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#101 Golden01

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Posted 02 August 2014 - 08:19 AM

You are right, this is a safe place to come. That day of getting the diagnosis is a hard one. My husband was diagnosed in 2005, his experience has been that when things suddenly get worse, there is often something else going on that causes the PD symptoms to worsen (thyroid problem, infection, etc.) and once that problem is addressed, the PD symptoms go back to "usual" with slow progression. For him, nothing with PD happens fast. It does make him slower though. Is your neurologist a Movement Disorder Specialist (MDS)? Many on these forums recommend seeing an MDS if you can. 

 

Welcome to a safe place where I know you can find support and information. 


Edited by Golden01, 02 August 2014 - 08:19 AM.


#102 Rannei

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Posted 13 August 2014 - 12:36 PM

Hello, I too am a new member.  My DH was diagnosed just this last January.  He was laid off back in 2009 and we of course lost our medical insurance but we were in decent health so we didn't worry too much. However I did notice he was shaking a lot more than he used to but I thought it was just that he drinks too much coffee, his mom did too.  Then this last January we once again got health insurance and my SIL suggested he go see a doctor to see if maybe he might have Parkinson's.  She had taken a course to be a medical assistant so I though I would ask his PCD to see what she thought.  She said it was possible so we went to see a neurologist.  Needless to say he diagnosed my DH in just a few minutes.  At first I thought 'Oh good, now he can get some pills and he'll be good as new!'. I had no idea what Parkinson's is. After a couple of visits his neurologist estimates he has been developing the disease since about 2006.  He was having trouble at work following new directions and changes that were implemented. Then after he was laid off he went to school to learn computer programming, he used to love playing with computers.  But he struggled with  this and he was not able to complete the program.  He turned 62 about the same time as his unemployment was exhausted so he decided to just start his Social Security.  I thought he was just tired of working and was frustrated with all the changes going on and thought a few months off would be OK, he could still get a small job once he had rested for a while.  But he only got more and more involved with the TV.  He had enjoyed riding his lawn tractor and working in the yard but no longer.  He also has a bad back and found he couldn't ride the mower for more than 5 minutes or so at a time.  By this time we had sold the house we lived in to help bring down the financial obligations and we bought a smaller house with a smaller yard.  He still couldn't stay on the mower for more than the 5 minutes and one of our neighbors offered to mow our yard if he could use the mower for his yard as well.  So the yard got taken care of.  But then my DH seemed to go deeper into his TV watching and now napping as well.  Last month he finally had back surgery to help with a pinched nerve and now with the meds he takes for that he is even worse mentally.  I talked with the surgeon and I cut back on the Oxi but he does need some at least for another few days.  I am hoping that once he is off the Oxi and Vicodin he will go back to his regular level of some confusion but not so muddled.  He has taken to removing his clothing and walking around, I keep sending him back to put his clothes on as we do have our daughter, her DH and son living with us and running around in your underwear is just not acceptable :)  He was going with me to visit my parents who are very elderly but since his surgery I haven't been comfortable leaving him alone and he says he doesn't want to ride in the car as he is concerned about his back hurting.  My parents are very understanding and I will probably have to see if my SIL can drive them up to my place since it may be a while before he can feel comfortable riding anywhere.  

 

I'm sorry if I rambled but I wasn't sure how else to say what my situation is.  I would be ever so grateful for any suggestions or comments!

 

Rannei



#103 Rannei

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Posted 13 August 2014 - 12:38 PM

I don't know if he is also a MDS but I will ask.  I do know he also works with sleep disorders.

 

Rannei



#104 old+slow

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Posted 13 August 2014 - 01:43 PM

Is your DH on med's for the PD? The reason I ask is because if he is, sometimes mixing other meds with our PD meds can cause adverse reactions. I learned this the hard way myself. Unfortunately some doctors don't take the time to research interactions between meds, and thus can cause problems between the different meds. I would get him off that Oxi as soon as possible, as that in itself can be causing some of his issues. JMHO

 

 

Vic


So what were we talking about?


