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Old 07-06-2013, 10:33 PM   #46
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Re: It's getting tough--Parkinson's spouse

Thanks Sparky for the tip. I researched Lewy Body Dementia and I think you are correct. According to what Iíve found, I think my husbandís diagnosis should be LBD and not Parkinsonís. While some of his symptoms fit Parkinsonís, they actually fit LBD more. One of the symptoms of LBD is Parkinsonism, and it generally affects the gait, which is what Ronís problem is. The other major symptoms are: deficits and variations in attention and alertness, repeated falls and syncope, sleep behavior disorder, and visual hallucinations (not psychotic ones but where he thinks he is somewhere else). What scares me is the wrong diagnosis could be adding to his problem due to the medís the docís are prescribing. Iím making apptís with his primary doc, neurologist, and psychiatrist to discuss the possibility that he should have additional testing and his medís might have to be changed.
Thank you so much for bringing this to my attention!

 
Old 07-07-2013, 09:23 AM   #47
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Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by dogmusher View Post
yep know how you feel, my husband has had pd now for about 8 years and is getting worse, every thing we try new does not seem to work. He is moody and all over the place at times. not sure who i am living with . We are retired, he is 73 I am 69 we will be married 50years in june. so this is tough.
Husband has dementia and P.D. The pain for both of us has been beyond words. Yesterday he went to live in a group home. After almost 50yrs of a good marriage I am alone. Death comes and you grieve and slowly it lessens,,,,,,,this just keeps going on. Two years ago a strong weight lifting exercise guy, today a little old, bent over,confused man who forgets how to get into bed.A cruel and difficult disease Lowie Body and P.D.

 
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Old 07-08-2013, 03:11 AM   #48
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Re: It's getting tough--Parkinson's spouse

BuffaloBuffalo, My heart aches for youÖ My husband was a pilot and avionics technician before this awful disease attacked him about three years ago. Now he canít tell time, has difficulty dressing himself, and needs full time care most days. I know the pain and sadness you are feeling and know itís only a matter of time before Iím faced with not being able to care for him at home. Iím still working full time overnight when heís sleeping to maintain income and insurance, but getting overwhelmed with keeping everything going.

I canít imagine what you are going through and wish you the best and send you lots of (((HUGS))).

 
Old 07-25-2013, 01:23 AM   #49
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Re: It's getting tough--Parkinson's spouse

Quote:
Originally Posted by sparky1109 View Post
Your husband must be suffering from lewey body dementia, or possibly Alzhiemers, but whatever it is it sounds like something in addition to PD and not PD itself.
I want to thank you for your insight and suggestion. I've done a little research and it does appear that Ron's symptoms are more closely related to LBD than Parkinson's. How did you know this? Do you have a family member that was diagnosed with Parkinson's that actually was LBD? Do you have first hand knowledge of someone with LBD?

The more I find about LBD the more I feel this is this the disorder my husband has. How do I get more info on this, find out more about med's, treatments. Everything I've been looking at seems to contadict each other.

I know we aren't suppose to list emails or contact info, but if you respond to my post I will respond personally to you.

Thank you!!

 
Old 09-05-2013, 03:32 AM   #50
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Re: It's getting tough--Parkinson's spouse

Remember that non optimal medication delivery can make Parkinsons appear that it is progressing faster than it truely is. When the med dosage and/or schedule is not correct quality of life and ease of care goes out the window..and stress for all involved goes through the roof. Anger and frustration can sometimes indicate too high of a daily dose. DO NO make any sudden changes yourself but alk to your doctor. Regarding controlling blood pressure many top blood pressure specialists feel that the tried and true method of controlling high blood pressure involves using a diuretic like Hydrocholorthyazide as the cornerstone of BP therapy. The time that you take the pill can be important to help coincide with the peak BP of the day. Watch out for newer exotic blood pressure meds...they may cause problems in Parkinsons patients...

 
Old 09-05-2013, 03:36 AM   #51
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Re: It's getting tough--Parkinson's spouse

also...when patients feet "freeze" while walking try using an inexpensive laser pointer or a bright flashlight and spot the floor where their next step should be....ask them to step on the dot of spot of light. This often works amazingly well in "unfreezing" their feet....

 
Old 09-26-2013, 01:32 PM   #52
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Re: It's getting tough--Parkinson's spouse

My husband was diagnosed with Parkinson Disease over 30 years ago. I met him 13 years ago and new that he had Parkinson Disease when we met. At that time, he had some tremor and had just started having "freezing" spells, but with the sinemet, he was doing fine. He was driving, boating and was in love with life. He is 16 years my senior and shortly after we married, I was diagnosed with Multiple Sclerosis. My first exacerbation was horrible. I recovered, mostly, and went on with life. I had my health insurance from my husband's job and things were great. He retired 5 years ago and I had to go on Cobra. I stayed on Cobra benefits for 18 months and then was unable to obtain health insurance because of pre-existing conditions. My husband's health took a turn for the worse about 3 years ago in August when he became Septic with a horrible strep infection that probably started with his bladder. Since then he has a permanent Supra pubic catheter and has been unable to walk. Since then, I have gotten Hospice involved because of the strain on my health and he is completely bed bound. He depends on me for everything. In February of this year, my Multiple Sclerosis diagnosis was changed to Secondary Progressive MS and I was put on Methotrexate once a week because without health insurance, there is nothing affordable to be put on. Since then, I have become so tired and unable to do the things that he needs. He is now experiencing dementia at times and he now has MeRSA. This is contagious and with my lowered immune system, dangerous for me . . . but I keep on going. I guess what I am asking everyone is how long do I do this for . . . He sometimes doesn't know what day it is, or what we are doing today, but he has many days of complete intellect. He gets angry with me, but I understand that. I have a Hoyer lift to help me move him, but I am having trouble cooking dinner and providing the company that he requires. We raised 6 children (4 are mine and 2 are his) They all have their lives and only 3 of them live near. The ones that live near have small children and can't help me like I need. I pay a home health service provider 16 dollars an hour to give me time off on Sundays, and my son keeps him on Wednesday night to let me get some "air". It is really not enough. I get respite every 30 days for a 5 night stretch, but he hates it and when he gets home, he is angry and upset with me. I depend on the Social Security benefit that we get every month to pay the bills, so my options are a bit limited. I just don't know the first thing to do to find some other help. I guess I am just venting here, because I promised him I would take care of him until the very end . . . . but I did not count on my Multiple Sclerosis getting worse. In a few years, I could be in his shape and there is no one left to take care of me. I am just beside myself with worry. I am just venting. . . Thanks!

 
Old 10-04-2014, 04:25 PM   #53
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Re: It's getting tough--Parkinson's spouse

I feel so sorry for you and your husband. I was recently diagnosed with Parkinson's after suffering for five years only to find out that I first started having symptoms 20 years ago. The only thing that saved me was strenuous exercise. It postponed the serious symptoms until after retirement. Now that I'm getting older I am finding out I can't exercise as much as I should. The other thing that is tricky and takes time and patience is medication and seems like a never ending battle. But keep trying because it is still possible to have a good life.

 
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