I think your mother would feel more loved and cared for if you asked and talked about her PD and how she is doing with it? She might be trying to protect you, and you are trying to protect her- I think you all will feel better if you talk about it. Maybe they are waiting for you to open the communication lines?
My parents have and had health issues and I feel much closer for asking and talking about these things.

Hi...I haven`t posted here for a while but this is a great place to find support.There are forums based in the UK also if you want to check them out as someone suggested.
I really feel for you.It must be devastating to watch someone who at one time provided strength and sureity,almost reverse roles and become the needier.Yet you know,we folk with PD don`t tend to feel sorry for ourselves too often and we focus on getting on with life.I imagine the physical characteristics of Parkinsons are very frightening and somewhat overwhelming to witness however,and this too might be causing you anguish.
You are very brave to air your feelings and that shows your depth of care and love for your mum alone.You just need a little more help in dealing with a very confusing and bewildering disease.

Your mums physical situation might be improved with medication adjustments as already mentioned by someone earlier.She shouldn`t be afraid to ask her neurologist about other drugs.I have recently been prescribed another two drugs to add to my regime and the difference they have made has been vast,therefore your mum has a chance of improving her mobility.
However,fatigue is a major part of PD so in a way,don`t feel as if you should be spending hours upon hours in her company,always doing things because she may not be able to sustain lengthy visits or events.

But sharing time would be lovely.Spending time just over a coffee,talking about likes and dislikes,exchanging wild and humorous stories.
How about treating yourselves to a mother and daughter spa day where you can both be pampered and the pressure will not totally rest on you.

I spent hours with my mum on the day she died.It was hard,and traumatic.But I am so glad I did.

Wishing you all the best.
Steff

I read your post,and although dad does not have parkinson's about 6 years ago he had a stroke. I have felt and feel the same things you have described. I find myself avoiding him,and getting angry with him at times because he's changed so much.

Unlike what people know about stroke,sometimes stroke victims deteriorate after the stroke. Dad has gotten much worse and talking to him sometimes is like talking to a child.

I find more than anything that I miss the humourous & intelligent man that he once was,and get angry that I have to deal with the person he now is.

Whatever you do to cope is not wrong. Nobody can force you to do things any differently and it's your perogative to do things the way you want to do them.

Although I still get frustrated with him,and find no comfort and little joy with our present day conversations,I have decided to not avoid him best as I can. If he "passes",I know I will have guilt and remorse for not being kinder to him, and I don't want to live with that.


So I guess you can say...He is my test.

Best of luck to you-

It is difficult to come to terms with the knowledge that ones parents are not perfect and going to live for ever Usually that knowledge slowly dawns on us P.D makes us come to that realisation sooner even though it does not significantly alter life expectation.To a certain extent, as a result of living away and your mother's P.D, you have had to face that knowledge suddenly and it has hit you between the eyes and naturally you do not want to face it.That is not selfish just a natural response.Your role has changed as regards your mother:you are no longer the child and your mother the all knowing,protecting adult but she is essentially the same person and you need to get to know her adult to adult.As I lost my mother before I reached my teens my greatest sadness is that I never really knew my mother except through the eyes of a child.You have that chance:PD has not changed the person she is but you can no longer have the invincible woman that you saw as a child but she is the same women.
I have not said you need to grow up what I have said is that you need to come to terms with the fact your relationship with your mother has changed and accept and enjoy it.
You probably do not like what I have said and think I have got it all wrong(I might have done so) but it has been said in order to help and I have thought a long time before posting.

PD varies greatly from person to person in its severity and the symptoms it presents. However 4 years post diagnosis, to be in the state your mother is in is unacceptable (IMHO). Is she seeing a Neuro who specialises in PD, is she seeing the Neuro regularly. If this latest tuning of meds hasn't worked, insist she sees her Neuro again, and there is nothing to stop you going with her to the appointment. Be blunt, (your Neuro will be), ask the Neuro why she is so frail and what he is going to do about it. If he doesn't inspire confidence, insist he refers her to another specialist.

