I am 30 and my Mum is 55. She was diagnosed with Parkinsons about 4 years ago. At the time I was living quite a way from my parents and I guess I didn't ever really deal with it, I don't remember ever crying or doing any research, or any of the things that you would expect, I just pushed it to the back of my mind and carried on as normal. Even when I came to visit and began to notice the signs of it in my Mum I just ignored it and carried on as normal.

Then about 6 months ago I was moved with work and now live about 20 miles away from my parents, of course after 10 years away they are really pleased to have me nearby and are always asking me to go over for Sunday dinner etc, all the usual things, and suddenly every time I go over I am confronted with how much she has deteriorated. The stupid thing is it has been over 6 months, but seems to have only hit me properly this weekend.

The thing is I don't even think it is that bad yet, it is affecting her left side, so she drags her foot when she walks and of course her hand shakes, and she looks so frail and somehow so old too, but she is still working full time and living a pretty normal life, but I am finding myself avoiding going over, and only staying for an hour when I do, and making excuse after excuse not to spend time with her, I love her so much but just can't seem to deal with seeing her.

I guess I should maybe talk to my Dad, I really don't want to upset him or my Mum, I just want to make things better so we can spend some time together, I am so aware that I wont be living so close for long (I am in the military so will probably be moved in a year or 2) and of course I am also aware that every day I leave it could be another day where she is able to talk to me and do things with me wasted.

I was hoping by posting this message that I could maybe get in touch with someone who understands what I am going through, who can maybe answer some of my questions. I have been such a crap daughter and I want it to stop today. I want to be there for my Mum.

Hi ,
Is your mother on any meds for the PD symptoms?
She may just need them tuned up or adjusted for better control esp if she is still able to work.
Has she had an whole health work up recently?

Your reaction is all too normal. But you gotta get over it. Life is a ***** (censor this) but the only thing that makes it better is each other. It won't be easy.

What you can do, though, is to learn as much as you can and use that knowledge to help your Mum. At 55, she is a young woman. She may or may not have studied up on PD. If she is just going with what her doc tells her she is probably making a mistake because there is so much that the docs don't know. Probably the best or at least the most experienced is a guy named Abe Lieberman. He has been in practice for forty years or so and has treated about 65,000 patients. He has several books out. Get them all.

For your Mum, the single best thing you can do for her is toget her addicted to vigorous exercise. Instead of sitting there thinking of some way to escape, get her to join you in walking, swimming, a stationary bike routine, etc Anything that gets her to pumping. That will do several things but one is that it is the single most effective thing against PD and two is that if you get transferred she will be able to carry on.

There is lots more, but that's a great start. Good luck.

Hello Lynn, I know only too well how very hard it is for you at this moment. You don't think you can handle the scene that may happen if you talk frankly to your parents about your mother's illness. You will cry, and they may cry, and you will be embarrassed. It will be emotionally upsetting to all three of you.
It is so much easier to avoid the subject, to avoid seeing the illness, to pretend that it's not so bad.
I was 20 when I was in the same situation, and I will never forgive myself for my cowardice. It weighs on me heavily. My mother had cancer, but it makes the same difference - I did what you are doing, and lost my chance to help.
Be brave, wade in with both feet and tell your mother how much you love her, and ask her questions about her illness. Listen and emphasize and ask how you best can help. And cry together.
I have Parkinson's and I talk to my adult children about it. At times they retreat into denial and don't like to hear about it, but most often they listen and ask questions, and it is a great help to me when I see that they care.

Hi Lynn,
First of all -- stop beating yourself up. Everyone handles trauma differently and by reaching out the way you have it’s obvious that you care very much and are feeling the anguish that comes with situations out of our control. Just because your Mother’s body is betraying her she’s still the person you know and love. You might try going to a Parkinson’s Disease support group with a friend – there are pros and cons to this as many people are elderly and further into their PD journey and that might throw you, but I found their strength of spirit and the “this is not going to beat me attitude” encouraging. Also, you meet many spouses, friends and siblings of people with PD. At meetings you’ll find literature, pamphlets and less daunting material. Another time you may go to one of these meetings with your parents.
My guess is that you are frightened and if that is the case push yourself to talk to your Mother and tell her so. When it’s time to cry, you’ll cry. You’ll never regret having made this effort and I suspect you will feel much lighter.

