For those who care for someone with Parkinson's disease
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By GladIhavehorses On 2013.01.05 00:29
My husband was diagnosed 4 years ago. He is affected on one side right now but I have noticed a slight tremor on the other side although he won't admit to it. when he was first diagnosed we got as much material on the disease as we could and talked to his nero about what could expect for the long term and we got the standard " Every body is different" . Well that doest help me in planning for the future. We are in the middle of expanding our horse breeding hobby and I need to know will this be possible. He is able to do some chores as of now but tires easily. Will I have to give up the farm because he will require too much care and when will this become a issue. No one wants to give me a time line as to when he becomes a stage 4. Anyone out there willing to be blunt enough to tell me the truth.

By LOHENGR1N On 2013.01.05 01:42
GladIhavehorses, You got told the truth everyone is different. A time line, I'm sorry you're not going to find one that is set in stone! You asked if anyone out there is blunt enough to tell you the truth. Well I guess I can be but many don't quite ask for that. Here's the truth I was diagnosed at age 33 I'm 60 now. I've been posting on this forum since the end of January 2003. During that time I've written too many letters of condolences to families of friends here on the forum and "out here" in the world. Many Who were diagnosed after myself, too, too many. Everyone is different and progresses differently with symptoms, side-effects of medication and time wise. One thing for certain Parkinson's Disease will kill us in the end barring getting struck by lightening or hit by a bus or the other many myriad of accidents out there. One thing you can count upon is Parkinson's progressing at it's own time frame. So being blunt or not I can't tell you if you can expand your hobby of breeding horses or the farm. I can tell you that in time an unknown time He will progress to where He won't be able to help out, that is if He lives long enough. And that is another thing I can tell you bluntly, He has no life after Parkinson's Disease You do. I apologize if I've been too blunt and offended anyone with this post. We patients have also had any and all plans devastated by this disease too! I know and can sympathize with you caregivers/partners who find your lives in disarray and not what you wanted or ever imagined. We patients are trapper in these bodies going horribly wrong trying to life as best we can. One thing I've always done on this forum is tell the truth, it's gotten me into hot water at times with some but I won't lie about this disease it's affects it's course or anything else about it. Take care, best of luck and hang in there. Again we're all in this together.

Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By jcoff012 On 2013.01.05 18:10
Glad, I think Al tried to explain this very question in an earlier post. Since he is/has been living with PD, he is a great source of information.

Frankly, I am glad to hear the truth, but my PWP and I don't ask those questions about the future...we live in the day, not in the future. No one can predict the future.

For example, my MIL had PD for 22 years and never had a tremor, not one...and was bright and funny to the end. My husband is still bright and funny, but is declining quickly and his tremors are worsening...and now he has arthritis in his back and...well, a possible other health issue that we will face on Tuesday...or, maybe we will finally get some good news...we'll see...

We just alter our plans and don't count on anything...this crappy disease has no sense of direction, no answers to our questions. We accept health issues as they arise, and, man, we have had more than our share in the last seven years...

Al, you will appreciate this...on our way home from Modesto (south of here), he said, "Let's stop at the outlet stores." Remember, the last time, about a month ago, we stopped? Anyhow, as we got out of the truck, he said, "You know, I think it's time we got handicapped placards for the car and for your leg and one for my PD...I am getting tired faster and faster now..." I was shocked, but said, "OK. I'll look into it."

Those little inroads are heartening to me...he wants to remain in charge of his health issues as long as possible, but is learning it is ok to use assistance. Yea!

Here's today's funny...we just got home after two days, and in the mail was a bill for $1.60 as our part of the payment for his latest xrays! Imagine that! lolol Jane

By mylove On 2013.01.05 22:39
He (and you!) will LOVE your placard. We broke down and got ours, and even though we don't use it all the time, when we need it it's a godsend! Imagine Christmas, at the mall, in a foot of snow. It was SO nice to be able to be up front where it wasn't such a wrestling match just to get in and out of the car. And when he'd had enough it wasn't a half a mile just to get back to the vehicle. We felt a little weird at first, but by golly we don't anymore!

