My husband was diagnosed with Parkinson's on January 26.
I'm worried about him and his overall adaptation to the news. I know it's real early for anyone to take this in and adapt to it, but here's the reason I'm more worried than maybe I should be:
He tells me that the Sinemet & Azilect help him with things like writing faster, (he has tiny difficult writing) and lots of other movements in which he said he now feels more "fluid" -- his movements are more connected now than before the medicine. Then again, I just see him before he leaves for work, & after he gets home. Early mornings are difficult and of course he's very tired after work. Also he lies on the couch in his spare time, and though he may get a temporary (1 second) laugh from a television program, I can see a sad or helpless mood return quickly -- relief from this awful feeling for him is only momentary.
From reading this board I'm thinking maybe the end of the day is harder for everyone, but also I'm wondering if he has depression, and worries about the future (he has said he dreads it) I'm not going to suggest antidepressants. He's on a lot of medications and his doctor is smarter than I am, I'm sure!
But I can't stand to see him without his spirit. I feel like he was better the day before he got his diagnosis than 3 weeks afterwards, even on the 2 medications (that's just an observation about his moods, not necessarily about his ease of movement). He's on Sinement and Azilect-- Sinement 25/100 3 times per day & 1 mg Azilect. He's 62 & I'm 60. We have been spending more time together and of course I'm much more sensistive to him but only as long as there is close involvement or for example, at work he's intensely busy, do I see him being normal again. I don't mean normal in his movements, but normal in his moods.
Does anyone have any comments that might help me understand or perhaps assure me that things will get better? He still goes to work everyday, drives, has had no accidents in years... He's a good looking guy with a great sense of humor -- even about this sometimes.
You said in another post that he had disk surgery. Where? Did the PD symptoms start after or before? I was told that nerves take a long time to heal. Frankly I've still seen improvement in the nervous system symptoms over two years post op. My main PD symptom before my c-spine surgery was lack of arm swing but I have one doc I'm seeing now that thinks that all my problems are central spine. I take very low doses of Requip and Azilect and I'm thinking of asking my motion disorder specialist if I can try going off the meds and see what happens.
PS - I'm only 50 (ok 51 this week) and I own my own consulting business so I work 50-70 hrs a week.
Last edited by sunshine221; 02-16-2009 at 04:53 AM.
Reason: add PS
I dont know which disk but it was in about the waist area. His symptoms seem so much worse since the surgery, mainly his energy level, but before the surgery he had the symptoms of micrographia, difficult movement, soft and weak voice, stuttering, delay in answering questions, stooped posture when walking, & lack of arm swing, weight loss. I could name many more but if you just look at the classic parkinson's picture, he has it. He had a heart catheterization in 2005 and was afterwards put on many meds for angina, BP and cholesterol. I thought THAT was the problem, all those meds since I can trace the origin of when he got them to about then, except the vivid dreaming & acting out of dreams, which he's had for years.
The disk surgery was in March of 2008.
He stil works, but some days are better than others. I think a lot of his difficulty during the day depends on whether he gets a good night of sleep. Thank you for your response, I appreciate it.
What type of doctor does he see? Yes the symptoms sound "textbook" but I'm surprised they started him on Sinemet and not Requip or MIrapax first but perhaps there's a reason because of his other issues. I live in a rural area so I see a local neurologist but I also see a special neurologist who is a motion disorder specialist in a teaching hospital a few hours away. ON the other hand, I've also been seeing a physiatrist (MD Physical Therapist) who believes that my problems may all still be from my neck (C-spine) including the lack of arm swing which started before my c-spine surgery and is very typically PD. I see him again today so we'll see. I've been having a few bad days, my knee isn't bending and I've been having tremors for the first time in ages but l took last night off of work and just rested flat on my back and it helped which leads me to blame the spine.
Stay supportive of him, its frustrating!!
Sunshine, I was intrigued with the statement your doctor seems to think the lack of arm swing was due to C-spine issues. I hope you get some encouraging answers when you see the specialist. My main symptom is the lack of arm swing on the right side for which I saw an orthopedist. Other than tilting my head side to side and asking if I experienced tingling etc, that was it. What made your doctor suspect the C area? Thanks.
