Sparky

[Retireat64]

65, married, diag 1 1/2 years ago. On carb/leva, nemenda, exelon, lexapro,clozapam. Diag with depression, possible chemical poisioning, dementia, sleep apnea first. Slowed way down, on disability, unsteady at times, unmotivated, can't do numbers, building, fixing things like I could. Unmotivated and not much interest in things I loved doing. Days are long, don't feel needed, feel left out, less intimacy with my wife, want to work but can't, lost retirement money before I knew I was having trouble figuring our finances. Watch a lot of tv, hate what the worlds has become to, hate where I live. Have two dogs I love. Not much to look forward to.

[Hidden]

67, married, diag 2 1/2 years ago. No medications; Meds seem to be a vicious cycle.

Slowed way down, NO disability, on social security retirement, unsteady at times, unmotivated, can't do numbers, building, fixing things like I could. Unmotivated and not much interest in things I loved doing. Days are long, don't feel needed, feel left out, less intimacy with my wife, do not want to work but can. I do not watch a lot of tv, I spend my days listening to radio (Rush Limbaugh and Michael Savage); hate what the world and Republican Party has come to, love where I live. Have one dog (wife's) and six cats (mine), I love. Not much to look forward to. See Retireat64, you are not isolated. You have friends through HU.

[racerCP in reply to Hidden]

Hi Roypop,

I am surprised at your current post because you are one of the outstanding contributors to this site and I always learn something intelligent and useful from your posts. Your research and input are particularly relevant to me as I do not take any medications as well and am interested in current knowledge to deal with a cure, which may not be forthcoming in my lifetime. I am 75, almost and am thrilled to be alive, that I still have all my limbs and can move them although with a lot of instructions from what has been termed the conscious brain, if I have one. When I first go out for my exercise I think I can't do it but then I see others running, walking, moving and my body wants to imitate, just natural and before I know it I have accomplished my first task of the day to move 'normally'. I just have to will myself to do things. I feel lucky to have an excuse to pay attention to myself and to have the time to be of use to others. There are many diseases and conditions far worse than Parkinsons. I have had to accept myself as I am right now and go from there as a person with a "use by" date, I just don't know that date so I keep 'using'.

Keep contributing and make friends with your conscious mind to tell you what to do.l

[Hidden in reply to racerCP]

I hope your "surprise" was not one of disapproval. I wanted to show Retireat64 that we have much in common. That we fully understand what he is going through. We Parks have more empathy than may be found with many neuros or physicians.

[racerCP in reply to Hidden]

I had the suspicion that you were responding in empathy because of the exact verbiage but then......we do in spite of the human condition which has many limitations. Re sympathy and neuros..every time I go to my neuro, a well-known movement specialist of some repute, he indicates I am doing well, no need for meds but reminds me emphatically, "The day will come" maybe "sooner than later".....it is like he is waiting for my decline.

Keep up the good work.

[Hidden in reply to racerCP]

Oh! "the exact verbiage". No, No. I placed my description from his words. Showing how similar we are. What we share.

[Retireat64 in reply to Hidden]

We do have some things in common. I watch Fox news. Like Rush L. Not so proud to be a republican lately. Love my dogs. Disability was before PD, lots of surgeries. My few best buddies have died. I had a scary day. I went to the dr., then pharmacy, then publix, had no prescription, no groceries and could not find my truck! i may have mixed up my pills. So tired! Helps,to know others in same boat.

[Hidden in reply to Retireat64]

POTUS Trump:

Haters, socialists, libs, dems, leftists, communists will attack him personally. The faux Republicans will do the cowardly fold. If we can raise Red Blooded, true Patriots to vote, the USA may survive.....Be Great Again.

[Retireat64 in reply to Hidden]

Amen!

[metacognito in reply to Hidden]

"If" indeed, RP... with the burgeoning masses of low-info voters, together with the ever-growing number of dependents of purposely lax gov-entitlement programs, that's a very BIG "if (nice to catch you in a moment of optimism however).

[12stargate]

DearSparky;

Oh dear. You were not diagnosed that long ago!!

Is it possible you are still reeling from the diagnosis??

I know I went into a tailspin for 4-5 years.

Parkinson's is a frightening diagnosis.

And you can not give in to it for very long.

Keep coming to this site. There are a lot of wonderful people here

that will give you lots of hope!

I have good days and bad days, and I hang my head somewhat on the bad days. And the good days I cherish!!

Most of all, don't give in to PD!!!

Exerecise is the best thing in the world for it.

Keep coming back here.

Hugs and love from Eva G.

