am sure, but the majority understand that this is what Parkinson's is about.
Don't fall into the trap of taking meds for your motor symptoms but not for the non motor symptoms. If your Parkinson's meds are not helping with the depression and anxiety try the recommended anti depressants. I know some people will warn you about side effects but as with everything else in Parkinson's reactions are different from person to person.
Depression often comes with feelings of guilt about not being able to control the depression. Who thought of that vicious cycle...? You are not to blame, Parkinson’s is. Taking medication is not a sign of weakness, lack of effort or wanting a short cut, it can be just what is needed.
If the antidepressants work then you can use the psycho therapy to support your mood when you begin to reduce them. You can have both. Be aware of possible side effects but don’t be driven to a standstill by the worry over something that might not happen.
Good luck, antidepressants gave me back my husband and he is off of them now, just two years after beginning them.
I have been put on zoloft. It makes a tremendous change in my outlook. My stelevo takes care of my phyical symtoms. The zoloft allows me to participate with family and friends. Keep trying different combos. You will hit upon what is best for you.
His Movement Disorder Specialist immediately started him on Zoloft when we started to see him. It made a big difference and recently it was increased the dose after several years. Depression is part of PD. It is recognizing the signs and starting the right treatment that is important. PD like depression has a chemical imbalance. That is why the meds help. They help restore some of that imbalance and it takes the right doses in the right combinations to work.
I had a bout with terrible depression. Drugs only seemed to make it worse. I finally had a turn-around when my young daughter said: "Daddy you have to have HOPE." Next, I studied what causes depression. I discovered that it is caused by the brain producing a lack of dopamine. Sound familiar? I found a friend that was welling to walk with me every morning for 1 hour at 6:00 AM. In about 3 weeks the depression totally went away. 6 months later PD started. Take it one battle at a time, find a friend, and have HOPE.
I have taken an antidepressant since I was 26yrs. old because I had weakness on my left side and pain in a wheelchair for a year...many many test over the years and neuro's, hospitals etc. I didn't think I WAS depressed back then...I was working and just happy where I was until I was T-boned in my suv which was totaled,a parting gift from my ex-husband. I was ok and released from emergency that day but three weeks later everything changed when I awoke one morning and couldn't move a thing...long story short...I was finally diagnosed young early onset Parkinsons and Dystonia Jan. 12th 2011, my best friend loved to pieces, yellow lab Matilda died the same day I'm diagnosed, my Boss is to scared to have me work and I loose job after moving from parents...(hospital and nursing home then Dad's house 1yr.+).Im....no WAS an artist. I've painted only 3 things in a year. I'm too scared to go for a walk by myself because I might freeze. If I start to say something about Parkinsons to my friends they tend to change the subject and yes that depresses me. That' is why NOW I know I Am Depressed ! I loved working at the gallery !!! I don't like this alone stuff, but my Dad gave me a great gift ...Belle is a 3lb-11oz. teacup chihuahua and loves being held all the time. I wasn't able to have children so She's closest to a baby I could get ! LOL !
I did have a nice lil' B-day from my friend and her daughter yesterday which was a nice surprise...the Big 50 is next year, Man talk about feeling alone !! I'm hiding from that bad boy!
I'm sooooo glad that this site exists so we can get our feelings out ! I thank you for sharing and to let you know these are some great folks to read and be comforted by. Marche'
I have not only PD but also Dysautonomia and yes, I know what depression is like...I fight it every single day of my life. I'm sorry you have to experience these feelings also. I used to do the type of work that required "hands on" approach to everything, and now I can no longer do them due to the hand tremors. My support comes from my faith in God. I am a born again believer and the Holy Spirit lives within me supporting me every step of the way. My advice is to look to the Lord for support and if you have any questions, please contact me through this site and I would be more than happy to lead you in the right direction.
I know exactly how you are feeling. I had the worst case of depression you could imagine!! Only I didn't know what it was at the time. It was that and the medication I was on. I lost 30 pounds and I couldn't sleep for weeks and weeks. I was a mess!! They always say all good things come to an end. I guess that holds true for the bad things.too. Thank God!
