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Topic Found out today...it's Parkinson's. Go to previous topic Go to next topic Go to higher level

By Babz On 2013.08.19 18:33
I'm new here, I'm new to all of this... My dad just got back from the neurologist today, and he has been diagnosed with Parkinson's. I am swirling with emotion, I am just looking for some guidance. I plan to do all I can to help him, I will be moving next year to take care of him. I'm not sure what to expect, is next year too long? I'm 27 and I feel like I'm drowning.
Any advice or anything would be helpful at this point. thank you.

By Pearly4 On 2013.08.19 20:32
Don't panic - take a deep breath!

Parkinson's progresses at different rates and in a different manner for everyone. You could be in for a long haul with this disease, so my advice is to take this time to educate yourself. Read the posts here, read other Parkinson's web sites or check the local library for books. Do some long distance research on possible support groups in his area by web search (or other means) for caregivers and/or those with Parkinsons.

Don't lose yourself in the disease or his care, remember you'll need time for yourself and your own interests too. Take care of yourself first!

By jcoff012 On 2013.08.19 21:59
I agree...please don't panic. I suspect you will have time to make many longterm decisions, so don't change your life immediately. Check your options, especially...do you have brothers and sisters who can also help your Dad? Does HE have brothers and sisters? etc.

My husband has PD, was dx over four years ago and other than tremors and mood swings, he is doing well. He has many symptoms, but manages daily, is pretty clear headed, and never gives in to the disease. We still are able to travel some and enjoy our grandchildren.

That said, his mother had PD for over 22 years and passed when she was 79. She didn't have tremors, but had great difficulty simply moving and walking. She was sweet and kind to the very end. PD is different, even in the same family.

So, you see, one has no idea what to expect. Take your time and read a lot, ask a lot of questions, and please know that everyone here understands your fear of the unknown. No one wants this disease and no one can tell you how the disease will effect your Dad and you. We just all know that the panic and uncertainty you are feeling is universal and we all understand how you are feeling today. It is all new to you, but give yourself time to let it all sink in and then become informed about PD. Hugs and love to you. You are NOT alone. Jane

By Babz On 2013.08.20 15:20
Thank you for your kind words. They help more than I can express.

I just want to help him as much as possible, I feel so much guilt for not being there. He only really has me, I have a brother, but he won't be of much help. It has been me and my dad against the world since my world began. He was a single father and has always taken care of me, I just wish I could do more to help him.

I know I have to be strong for him, he couldn't handle knowing how upset I am.

Anyways, thank you so much, it's hearing stories like yours that help the most. I really appreciate your kindness. Hugs and love to you too. :)

By LOHENGR1N On 2013.08.20 16:38
Babz, Listen to the wise advice You've been given. Don't panic and yes take a deep breath. Read and learn all you can about Parkinson's Disease and I'm glad you found the forum! This is a great place to learn about caregiving and P.D..

If I can put my two cents in I'll counsel you to not get caught up in rushing to do everything for Your Dad. Many get caught up in doing almost everything for their patients and it leads to burnout and resentment on the caregivers part. With the best intentions people will do the writing lists, cards, pour the coffee, tie the ties and shoes carry snacks into the TV room etc because they want to help or they can do it faster. Failing to realize that in many cases this can be a 20 plus year disease. In time you may have to take some of this over but until then sometimes the best help is not to hinder. It's human nature to want to be of aid and sometimes it's human nature to like to be spoiled. We'll let you spoil Us but We'll also resent you being under our elbow every time we try to do something ourselves. I'm a single Dad (divorced) myself, diagnosed in 1986 My Children are grown with Children of their own now. One in state MA. the other two are out of state one in CA. the other in NYC. I know it's hard and you wish to rush to help but when you do remember He has to do things himself, he has to learn to adapt and do things a bit differently at times esp when the disease advances. He sounds like a very resilient Guy and resourceful. Now just as when you were young and learning to get around in the world stumbled or fell off your bike your Dad fought the urge to run and pick you up because He knew you had to learn to get up on your own. You will have to fight the urge to run and do everything for Him because you both know He has to do things on His own and maybe figure out how to do things on his own.

Remember We're here to help all we can on the forum, any day and any time of the day someone pops in to see what's posted and to help if they can. You're going to do fine and make your Father prouder than he already is of the young Lady who is His Daughter! Take care, best of luck and hang in there.

By olpilot On 2013.08.21 02:03
I got my diagnosis a couple of years ago, a year ago.I took up woodworking as a hobby, selling at farmers markets and craft fairs. In the year since I have been getting busier and busier. I work slower and have to be very careful but I am very able to care for.myself. if I could remember to take my pills on time I'd be pretty much set. I do laundry and cook. I guess what I'm sayings too is relax, breath, and see what your dad.needs. Getting to much care right now drives me crazy. I'm not as strong as I once was, wont drive as I once did, but I don't want someone to give.up their life to take care of me.yet. my guess is if you're 27, dads not that old either. Time for you BOTH TO STOP, THINK, AND THEN TAKE TIME TO.SEE WHAT HE REALLY NEEDS. I've known quite a few parkies who have gone many years doing quite well. Don't know your situation but my guess is if he's just diagnosed he's been functioning for a while.


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