At 55, having been dx'ed at 51 there would appear to be no need for her to suffer the decline you describe if the PD is properly managed.

Don't feel guilt at not having been local to her, you have your life to lead and you are doing a valuable job in our military. The last thing your Mother would want is to stop you getting on with your own future.

PD symptoms can affect onlookers in different ways, you are going to have to live with that. Again don't feel guilty at your reaction, your mother probably hates the symptoms more than you, but in the end, you will have to accept her as she is.

Ron Hutton always speaks sense, but a word of warning about support groups. I am 10 years younger than your mother and have avoided these groups. They can be populated by a number of people she has little in common with, in either health, or age terms. Some people get a great deal of comfort from these groups, Ron's sounds great, they are just not for everyone.

You can help your Mum, get her sorted at the right Neuro, get her meds sorted, get her back exercising and give yourself time to adjust to the new circumstances.

Good luck,
Neil.

A word about support groups.

When I was first diagnosed I told my neuro of my intention to join a support group and to volunteer for clinical trials. He warned me not to be upset by what I will see at the support groups; some will be quite far along in their disease progression while others will show minimal signs of the disease. Never the less I found attendance at support group meetigs to be extremely helpful in dealing with this disease.

All the best,

Lloyd

Lynn,

I know how you feel. I felt the same way about my dad who had heart problems. During surgery he had a stroke and never fully regained consciousness. There were so many things that I did not get to say to him. Stay as current as you can with your mom. Make time for her. A long, tender hug will go a long way toward preparing a path for future conversations between the two of you. After my dad passed away I wrote a poem and sang a little Irish tune in the background. I play it once in a while to recall his presence in my life.

http://www.ourtoxicearth.com/isawmydaddy.html

You won't regret the time that you spend with her, but you will regret the avoidance of her. I know that I have regrets, and it has been 18 years since my dad died.

michael b.

Welcome Lynn!..You have come to the right place, and there are quite a few Brits in our community which Im sure is comforting to you..This is a good place to get educated about pd..Education for me lessened the fear of having pd once I had an understanding what I was dealing with..I would say if your mother still is working full time and functioning well, then she is still doing ok..One of my first symptoms was foot dragging, but with a good med regimen, I walk reasonably well now..We are all different in our symptoms and progression rates..Dealing with this disease is a process, and denial is the first step towards acceptance, so dont beat yourself up..I should get easier to deal with in time, as you learn about the disease..I would recommend getting involved in support, and of course, we are always here if you have any concerns, questions, or just need to vent

Hi Lynn-
wlecome to this forum, you've gotten some great advice here. Of course, talk with your parenst...I too went to my dad before talking to my mother about something serious, and it just geared me in the right direction. Educate yourself, too, so you know what questions to ask. Your mom will appreciate your willingness to understand this disease. Once you get over your own shock about her deterioration, remember this is still your mum...same mum you grew up with.
It would probably help you to maybe get with a caregiver's group n your area, perhaps find out how they all dealt with things initially; you don't have to go through this alone.
Good luck and God bless-
Steph

I just want to say thanks to all you guys for taking the time to offer me some advice. I have been making an effort to change things between me and my Mum, and I think it is working.

One of the things that I used to really hate about myself was the cruel thoughts that sometimes went through my head, I can remember feeling mad once when my mums hand was shaking, I just kept thinking why doesnt she try harder to stop it (please don't hate me!), but today I went over for my lunch and she was sat next to me, and for the first time I didn't feel uncomfortable with it. I guess what I am trying to say is that perhaps I am growing up a bit, it is unreasonable of me to expect her to stay the same forever, and I am proud of how she is managing.

I am going to speak to her about her medication and her specialist, she only sees him every six months is that normal? I'm not sure she would want me to go with her, thats kind of my Dads job, but I want to make sure that they are pushing for the right kind of care for her.

Anyway I just wanted to say thanks again, I have posted a similar thread on a couple of British websites too, but maybe because most of the people on this one are so far away, I feel a bit more comfortable.

Lynn