Wives of young onset

emptynest

Let me get this straight. You are panicking and your husband is taking no medication?? Why not? Please explain.

Panic is not a medical plan.

Dan

I hope my wife doesnt feel like shes going to bed with her grandfather everynight.  Dont mean to be rude but those words are fairly offensive to those of us who are young and dealing with this.

 

empty nest,

you seem to be feeling very lost and alone. You have been committed to your spouse for a long time - not the life you expected to have together. Your spouse is very fortunate to have you at his side. Thanks for that!

 

Your husband is undoubtedly a good man trapped in his body - not where he thought he would be either. Perhaps your family/grandkids would be more comfortable with his physical challenges if they understood his disease. I don't know the ages of your grandkids, but there are some good children's books on PD. Let me know if you want more info on the books.

 

I have to live for and believe that there is hope - hope for a cure - hope for less symptoms - hope for less side effects - hope for a better quality of life.

 

Does your husband have good doc - a neurologist? a movement disorder specialist (MDS)? Are you comfortable with his medical treatment? Have you  evaluated various treatments - exercise, diet, various meds, deep brain stimulation (DBS), etc?

 

empty nest, I wish you the best. Thanks for being there for those of us who can't.

 

lizzy4451

hi all

A great Dr. Said you have to morn the life you had so you can get on with the life you have now.That is easyer said than done.My husband has pd for about 15 years now,everyday is something new.Demita is setting in and i see the man i have been with for 36 years leaving me a little at a time.

Hello everybody!
Lizzy, reading your posts won't be a waste of time for me, ever.
I always get something good out of your comments, besides your so positive and the way you handle this disease is always inspiring to me.

This may have not served empty, but helped me in such a way today that I was feeling kind of sad and hopeless. I don't want to let hope die.

Keep up the good work!

Eternal

 

Thanks Lizzy, I know for sure we can make a difference.

By the way, there is something important to me I'd appreciate your help with.  Yekkimo, this is for you too.

As you know, this illness has many issues we have to deal with, one of them is the social implications of this disease.

Since I have a herniated disc, this has been an excellent cover up for me to hide my problem from other people, only a few of my close friends know the truth.  But symptoms are giving me away, and I feel soooo much embarrassed to talk about the reality going on.

For you to understand, I live in a developing country, in which even though this is a known and treated illness it is not very common, and is related only with the elderly. There are no support groups, no statistics, no associations, NO NOTHING.

In my  personal aspect, even though I'm not pretty, I've always been in good shape and my friends say they envy me ( in a nice way) for the way I look. Many people agree that I  seem to be in my last forties instead of mid fifties.

It has caused  a tremendous impact, to all of a sudden be a 53-year-old woman looking  as a 70-year-old one. I'm ashamed to go out.  I don't want other to feel pitty for me, I simply can't stand that.

On the other hand, my husband has been even more supportive than I expected him to be, but I don' want to embarrasse him, when he invites me to go out my immediate  answer  is no. I'm isolating,  I fear this could be the end of my marriage. I'm avoiding people so they don't start questioning me.

Lizzy, I know that you as a woman can understand me.

My therapist is not helping much with this, he is focused in counter pain due to rigidity.

I'm wondering, all this effort is leading me where?  I feel like giving up.

That is why I told you before I don't want to let hope die, but.......

No matter how hard I try to be upright, I end up stooped, hunching over and dragging my leg. When doctors said I was going to be OK with meds, I thought that included the vissible signs of the illness.

What worries me the most is that I'm turning into an angry, bitter person, and believe me, I hate this feeling.  But I'm human, and I'm weak, I don't know what to do, but I can't help it.

Yes, I'm reading about gratitude, mindfulness and all that, but it is easier said than done.

Sorry for this being to long, sorry if I overwhelmed you.

Eternal

 

 

Thanks Lizzy.  Take your time. I know I'll get a wise response.

No, I'm not taking any anti-depressant, honestly I don't want any more

drugs in my system.

Big hug,

Eternal

 

Good Morning Lizzy. You are certainly right, I'm so blessed to
have you an all this support staff. It's just that sometimes despair wins the battle, and I have terrible crisis from time to time.

I'm being followed up by a neurologist in my country, but fortunately I can afford (don't know for how long) to travel every 2-3 months to New York where I see a MDS, who leads my treatment, as I explained there are no MDS here.

Currently I take Requip XL 3 pills together once a day, it was not working so my doctor here added Amantadine with the approval of NY doctor. Problem here is that this combination worked pretty well the first 3 weeks, but now I feel very much like the beginning. There is no consistency in the good effect of medication or PD progresses from one day to another???

You are right again when you say that is good to go out and socialize, but I can't manage yet people starring at me, and acquaintances stopping me to ask what has happened to me. You know, I've been thinking that one critical situation here is that maybe I still don't accept this illness. I live in the past longing for who I was a year ago. And maybe this is the reason to this unexplainable anger and resentment.

I'd appreciate your recommendation of the other PD sites you know.
Thanks is not enough!
I'll keep you posted.
Eternal

 

Hi Lizzy.  I take Requip XL 2mg X 3= 6mg once a day.

Thanks for your feedback.

Eternal

Eternal,It might be time for you to try sinemet.It can be taken with requip or mirapex.I take stalevo a combo drug which contains sinemet,and entacapone.I find that this drug acts longer then sinemet alone.Along with mirapex I can lead a fairly normal active life.I'm not pushing any drugs only relating what has worked for me.Wish you the best.lizzy keep on posting.Your info,and great attitude is invaluable to all.Ed

ps there is a generic form of stalevo now availabe at a reasonable cost

Eternal,You fear levodopa,and its irreversable effects.What about the irreversable effects of pd.During my 15 odd years with pd I"ve had quite a few different neuros poke at me,and have heard thier different philosophies.They boil down to :1.Start levodopa as soon as you dx pd the longer you wait the less benefit you get from it.2.Hold off on taking levo as long as possible to stop it from becoming ineffective,and producing terrible side effects.I'm sure this debate will carry on for many more years.I suggest you find a support group in your area,and talk to the members there.Get it from the horses mouth,and if you have not done so allready get a second opinion from a neuro preferrably a movement disorder specialist.Depression is a very real possibility with pd,and should be treated .Talk to your neuro or your neuro's nurse asap.staying inside will only increase your stress,and the pd symptoms.Again I wish you the best.Stay in touch.Ed

Eternal,

A few posts ago I mentioned that there was a site you might be interested in. That site is a chat room of people with Parkinson's. It's a great group of people who mostly are regulars. There is a moderator present most of the most popular times.. (As you probably know, a moderator keeps things under control like language, advertising, inappropriate behavior/attacks, etc.). Sometimes it is busy and sometimes there is no one there.

 

I used to go there regularly, but seldom do anymore. I was quite the 'chatter' for awhile. Now have toned it down immensely to appease my husband. He doesn't 'get' the sense of support I receive and, hopefully, satisfaction with having the opportunity to help others with PD. He doesn't understand my need to talk/relate to people who are experiencing the same thing. I'm seldom on this site, but still recommend it based on the moderators I know who are still involved with the site.

 

The site is www.parkinsonmeetingroom.com   (let me know if that doesn't work). It is a chat room with real-time interaction. You will have to join and create a username. I use a login/username that is not my real name - my distrust of the internet. I have never had a bad experience on a PD site, but ... could happen. Let me know if you have any trouble. The room is open to anyone with Parkinson's, caregivers, friends, etc. If you want any assistance or to go there at the same time ... let me know.

 

lizzy4451