How do you go about getting the family members to take you more seriously when you ask for help?

[minicoopmom]

I'm not sure this is a question, but I have trouble with my husband and kids, not taking me seriously enough when I say I need help. My meds have been controlling the tremors quite well, so I guess they don't "see" any difficulty I'm having. That has actually added to my stress level, which seems to be making my symptoms more pronounced...what a circle.

[Hidden]

You can educate them. They could follow this blog, reading what others with PD are going through and recommended websites.

They could also talk with your doctor.

I had very little understanding of PD before following this blog. Praying for your family to gain understanding and compassion.

[minicoopmom in reply to Hidden]

Thank you for answering. Was really a relief just to get it out too.

[Hidden]

If you have A PD nurse iam sure she will itdown with your family and explaine to them all about PD, My nurse jackie was fantastic and spent aroud 3 hrs with me and my family to tell them the ins and outs of living with some one who had PD

hope this is of some help

Al

[minicoopmom in reply to Hidden]

A very good idea. My husband goes with me to my doctors appts. but the girls really have no idea what's going on.

[Kat00]

Dear Minicoopmom,

I don't know how old your kids are, but it is more than likely they and your husband are a bit in denial, and as the others have stated don't understand your Parkinsons diagnosis and what it means for you.

As an adult daughter of an amazing Father with Parkinsons, I have seen the denial phase in my mother and sisters ~ although now they are fully aware and accepting.

I am sure you are a wonderful mother and wife and you are the one who has made things run smoothly at home~ it is very hard for your family to accept any change to that dynamic..With the tremor control of your meds, your outward symptoms don't indicate just what you are going through.

It is a great idea to educate your family about Parkinsons, but I would also suggest that rather than asking "for more help" you have a heart to heart talk with your family.

Parkinsons is a very isolating disease. You must be frightened and unsure of all the strange things that are happening to your mind and body. Open up to your family-share your challenges and your fears. You don't have to be "Wonder Woman" and pretend that everything is ok. You will NOT lose the respect of your children, in fact it may bring the family closer together.

When all is said and done, it is not the shopping, cooking, house cleaning etc you do for your family that makes you a good Mom. It is the connection that you have- the bond of letting them know who you really are and how you feel-how much you love and care for them and yes, even NEED them that counts.

Sorry to be so long winded, I hope my perspective is helpful

[minicoopmom in reply to Kat00]

You bring up really good points. Thank you. Pretty much all you said is true and I really hadn't put it all together myself. I am still in a touch of denial myself I realize, so thanks for your "help". Very much appreciated.

[cabbagecottage]

Parkinsons is such a complex illness/ condition whatever we like tocall it . It is difficult enough for the sufferer to recognise and tell you how they are feeling , . At least that is what I have found with my husband . He had been living with it uncomplainingly for many many years without it having a name .While I plodded on beside him ..

Until the GP/ and consultant said . " YOU HAVE PARKINSONS " It was someth ing ,someone else might have and we knew / absolutely nothing about it , What a learning curve it has been , we are learning something knew about it everyday .. The many many symptons that noone else can see or feel other than MAYBE a small tremor .

Of course if it happens to someone younger who also has a young family , they are busy getting on making a life for themselves they just haven't got time .

I really don't know what the answer is because each family is different .

Maybe they should start having COPING lessons in school ....................

..

.

[minicoopmom in reply to cabbagecottage]

Very, very true. They don't see any of my "bad" days as they are at work, school, etc. Busy with their own lives. I definitely need to be more vocal about the changes going on. Thank you.

Thank you all. It has been good to get this off my chest and some answers and suggestions. It is VERY much appreciated.

[Hidden]

Minicoopmom this is very good advice!

[Parkinson_Schmarkinson]

I watched the DAve Iverson PBS movie "My father, my brother, and me" together with my wife and mother-in-law (who lives with us). Kathlene, I thnnk it was, listed some other vids here a few weeks ago.

Videos can do a lot of the heavy lifting for us in these situations. They take the onus off us and are somehow more credible. IT's not me whining, it;s the TV!!

[Hidden]

I watched , last night Love and outher drugs

great film

Al

[srarndt in reply to Hidden]

Agreed!

[jillfd in reply to Hidden]

I burst into tears at the scene where we see her "off" for the first time. It was so perfectly portrayed.

Hated the Hollywood ending. In real life the guy leaves the girl.

[Court]

I agree with all the answers you have received but especially with Kat00. I completely understand your frustration as my family react in the same way. Because, at the moment, I carry on as usual, as much as possible they do not understand how I feel, and probably don't want to.

When I am having a bad day I still look the same, although I feel different - if this makes sense - and struggle to cope with everyday chores. I think this is because of fear. If you don't accept it, it will go away. They won't accept that Parkinsons is a progressive disease and nothing in life stays the same. They, especially, my husband, do not give me any sympathy, his way of coping and say that Parkinsons is almost my sole topic of conversation.

This is probably true, but I have always found it helps to talk about things. I know that they are there for me if I need them and this is what really matters. If you find a way to get your family to appreciate your condition, I would love to know.

[Hikoi]

Amazing answers. What helped for me was i found it useful to take my husband and daughter to Parkinson seminars. It helped on many levels, hearing from 'experts' carried more weight than some of my explanations, we had shared ground / understanding, meeting others with Parkinsons helped them see how it affects people.

[PatV]

I've taken my daughters and sons in law and one grand daughter to PD seminars and workshops. And the daughters accompany me to Dr. We still argue about laxatives and such but they are mostly understanding, some times more than others. When I'm injured they think I should be assisted living. Too much work to move!

[PatV in reply to PatV]

IN assisted living. sorry.

[mccshe]

To Court...and minicoopmom....I understand how you are feeling. I think that my family too ,often forget that I have PD since my symptoms are controlled. I suspect they get tired of me talking about it too!

I am plagued by stress and fear I am sorry to say. Sometimes I am unsure if my mind is being affected more and more. I do turn to my husband and ask him to sit with me and help me sort things out, Stress certainly makes things worse...I try to deal with it all but sometimes I am confused, you know , trying to figure out what changes are due to normal aging and what may be the Parkinson's. It's a difficult disease to manage.

On a positive note I try to keep a positive outlook daily. I am still working outside the home and take on new challenges frequently. Learning new things and playing word games and such to keep my mind active are extremely helpful.

Good luck to you!

[srarndt]

Excellent comments all! I especially like Pat V's comment about taking your loved ones to support group meetings, seminars, etc.

Best wishes,

Steve (Bisbee, AZ)

[minicoopmom in reply to srarndt]

Thank you all for your great advice. No seminars near where I live, but I'm thinking of starting something myself. I can't be the only one with PD around here.

[TheLordsWeapon]

Hi mini

57 and diagnosed 3 years ago, and i hear yaa, friends and family often say wow you look really good, almost sounds like their saying "there's nothing wrong with you" but I know its just me and my sky high anxiety that makes me think that way.... People just do not know the inner feelings that we have, and I do not expect them to.

Shaky weak legs on and off all day, ants under the skin crawling sensations my favorite, many anxiety (GAD) symptoms that can not be seen on the outside, except for maybe the heavy sweats sometimes, or severely flushed, red as a beet face. involuntary movements, which only happens when I'm trying to be still for asleep or sitting at my computer relaxed, People DO NOT see all of these annoying symptoms/side effects....

and i admit it does annoy me at times

God Bless GODSPEED!

Mark

[beehive23]

im sorry but in my experience this is the first stage of alienation through denial and PD bias. I have seen this alot. hang tough , good vibes your way, learn to be alone if necessary. cheers