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Old 09-14-2006, 10:39 PM   #1
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Dania1 HB User
Re: Younger Parkinsons wife frustrated !

I am 50 and my husband is 62. I totally empathize with you and it's so nice to know I'm not alone. This website is the best thing that has happened to me in months. My husband gets nervous, hovers, asks a lot of rhetorical questions, gets stressed easily. It takes a lot of patience.

 
Old 09-19-2006, 04:10 AM   #2
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Unhappy Re: Younger Parkinsons wife frustrated !

I understand how you feel. My husband is 56. I'm 49. He was diagnosed three years ago. Sometimes I wonder if I have a marriage at all. I can deal with his limited employment now, but not the mental and emotional symptoms. The mutuality of the relationship is going down the drain. My husband has speech problems, slowness, difficulty walking, insomnia, pain and trouble getting out of a sitting position. He's getting more depressed lately. It's tough being a well spouse. You no longer have a spouse who meets your needs or helps you with any problems.

 
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Old 09-19-2006, 02:12 PM   #3
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Re: Younger Parkinsons wife frustrated !

Hi there, I am 48, and was diognosed with PD when I was 45. I am on Requip
at the moment (23mg/day). When the meds kick in, I am a normal person again, when they wear off, I drag my leg, cannot talk properly, and go stiff. I have also experienced short term memory loss, mood swings, and unreasonable behaviour. I have moments of being insecure and paranoid - almost about anything! The most frustrating thing about Parkinson's is having it! 2 1/2 yrs ago I was a normal human being, now there are times when i feel a freak, and I know its not going to get any better. Luckily, I am very positive, still work as a Telesales Supervisor for a wholesale company, albeit have just reduced my hours as I was getting too tired. I can still play squash, but I cant dance - (my biggest frustration) I sometimes have to ask friends to help do a button up or put on a bracelet for me, I dont like asking, I would rather be able to do it myself, but I have no choice! I have changed from a very active person who was always on the go to a much less active person unless dictated by my meds. I am now considering introducing Levadopa to my meds, which hopefully will give me a better quality of life. I know how hard and frustrating it must be to be a carer, but it is also just so frustrating to have to accept major changes which are happening to your mind and body which you cannot control, especially at such a young age and with such a varient on symptoms from one Parkie to another.

My motto: Live for today, and make the most of things while you still can!
Good Luck Jill

 
Old 09-19-2006, 02:34 PM   #4
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Re: Younger Parkinsons wife frustrated !

Hi there, I am 48, and was diognosed with PD when I was 45. I am on Requip
at the moment (23mg/day). When the meds kick in, I am a normal person again, when they wear off, I drag my leg, cannot talk properly, and go stiff. I have also experienced short term memory loss, mood swings, and unreasonable behaviour. I have moments of being insecure and paranoid - almost about anything! The most frustrating thing about Parkinson's is having it! 2 1/2 yrs ago I was a normal human being, now there are times when i feel a freak, and I know its not going to get any better. Luckily, I am very positive, still work as a Telesales Supervisor for a wholesale company, albeit have just reduced my hours as I was getting too tired. I can still play squash, but I cant dance - (my biggest frustration) I sometimes have to ask friends to help do a button up or put on a bracelet for me, I dont like asking, I would rather be able to do it myself, but I have no choice! I have changed from a very active person who was always on the go to a much less active person unless dictated by my meds. I am now considering introducing Levadopa to my meds, which hopefully will give me a better quality of life. I know how hard and frustrating it must be to be a carer, but it is also just so frustrating to have to accept major changes which are happening to your mind and body which you cannot control, especially at such a young age and with such a varient on symptoms from one Parkie to another.

My motto: Live for today, and make the most of things while you still can!
Good Luck Jill

 
Old 09-22-2006, 10:36 AM   #5
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Re: Younger Parkinsons wife frustrated !

You're not alone by no means. I am 49 and was diagnosed when I was also 45. I also feel insecure and alone even though I'm married. I feel that my husband is not there for me. I am effected on my right side. I have great difficulty even signing my name and did tend to drag my right leg. But I am truly blessed since it hasn't effected my speech. A few months ago I got a surestep brace for my right ankle/foot and it enables me to walk almost normal without draging. I also joined the YMCA six months ago and walk a mile several times a week. I also use the weights. The exercise helps me with my emotional needs making me feel better about myself and physically stronger. I feel fortunate & thankful that I was able to work for one company for 30 years and retire at 48. It is frustrating to say the least to have Parkinsons and yet have so many people still depending on you to be the strong one.

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Old 10-03-2006, 12:43 PM   #6
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loboo HB User
Re: Younger Parkinsons wife frustrated !

Hi Ya - my Dad was a Parkinson's sufferer he was diagnosed at around the age of 50. He too had problems with confusion. Sometimes he used to hallucinate also - some say this is due to the medication - some say it is part and parcel of the illness. Dads hallucinations did get better, and a change of medication helped with the confusion and ramblings.

My mum had the same problem .... the Parkinson's Disease Society are great but at the support groups the majority of people were elderly - thought things might have got better as a lot of people are diagnosed young too

You are not alone, it was hard being his daughter so make sure you get lots of support as a carer for your husband.... and it is ok to be frustrated!!!

 
Old 10-03-2006, 08:19 PM   #7
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Re: Younger Parkinsons wife frustrated !