By jcoff012 On 2013.01.05 22:59
Michelle, here in CA there are so many rules for's amazing how difficult our govt. nd state agencies make things!

By cmonge On 2013.01.06 10:58
Finally, someone who is blunt and tells it like it is. That's all I have ever asked for and no one will do it. Yes the disease will kill you--why doesn't anyone just say that! And yes, it sucks, not just for the person with it but for the caregiver as well. My advice is to slow down not expand on your horse breeding, because trust me, your husband is not going to be able to help you as he progresses, and he will progress. You don't want to be stuck with something you can't handle by yourself. I have a 1600 sq. ft. house that is even becoming too much for me as I have to work full time and my husband can't do anything around the house much anymore. I want to sell but the market is lousy. Also, get ready because the personality changes will frustrate you and try your patience to the bitter end. You will need to find time to relax and get away--not find more stress. I personally am at the end of my rope. Tons of therapy and outlets help but this disease has really taken its toll.

By LOHENGR1N On 2013.01.06 15:39
Jcoff, Yes I'm glad to hear your husband suggested placards for parking. Here in Massachusetts it can be pretty intimadating to ask DMV for handicap permit also. If you have them send the form to you in the mail bring it to the doctors next visit and ask them to fill it out and sign it you might find it easier. Here's a hint/trick I learned....ask the doc without having the form in sight. If they agree pull it out have them go over it with you (takes less then 5 minutes) sign it and send it in! Sometimes one Doctor will say oh no I think it will be better for you if you walk the distance to keep active you don't really need it right now. (My Neurologist did this years ago to me. So I took it to my next Primary care Doctors appointment asked Him...he asked me if I thought I needed it? I said yes. No problem he filled it out signed it and handed it back to me to send in. Many don't take into consideration it's not only the walk into the store or mall, It's all the walking around inside then ontop of that we have to walk all the way back to the parking spot. Good luck! I'm glad He's coming around to helping manage his situation and wanting to help in that. Take care, best of luck and hang in there

By Lynnie2 On 2013.01.06 16:54
My husband also tires easily and thankfully he retired at an early age and we moved to town. I hate to say it but if your husband tires easily now, then it won't get any better and it will get worse. You didn't say how old your husband is but if you expand your business, it will be more work, not less and could end up being more work for you.
Stress is a big factor with Parkinson's, so it will affect your husband in different ways. My husband has more tremors when under stress and his ability to remember words when talking is affected when he's under stress. These are just a few of his symptoms I am sorry to say.

By lilflower On 2013.01.06 21:05
One day at a time, one step at a time, excepting each change as it comes and doing your best to stay strong. My hubby is going on about 22 years of Parkinsons and this last year has been a test for sure. We're both young he is 62 I'm 58 but the disease takes hold of you both, it's something you go through together so rest when he does and be alert at all times. I had to leave my job almost ten years ago to be a fulltime caregiver. Yes the stress is high but you find something that brings you a calm or a peace and make sure you find time for yourself even if its a moment here and there.

By jcoff012 On 2013.01.06 22:27
Lilflower, you are a wonder...22 years! What an amazingly loving person you must be! Thank you for posting! Jane

By GladIhavehorses On 2013.01.10 00:14
Thank you, thank you everyone for helping me face some hard facts and decisions. I think I knew the answers all along but kept on getting sugar coated answers from the doctors. I know that I can handle all the work that is involved in the care of the horses we have now, but without his help it would be a struggle if we increased our herd. These horses are something we both enjoy so much and had sooooo many plans for future foals and shows. He would be devestated he knew we had to give up our dream. I didn't want to get stuck in a situation where I had to make some painful choices. So at least now I have some idea as to where we go from here. After reading some of the post of other caregivers who have been dealing with is dam disease for a longer period I realize I am going to have bigger problems to deal with down the road. Thanks.

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