[laglag]

I'm so sorry you are feeling so down. Have you talked to your doctor recently about how you are feeling? Maybe the Lexapro is not the right anti-depressant for you. Sometimes you have to experiment. You haven't been diagnosed too long, do you like your doctor? You might try one that specializes in movement disorders. PD is not the end of the world, it's very frustrating, but if you make up your mind you can still have a good life. Find a support group so you can talk to others about how you feel. Chances are, they've been there & can give you some suggestions & they will understand. Another important thing is to exercise. I know you don't feel motivated but you just have to make yourself. It WILL help. Go walking with your wife & talk to her about your feelings. Maybe she's feeling down also & needs to talk. Also try to find an active exercise group. Research has shown that exercise helps PD & improves your mood. Examples: fast walking, cycling, dancing, ping-pong, tai chi, & my favorite is non-contact boxing. I've been going to Rock Steady Boxing (non-profit) for 8 years & it has definitely helped me. The exercise helps & it's like a support group because it's only for PwP's so you can go there & everyone knows how you feel. I was diagnosed 12 yrs ago at 46 & have had breast cancer in between. If I can do it you can too! Make yourself do something & you'll start feeling better. Check out rocksteadyboxing.org & see if there is one close to you. If you are having financial problems, they may be able to give you a break. Don't give up, keep fighting!

[laglag]

Another thing, Royprop posted something the other day that looks very interesting. It's about watching webinars on MJ Fox's website. They have one on depression & many others that might help & give you some things to think about and/or try. And like RoyProp & 12Stargate said, this website, HU, is very helpful.

[Lincpolio]

Husbands first symptoms were in 1994.... not diagnosed till 31.12.2000. Has got Post Polio Syndrome and Mixed Sleep Apnoea as well and had heart attack with stents fitted last December.

Oh he is not doing too badly, considering everything, and we are off to a Festival and camping with breakdown beds for a few days soon and we both use electric wheels now.

From our experience.. there are anti depressants that sent him wappy, and the changes were sometimes made stop this and take that and that was worse... Read all info on the drugs and do a drug interaction check yourself. Dont rely on staff to be aware.

Heart attack time in hospital given blood pressure meds that had an interaction possibility with one of his Parkinsons Drugs.. I had done drug check found out and asked if they could be given an hour apart. Not on ward time - oh I was giving him his Parkinsons meds on his time scale - they were just providing the new ones on theirs... Second night I forgot about it and the ward drug round was late.... only 35 mins and his blood pressure went through the floor. Thankfully I was able to remind them of the info and regular monitoring and he gradually pickde up... Tough night for me - I refuse to leave him because I have saved so many issues like this from escalating - but he is doing better since the stents.

My advice, get someone to help you get out and do stuff that you always liked doing.. we also do Western Re-enactments and Car Boot Sales and Antique Fairs... use electric wheels to save energy and do loads loads MORE... and talk to others in similar positions and talk to your wife - suggest 2 mins each - about all the things that worry you and her. We do do our best for our partners but it is not always easy and I also have Post Polio Syndrome with pain, fatigue and functional decline...

Reminder.. his first symptoms were in 94, not diagnosed till 2000, and its now 2015...

oh and protein and dopamine meds do not mix. Take protein an hour before or after these meds and if its cow protein its two hours... Protein reduces the absorption rate. Advice From Dr. Terry Petrella in Sarasota Florida about 10 years ago and its been the best advice ever because by doing this we delayed increase in doses for four years and so have stuck to this advice.

Hope this helps.. hubby is now 64.

[paddyfields]

Sometimes lack of motivation is mistaken for depression whereas what is wrong is that Parkinson's (lack of dopamine) has left you without the mental get up and go and the ability to enjoy something when you finally get around to it. So the anti depressive medication may not be helping. "Sometimes I sits and thinks and sometimes I just sits" - ought to be said in a slow country yokel accent. I could sit a whole day without any inclination to do anything in the run-up to my diagnosis.

So you need to take the meds or do exercise - preferably both.

Use it or lose it - doing nothing is not really an option.

You do not explain what has set you against meds. You can share in the experience of others on this site which is useful because everyone's PD is different and effectively everyone has to research and manage their own condition.

Best wishes

[JeanieBeanie]

My husband is 65 and was diagnosed at 44. He has had DBS.

First, I wont preach to you. I will just try and let you know how we cope. My husband has walking difficulties and like you sits watching tv all day when we are at home. He can't exercise because his balance is bad and his walking worse. The DBS made his walking worse. Despite this we have a good life because I make sure we do. We record good things to watch on tv ( he's just watched three series of Breaking Bad one after the other though maybe this isn't the series to watch if suffering depression) and I cook a nice meal with a nice bottle of wine. We have good tv in the UK. Apart from this we go on holiday a lot. Five times a year. We budget for this because my husband is much better abroad. Not because his symptoms are better but because he has an incentive to do it. He has to walk to the pool, bar, restaurant. We are not rich but I have found the same places we go back to and we are loyal. Sunshine is a real tonic and if you live in a poor climate it is essential to get vitamin D.

