For those who care for someone with Parkinson's disease
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By happygranny On 2008.11.30 20:44
Hello, My husband ( 72 yrs old)is just Dx'd with PD. It took a long time with a lot of symptoms stumping us and the doctor. Now we know what has been causing him so much grief.
In hind site we now can see that he had the symptoms starting 4-5 years ago, it is just the last 6-8 months that things have spiraled down and esp the last month. It has only been the last week that Parkinson's was mentioned to us as we thought his tremors were "Famial Tremors" like his father had. But he also has constipation, excessive drooling, slow to respond, expressionless face, depression and trouble sleeping with 'crazy' dreams.

We were told he had to see a Neurologist for Dx and treatment, but that was going to be a three week wait and he was getting worse every day.
Yesterday his tremors and ridgitity got so bad and he was so uncomfortable that I brought him to the ER, where a doctor said he had all the symptoms of PD and prescribed Levodopa/Carbidopa - one - 100/25mgs three times a day. It has helped him for short periods of time today, great relief for about 3-4 hours

His reaction to this med is to fall into a deep sleep, which maybe he needs after so long with little sleep, and wake up feeling better but with a headache.

Is this normal when someone is adjusting to the med?

Like I said we do see a neurologist in 3 weeks and maybe he will change the medication or who-knows-what, but in the meantime we have a steep learning curve ahead.

I appreciate finding this board and for any help/advice you can give me.


By bandido1 On 2008.11.30 21:13
happygranny: I am one of several patients who comment on this forum. I just happened to be finishing up on a new project when I noticed your post. Based on what you have provided I believe the preliminary DX is corrrect. What you are seeing from the Levadopa/Carbidopa RX is also very common with us. Other caregivers will shortly pick up your post and provide excellent commentary which should further assist while you await the neuro. I expect one additional Rx to be an agonist (Mirapex or Requip ) which sholuld help somewhat. As my fellow patient always says "Hang in there" Bob C

By happygranny On 2008.11.30 22:43
Thank you for responding so quickly Bandido. I feel so alone with this and it is good to know I am not.

Have you heard of a problem with Mirapex causing excessive behavior (gambling etc)? My daughter-in-law told me she read an article in a magazine about it not being a good drug for PD.


By LOHENGR1N On 2008.12.01 00:28
Hi and welcome to the forum Happygranny, The ER Doctor pretty much nailed down the Dx. Sinemet (Carba/Levodopa) Has been "the gold standard" for years now in Dxing Parkinson's Disease. If you respond to the med, then you've very, very likely got Parkinson's. You said you have an appointment with a Neurologist in 3 weeks? It might be worth a call to the office. Explain to them about the trip to the ER and the Carba/Ldopa. The Neuro may want to try a different medicine to start out with instead of keeping the Sinemet (sometimes they like to save it for a bit later on). Please keep posting and let us know how it's going.Take care, best of luck and hang in there.

By annwood On 2008.12.01 00:37
Welcome to our forum. As you can see there are many of us - patients and caregivers - who are here to help you.

I agree that it is most likely that your husband has PD. Sorry that he had so much trouble before getting diagnosed but now you are on the right track.

The most important thing that you can do is see that neurologist. They are the only ones who should be treating PD and hopefully you will find a dosage of the right meds to help. As for Mirapex, it is a great drug but does result in compulsive behavior for some PD pts. I would go with what the neurologist says and if Mirapex is part of the plan keep an eye on him. It does not affect everyone adversely.

Yes, the role of caregiver is scary, exhausting and lonely. We will be here for you.

By happygranny On 2008.12.01 11:23
Thank you so much for your responses, support and information. Calling the neurologists office is a good idea, I will do that today.

Taking the L/C three times a day is just not enough. After 6 hours he has horrible attacks of pain, rigidity and confusion. I am shocked at how fast this has spiraled down.
Five weeks ago I left him for 2 weeks to visit the grandchildren that give me the "Happygranny" name. He was feeling rough then but able to function, and family was around to help out. He still could drive himself to the grocery store, heat up the meals I had left in the freezer, do laundry etc ( we did not know about Parkinson's then). There is no way he could do that now. I am afraid to leave him alone for more than an hour.

Before we knew about PD and were desperately trying to figure out what was wrong, we had made arrangements for him to see a Geriatrician, and a Geriatric nurse is coming on Thursday of this week to assess him. She might help move things along quicker.

Do some people deteriorate this quickly? I am so frightened and so sad to see this happen to my darling man.