On the purely practical side of things, I agree with the others – some adjustment of medication may help her greatly. In the beginning I had that left sided drag to such a degree that I was wearing out my socks, or I should say one sock through the heal. The doc put me on Requip, an agonist, which stimulates, for lack of a better description, the Dopamine producing cells that are responsible for smooth muscle control. When she communicates these symptoms to her neurologist and adjustments are made you’ll likely see improvement. She may even put some healthy weight back on. Tremor and drag have a way of weighing you down and wearing you out...

Also, and I mean this in the kindest way, don’t fool yourself. Your parents know that you are upset. I really encourage you to talk. If it’s not something you are used to doing take some of these responses you are getting and read them or share them at the next Sunday dinner. You only ever get one Mum. I wish you the best and greater peace of mind.
Regards, Guy

Hi Lynn,

My heart goes out to you. My mom was diagnosed in her 50's too beginning with a gait disorder. The good news is that PD that presents fairly early as a gait disorder tends to have a slower rate of decline. In fact my mom did well until about 70, when she participated in a clinical trial and suffered a brain injury and hasn't been the same since.

The thing that gets you through is to focus on the part that is still your mom and not her PD. Over time this becomes more challenging as she'll begin to have bad days, then bad times over the course of the day and still you focus on what is her, and cherish her good times.

My grandfather passed away in his 70s after 2 decades (I think) of PD. I was an older teen at the time, and I remember that he still knew who I was and he still knew who he was at the time he died. He was still in there. Old age robs you of so many things. You sometimes have to look hard for joy. But he did, and he found joy in his life until the end, when he died of natural causes.

I wish you peace.

Lynn


Sometimes when we can't speak words to show how we feel its an idea to write it down
Send your Mum aletter tell her how much you love her, and tell her how frightened you are. It will draw you closer.
My father died of Cancer 11 years ago, i was terrified to go see him so i wrote a letter. He came to visit me [120 miles away] two days later.
it was the best thing i ever did.

take care of you.

Thanks for all your advice, suddenly I don't feel quite so alone. I know my Mum has recently had her medication adjusted, but unfortunantly there has been little improvement, however god knows how bad she would be with none at all so I am just grateful that she is on something and that the side effects are not too bad.

I guess I glossed over how frail she seems at the moment. There is certainly no way she could participate in any kind of vigourous exercise I'm afraid, before the symptoms progressed she walked to work every day (about 2 miles) and would turn down any offer of a lift, people used to joke about seeing her power walking down the street listening to her i-pod! But recently she hasn't been able to manage the walk and she is now given a lift by a friend who works with her, she was referred to a physiotherapist twice, but both times was sent to see the same person who had no knowledge of Parkinsons or the problems related to it, so both times she gave it up.

I am going to try and have a chat with my Dad and explain how I feel, I know it's the cowards way out but maybe after talking to him I will be brave enough to talk to Mum. I just don't want to hurt her or upset her, she is so important to me and it breaks my heart to see her struggling away to try and maintain a 'normal' life.

Hi Lynn,
You don't say where you are in England, but I am in Kent in the village of Selling. One thing you may consider is your Mum joining the UK Parkinson's Disease Society. I steered away from it when first diagnosed, but you meet like minded people who have the same problems and it is amazing how normal it will make your mother feel, when surrounded by other PDers.
We are just back tonight from France, where we visited a group of French Pders in Reims, the champagne district. We had two 4 course meals and a 3 course every day for 4 days, and drank copious quantities of chasmpagne. The French group organised a tremendous programme for us.
I am on the Committee of the Canterbury branch, and could find who to contact if your mother felt it would be of interest. If you wanted to discuss it by phone, my number is 01227 750787. It is a tremendoes help to be able to compare notes and exchange hints, and I am sure we could help.
Best wishes
Ron

She is a member of a local group I believe and has been to a few meetings with my Dad. Not sure how they got on though as I have felt so funny about asking, but will make a point of asking the next time I see her.

Thanks