Thank you all for writing and being so honest and supportive. It helps a lot. I feel so sorry for my husband, because he never feels good anymore and he's so dizzy, sleepy, and stiff. He's in one world and I'm in another. I'm supportive and try to be positive, but it feels a little artificial sometimes. He's so different. We all know it - including him. Our son (a teenager) finally broke down last night and cried and cried (but not in front of his dad). I told him it was good to let it out and we all need a good cry sometimes. I let him know we were all feeling it.

It sure helps to have you guys out there in cyberspace.

 
Old 10-29-2006, 11:13 AM   #8
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Re: Younger Parkinsons wife frustrated !

I'm so sorry, I am 67 and have PD. I don't want my children taking care of me when I get worse. All I can say is pray and do relaxation tapes. Get out with your girlfriends and have a lot of laughs. It is okay to leave him with someone else. God gave you a life too, so you live it and you will be better able to deal with your husband. You must feel like he is gone now. That must cause a lot of grief. I am on the other side and don't want to do this to someone. I told my girls, I want to go to a nursing home when I can't take care of myself. I think those of you that have a hard time with this that it would be okay to do this and not feel guilty!!!! He would get the care he needs and when you visit you could bring him some of his favorite treats. God Bless you. Take care of yourself and your emotionally well being.
Kathy

 
Old 10-31-2006, 07:35 PM   #9
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Stephen01 HB User
Re: Younger Parkinsons wife frustrated !

Thank you all for your valuable insight as I look to the future with sadness, worry, fear, and having read your posting's, some sincere compassion for those who might care for me. I have just been diagnosed with Parkinsons and find myself not coping too well. I am a pilot so my flying career is finished at the ripe old age of 52 and with slurred speach and diffucalty writing, my future is looking a little bleak.

However, I realize that I need to 'snap out of it' and hope to learn how to do so from the correspondance of people like yourselves who have already suffered the initial shock and despair and are now moving on. I want to make the most of life and would value any advice that you might be willing to share

Thank you all and God bless

Stephen

 
Old 11-04-2006, 02:39 PM   #10
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Re: Younger Parkinsons wife frustrated !

Hi Stephen,
It sounds like you are experiencing probably what every person experiences who has just been diognosed with a major illness. I think i was in denial for a good two years after diognosis, with worries and fears emerging only when my symptoms were worse, apart from the initial diognosis when i worried about everything. It is the fear of the unknown which is the biggest worry, and because each person with PD has different/varied symptoms, no-one can predict the future. In the uk at the moment there is a huge increase in the awareness of PD, which is great and I am really hopefull that a cure is around the corner. Until then we must try to keep our chins up, and try to stay positive, although that is not always easy. Now I know i have PD and have accepted it, I am trying to make the best out of a frustrating situation. Find out as much info as you can about pd - and try joining a pd support group, and of course forums like this one can always offer support.
Good luck and take care
kind regards
Jill

 
Old 11-17-2006, 12:43 AM   #11
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Re: Younger Parkinsons wife frustrated !

My nightmares drive my wife crazy. They are caused by my medication and they are quite vivid, often loud and sometimes animated. If I have a particularly restless night, or I am extremely tired,, I simply sleep in another room that night. Sometimes I start out sleeping with the wife,, but she wakes me up when I start getting annoying. The only good thing about this enhanced dreaming, I remember most of them when I awaken and some are very interesting.

 
Old 11-17-2006, 12:48 AM   #12
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Re: Younger Parkinsons wife frustrated !

Quote:
Originally Posted by Stephen01
Thank you all for your valuable insight as I look to the future with sadness, worry, fear, and having read your posting's, some sincere compassion for those who might care for me. I have just been diagnosed with Parkinsons and find myself not coping too well. I am a pilot so my flying career is finished at the ripe old age of 52 and with slurred speach and diffucalty writing, my future is looking a little bleak.

However, I realize that I need to 'snap out of it' and hope to learn how to do so from the correspondance of people like yourselves who have already suffered the initial shock and despair and are now moving on. I want to make the most of life and would value any advice that you might be willing to share

Thank you all and God bless

Stephen
Stephen, I was 49 when I was diagnosed. I am very fortunate though, the medication has worked fairly well for most of the course of the disease. In fact, many people don't know I have PD unless I tell them. It's been 10 years now, and the medication doesn't work as long as it used to. I work on an offshore oil rig in Nigeria and all my fellow workers are aware of my condition. I am going to keep working until my body won't let me and my neurologist says that can be several more years. Hang in there buddy!

 
Old 12-07-2006, 09:37 PM   #13
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blessedw/yungpd HB User
Re: Younger Parkinsons wife frustrated !

I am 41 and my hubby is 49.. I am very severe. My husband read this and his reply "is were you ever one with your spouse"if i suffer he suffers he says.... Sorry but that attitude is selffish he says he don't look for me to meet his needs nor do i him.. We complete eachother he sees that the beast in me is not me.. It takes truly loving the person in a special way to be there for them and look past the sickness..I am lucky.. he truly loves me. I don't believe your selfish ,, I believe that you are not truly in love with him..Ever see the show "the notebook" we both cried. He said and means it if I were in home he wouldnt leave. If I came back to him only 5 min a day that wuld be enough.. Our life and home is together,

 
Old 01-02-2007, 10:08 PM   #14
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Re: Younger Parkinsons wife frustrated !

I have walked in your shoes and know exactly what you are saying and how you feel. All I can tell you is to hang in there and make sure you make time for just YOU. I got so stressed my hair started falling out and I had to see a therapist who convinced me I needed some time each week to do something for ME. Otherwise all my time was taken up with doctor appointments, therapy appointments, etc, etc. I was becoming a basket case.

 
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