By ihatepd On 2008.12.02 00:50
It is frightening and sad to see the changes that PD can bring about, but hopefully a good neurologist will be able to stabilize things for your husband. My husband, who's 63, was diagnosed with PD seven years ago and it has been a real roller coaster ride. Some weeks have been much, much worse than others. For the last couple of months, he's been doing far better than he was earlier this year. So many things seem to affect how he's doing, but most important are the medications he's on. Just a minor adjustment in meds; or forgetting to take them on time can cause major problems. Rigidity, confusion, depression, tremors, horrible dreams, falls, irritability, anger outbursts, personality changes, problems with walking and gambling are just a few of the issues he's faced. Some are because of the disease, some are because of medications prescribed for the disease. But, while there have been periods where each problem I've mentioned has been bad, adjustments in medication have helped to make them manageable. That's why he's still able to work and drive. It's so important to have a neurologist who specializes in PD and who's willing to try different drugs and dosage combinations to find the right one for each patient. The drug combination needs to be tweaked every now and then when it's no longer effective and you should feel comfortable calling the neuro if you think a tweaking is in order! The first neurologist my husband went to was uncaring and out of touch with the latest thinking on PD. The neurologist he sees now inspires much more confidence. By the way, he also sees a psychiatrist who's helped him deal with the depression and other emotional issues surrounding PD. And, as I've mentioned on this site previously, he's also found that taking pilates classes has helped him with balance, rigidity and walking issues.
I will keep you in my thoughts and prayers and hope you find this site to be as helpful and comforting as I have.

By ridingthewave On 2008.12.02 08:25
Dearest Happygranny,
I can't add anything more to what has already been said. You are in the right place for support, information, and a shoulder to cry on.

My husband will be 60 this coming July & was diagnosed in 1999. He is doing well, can still function fairly well; however I live with the knowledge that this can change and his independence will become non-existant.

Hopefully you get a neuro as great as my husbands. He is knowledgeable, caring of him as more than just a patient & welcoming to me. I no longer go to every appointment, unless I want to ensure that he is told about some thing or things. The two of them get joking around & my husband doesn't tell him things. However, the doc is very astute.

You are not alone.

By happygranny On 2008.12.02 22:42
Yes, I am so thankful to have found this board and have learned a lot already. I do hope the neurologist 'we' are booked to see Dec 17th is who we need to see. I would not want to add doctor searching to my load that is for sure.


By ridingthewave On 2008.12.03 15:10
The neurologist is an important player so make sure he/she listens, hears the concerns, is responsive and knowledgeable, and last but not least,is receptive to your presence as the caregiver.

The first neurologist my husband was referred to by his GP created a nightmare for my husband. He diagnosed him with pd without any testing, gave him a prescription and sent him home. Luckily I am a sceptic and called his GP, told him what happened & requested a new referral. He now has a wonderful neuro who meets all the criteria any patient and caregiver could want.

So if this neuro is not to your liking, go back to your husband's GP and meet another one.

Best wishes

By sube On 2008.12.03 19:29
Happygranny, Welcome! I just wanted to put my 2 cents worth in. This site is everything you could hope for, so many caring and supportive people. there is no need to feel alone because you now have us. Believe me, I've talked about everything,cried some,and am learnimg to laugh again.We are all on the same path,maybe different degrees, But here just the same. Most people don't understand or worse yet avoid us like nothing is going on, they arn't mean,they just don't know what to say. I did'nt either until I found my self smack dab in theP.D. merry-go-round. So hang in there, and keep in touch, We all need each other. Sube

By happygranny On 2008.12.06 23:53
Thanks for the warm welcomes everyone. We are still having a lot of trouble with his painful spasms in his arms and ahoulders and upper back, and hopefully the increase in sinemet will help.


By Mary On 2008.12.18 16:09
Hello! I am new to this forum. Just joined today and find myself having a hard time leaving the forum and getting some work done. This is a wonderful site and I apprecaite everyone's input.

I am caring for my 75-year old father for six months now. He was diagnosed with Parkinson's Disease about five years ago but he, of course, had symptoms long before he was diagnosed. My Aunt wanted to do an alcohol intervention on him because of some of his symptoms early on. It was hard for my father to be diagnosed but yet some relief so his symptoms could be addressed.

I have come a long way in adjusting to caring for Dad. I did not know what I was getting into but we have worked out a routine in the day and that really helps. I work full time, have three children but they are older and helpful. My daughter struggles with Dad in our home and feels he is being selfish to want to live with us and belongs in a nursing home. I can't help but feel disappointed in her. My two sons are terrific and wonderful with Dad. I hope the kids get something of value out of their experience with their Grandfather in their home.

Happy holidays, Mary

By misba On 2009.01.19 02:24 [Edit]
The Parkinson's Disease Society (PDS) today welcomed Alan Johnson's announcement to allow patients to self-refer to physiotherapists and allied health professionals.

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By heresunil On 2009.01.23 03:29 [Edit]
Dear Mary:

Researchers are working hard to increase our understanding of Parkinsonís disease. Parkinsonís are currently unknown. However researchers believe that by understanding who is more likely to develop the condition we are better able to prevent it.

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