Hello Janellen.... I was diagnosed with PD in 2005. Yes I get depressed at times, who doesn't? There is so much going on in our lives that it is hard sometimes to stay "positive." If PD is all we had to fight with "that in itself" would be enough,\..... with all the "side effects" of medications, and postural and other changes our body goes through because of Parkinsons.
Unfortunately, as we go on things seem to "multiply" don't they?.....I'm dealing with severe scoliosis and arthritis, and had cancer surgery....I let myself have "pity-parties" now and then, but realize that there are so many people that have it much worse than me.....Sometimes that's hard to do, but I "draw on my faith" and have come to the conclusion that "Life is beautiful and precious"......so on the "Good Days" I try to "celebrate" just being normal and enjoy the "moment".
When we can, my husband and I go visit our grandchildren, who live in another state.....Grandchildren are the "miracle drug"...when we see them it helps me forget about PD and everything else....and just enjoy being alive!
I was 59 when I was diagnosed in 2003 when I was already taking Seroxat for Depression in around 1999/2000 and I still take the Seroxat today - my GP who was wonderful told me I would probably have to take the "Serotonin boost" for the rest of my life and I am not depressed or anxious at all - easiy stressed as is common with Pd is all
Research has shown that 50% of People with Parkinson's have had previous bouts of Depression
I read a wonderful book that aided my recovery from Depression "How to Stop Worrying and Learn to Start Lliving" by Dale Carnegie - I recommend it to you
Exercise is something else I would recommend - since I started exercise in the gym, particularly weight training, I have been so much better and feel stronger.
You are not alone - as the 20 responses demonstrate - so read the book, take exercise - particularly important to get your heart racing - and let us know how you are in 1 and 3 months
Janellen, You have PD of course you are depressed. When I was dxd age 55 (8yrs ago) I was in the same position as Froggatt55
' I was already taking Seroxat for Depression ...and I still take the Seroxat today - my GP who was wonderful told me I would probably have to take the "Serotonin boost" for the rest of my life'. I believe depression is on a cotinuum like autism. We all experience it to some degree & we manage it differently. Like everything else in PD what works for one may not suit another - so keep plugging away!!
Hi JanellenGranaldi, Looks like you good tons of answers, or everyone has the same problem. I suffer with depression, when I received my diagnosis I went into a deep depression for almost 2 years. I stayed in my room, ate cookies,candy and ice cream, put on 40 lbs. Then one day I can't tell you why I started making phone calls and looking on the inter net. I got a psychiatrist and he game me some medication and sent me to a counselor This has helped me soo much, it is a year later and i how have 2 friends to do things with, I volunteer at the local hospital, I joined the Red Hat Ladies Society,I go out to lunch and I am trying to loose the extra weight that I put on during those 2 years. Life is good, my PD is not completely controlled by my medication so I have contacted and am going to see a new Neurologist this week. I didn't care for the one I had and he was so far away. I have learned to be pro active instead of non active. Everyone has given you good advice, they are all caring,compassionate,kind and gentle I have found. We are all suffering with the same disease but every is in a different place with it. PD seems to be a very personal thing, no 2 people suffer the same.
Thank you all for your supportive responses. I have been on an antidepressant for about a month and started Sinemet with no results yet. I will let you know when I am better. This is such a great site full of such supportive and caring people!
I'm 40 years old . Diagnosed for two years. I have three beautiful daughters and go through weepy spells quite often wondering if I can still be the same Dad I am today in 5, 10, 15 years. I have been teaching for 9 years and may need to transition into another job soon. So there is no way you are alone in this battle Jane!
On a lighter note, are we allowed to call ourselves Parkies? That struck me as cute/funny. I told my wife I am hanging with my Parkies online... she looked at me funnny.
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I've been treated for PD for 16 yrs and have a new Neurologist who doesn't think I have PD because I didn't show "The Signs"