As for meds, my husband takes one silegiline( which helps with mood) and was a wonder drug when my husband was diagnosed and he wouldnt be without it) madopar to bring him on and sinemet and sinemet cr. He has been taking LDN since January and he is feeling optimistic. If you live in the States you can get this easily. In the UK there is a website called LDN Trust that tells you where you can get it but we have a young GP who is very good and prescribed it.

We do all this despite my husband being a victim of the dopa-agonists in 2005 when he gambled all our savings away and some of his private pension.

Last but not least, a good Parkinsons nurse is better than a doctor. Ours told us about the protein 10 years after my husband had been diagnosed. No doctor told him this.

I really sympathise so I hope this helps. Email if you need to.

[JohnPepper]

Hi Retiredat64. Life is what you make of it! It is no use looking back at what was, as there is nothing you can do about it now!

You get out what you have put in in this world, no more and no less.

Having said all these cliche's I must say I don't envy you. Have you ever thought of writing your own memoirs? You may find it, as I have, very therapeutic. I realized many of the mistakes I have made and have made sure that I don't ever repeat them again. I have written books on Pd and the history of my company, which my late wife and I founded in 1970. Nobody is going to read my memoirs or the history of my company but it was time consuming and very enjoyable.

If you look around you, you will find many people who are in dire need of help, not necessarily of a monetary nature, but need someone to give of their time and experience. You may be surprised at how useful you are to people outside of your family circle, where they don't know you as well as your family think they do.

In churches and clubs they are always looking for people who can perform very necessary functions, for which they are not always able to pay, but you need something to fill your time, and not necessarily your pockets.

Just give it some thought and stop feeling sorry for yourself.

Kind regards

John

[Mollyjane11]

You are a child of God. He loves you and wants you to feel it. May you find a bit of peace everyday,

[Retireat64 in reply to Mollyjane11]

Thank you. I am a child and in that I rest. I was on a pity party I know. I saw A new dr today and going to wear me off couple of meds, thinks I'm over medicated. Also tactfully told me we are all going to die, just a matter of when. I need a plan for the future cause I'll probably be here. Told me to study and learn something new. Read not for entertainment but for knowledge and using my brain. Don't use it, lose it! For an hour a day! And work, volunteer or help and make a difference 3 days a week. For me its about feeling useful and needed, being productive. He hit the nail on the head. So much easier to just do what i used to do and love that I can no longer do. Change is hard and I'm not to good at trying new things so this will be a big change and step for me. I did go to the library and checked out 3 books. Pd has no cure but there are lots of things I can do to slow it down and have a life, or so he says. Not the one I choose but better than now. Pray I can walk the walk.

[Mollyjane11 in reply to Retireat64]

Great advice. Good luck and you're in my prayers. You can do it.

[Bonnie51462]

Hi all diagnosed almost a year now...I know what Sparky is going through as do we all...I myself try and keep motivated but it can be hard there are days I just drift by no motivation, I wouldn't call it depression (I know that well) just days you just can't connect, days when I feel like the world is spinning by and I'm just stuck...Yesterday went shopping, today can't even get the gumption to get me a cup of coffee...take the good and just be gentle with yourself on the bad...

[tobykeith]

I was diagnosed in May of 2014. My main problem is my balance and unsteady gait. I do have good days and days that are not so good. Try to stay as active as possible. I completed the LSVT Big and Loud therapy. It helped me so much. I also go once a week for a BIG class. My daughter and I have organized a support group for our town. I have volunteered at our hospital for 18 years and I continue to do that once a week. I attend church on a regular basis. I take Sinemet, Azilect and Gabapentin for my Parky.

I take Zoloft for depression. I take one day at a time and do not dwell on progression of this disease. I have wonderful family support. There is life with Parkinson's.

[adrienneb]

There is a John Denver song that plays in my head over and over when I am having one of those down days:

"Some days are diamonds, some days are stones.

Sometimes the hard times won't leave me alone.

Sometimes the cold wind puts a chill in my bones

Somedays are diamonds. Some days are stones."

If you google it, you can hear him sing it. I think it has become an "earworm" for me, and somehow gives me hope that some diamond days are going to come. And they do.

Thanks to everyone who shares their experience on this site. You are my heroes!

[Retireat64]

Thank you and God bless!