Clsc, it sure sounds like your husband is depressed as you suspect which is understandable with the diagnosis right on the heels of other health issues. Is he willing to see a therapist for counsuling to be assessed for his mental condition? He has everything to gain to help you both get as much quality of life back as you can. I am impressed with Michael J. Fox's positive attitude in light of his disease and I try to remember his attitude when I get down. I am still in the dianosis stage as the symptoms are all over the place but just hearing PD depressed me. I'm 60 as well. See if you can get your husband to seek help. Best wishes!
Last edited by inspectormoe; 02-22-2009 at 10:58 AM.
I'm sorry to hear about your husband. My dad had parkinsons. I think it's good that your husband still drives and still works. That's so important to stay active and stay productive. After my dad retired, he went downhill quicker, just watched TV and became more depressed. I'd encourage him as much as possible to stay physically active. Are there any support groups in your area?
Thank you all for your replies. He has started reading about PD himself; before this he was sort of too numb to research it. We see his doctor Monday, and I think if the doctor thinks he has depression he will suggest medication for it however --yes he's on a lot of meds, for BP cholesterol & angina also.
He's active at his job & has to keep facts and figures in his head all the time, answers the phone from 7 AM till 9 PM at night, and does not sit in an office more than 50% of the workday is out in the field. But we do watch a movie at night or Letterman & Leno.
Sunshine, he's seen a good neurologist but I'm thinking of asking him to go to the University Hospital Movement Disorders Center for another evaluation, though he feels overwhelmed by all this right now.
Reason he's on both Sinemet & Azilect? Well I read about the ADAGIO trial before he was diagnosed & because of the good reports, I asked hte doctor about it, and he was glad to give it to him though I dont know if his doctor believes it slows the progression of PD or not. The doctor's choice was Sinemet so of course we went with that, & doctor feels it's OK for him to have both. He's been having a lot of muscle soreness in the backs of his legs last few days, nothing like this before the medications.
Meanwhile, the doctor told us there is deep brain stimulation if levodopa no longer works or has too many side effects. I really do not know why he did not start him on Mirapex or Requip but many say that does not help them. We know he's had this for a few years so maybe the doctor thought it was indicated for him at this time.
Thank you all again, you're very kind. We have found 2 support groups but they are slow in getting back to us. I talked to a freind whose co-worker's husband has had it for 10 years, and he is 65, and they have been to Emory to seek treatment for him. She volunteered to call me next week to explain how & what they've been doing. I'm interested in whatever cutting edge thing there is, but think maybe this is the best, what he's already getting. ANyway I think the doctor will talk to us more Monday because he felt we needed time for this to "sink in" in January
Adagio was a clinical trial to study the medication rasaligine/Azilect. This medication has been referenced in at least 3 other threads, so what I'm writing here should be OK, I hope(!)
I do not want to break any rules. I am not advertising, am just a regular citizen with a spouse who has PD. I have no business interests. When researching medications for PD online, I found the article.
If I weren't concerned about getting "points" from a moderator, I would post the whole thing, but I just read the rules again & afraid to post a link or post the whole article. Right now having communication with people who can help me help my spouse who has PD is very important. About the article: I don't even know the date of it, probably Fall of 2008, but it's still on the web.
Israeli company develops drug proven to slow progression of Parkinson's
By Yoram Gabison, TheMarker Correspondent, and AP
Azilect not only ameliorates the symptoms of Parkinson's disease - it has been proven to slows the disease's progression, Teva Pharmaceutical Industries announced Tuesday.
Clsc, thank you for clarifying the information. I would hope the information you shared is consistent with the intent of this forum to provide information that can be of benefit and not looked upon as referrals or advertisement. It would be a leap of imagination to make the assumption from what you have stated.
I will do a websearch for PD information and I sure hope any new and critical information that is breaking news can be shared on the forum as so many could be helped.
I was glad to read in your earlier post that your husband is starting to take an interest in things once again. The diagnosis of PD on the heels of other health issues can be hard to accept. I wish him well and lets hope there is a cure or a good treatment option soon!