#105 Trying hard

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Posted 13 August 2014 - 09:04 PM

Rannei welcome

Oxi did some weird stuff when my DH took it, I'd talk to his docs about the behavior, and see if it isn't related to the oxi.  As Old said side effects of PD medication can create problems, and so the best place to start is with his Docs.  If you can get yourself an MDS, and make sure that this doc listens to you when you bring up things that are not related to movement. 

Again welcome Rannei, and don't hesitate to ask questions, there are a lot of people here ready to offer their experiences.  And.........don't be afraid to start your own thread.

Look forward to hearing how it goes.

.


Edited by Trying hard, 13 August 2014 - 09:05 PM.


#106 Golden01

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Posted 13 August 2014 - 10:36 PM

So sorry, this is hard. Others have good advice, particularly about seeing a MDS. It really can make a difference. Have you ordered the NPF "Aware in Care" Kit? It has great lists of medicines people with PD shouldn't take.http://www.parkinson...re-in-Care.aspx

 

For my two cents worth, I think what you are describing might be due to medications. The PD meds work on the brain and can have strange effects. Before Azilect came out, my husband was another MAO inhibitor, we had people in the bedroom with us often! They didn't seem harmful to my husband and I couldn't see them so I don't think we even mentioned it his doctor at the time (he hadn't been diagnosed very long). When he changed medicines, the people went away! My husband did not do well on the dopamine agonist, in fact he got worse. Luckily his doctor recognized the problems and took  him off after about six weeks. It took about another month for him to really be "back". There are some pretty big things that happened during that time and he has little recollection of the events. 

 

Good luck too you. Good wishes are surrounding you. 



#107 Beau's Mom

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Posted 13 August 2014 - 11:40 PM

Welcome, Rannei!

 

Allow me to suggest you post your husband's diagnosis, medications and behavior in the Ask the Doctor forum. Dr. Okun is very informative and may have suggestions for you to take to your husband's neurologist or MDS. 

 

I hope you find the experience, strength and hope here as helpful as I have!

 

Dianne


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#108 tobebo

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Posted 29 August 2014 - 01:31 PM

Hello, I am a new member as of today! I've been searching for a place to share my thoughts. My DH was diagnosed with PD last

January. I don't have to tell anyone here the emotional roller coaster we have been riding since then. He is on 2 PD meds and some

other meds for things and as of yesterday, he got a great checkup with our DR. He sees a neurologist too. I'm pretty sure that

this PD was coming on for at least 2 years before we actually had any outer symptoms. He was dealing with bad stiffness before the

meds and tremors. The meds really help the stiffness and he sleeps better too. I know that none of this is new information to any of

you because you've delt with it and more.

I have been able to get him in to an excercise schedule and we both do it 3 evenings a week together at home. It's really something

he looks forward to.

 

It's been hard for him because he had to give up riding motorcycles. We both had our own and sold them 2 years ago because we

hadn't ridden them in 3 years. Which is why I say I am pretty sure we were dealing with the PD in those 3 years. He just wasn't the

same. He pretty much likes to be home with me and the dogs. We have 3 and he tells everyone that they are what gets him

through each day. I've taken over writing checks and doing alot of things that have  become more difficult for him but he still helps

me cut the grass.He has good days and bad days, which can usually mean he's on the couch and sleeping alot. But, we get

through.

 

I've just found myself feeling overwhelmed lately with the changes that are taking place. Some days are hard to deal with. Thank you

for the opportunity to vent here.



#109 Golden01

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Posted 30 August 2014 - 11:28 AM

Welcome aboard! Not a club you wanted to join but I hope you will find support and information here like I have over the past few years. I understand about the motorcycle, my husband still has his although  he hasn't ridden in over a year. We have a friend that comes and takes it out to keep the gas fresh and everything working. I think we'll sell it soon but until my husband is ready, I'll keep paying the insurance and the license. My husband does still go on the roof to fix our coolers. Not sure about that but, I guess it keeps him limber. He doesn't have balance problems, mostly tremor. Overwhelming is the right word to describe this journey.






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