For those who care for someone with Parkinson's disease
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By Mari7254 On 2014.05.27 14:00
Hi everyone-I have been reading the posts for about a month and decided to go ahead and register. My husband is a 100% disabled Veteran, diagnosed in the fall of 2001...also has heart issues and dementia. Bless his heart, he took several falls in a row about 6 weeks ago and fractured ribs and T12 and L1 in his spine. He is in a wheelchair now, has good & bad days as most PWP do. I am lucky enough to have assistance through the VA but caregiving is the toughest thing I have ever done.

By jcoff012 On 2014.05.27 22:12
Hi, Mary! I should have said that earlier, but for a few days, it is me who has doctor appointments! Today, I spent an hour and a half with a new primary care, blood draws and tests. Tomorrow a mammogram and Friday we drive 224 miles to my oncologist! lolol...I have to have a colonoscopy next week, too! I had uterine cancer so the doctors run a LOT of tests every year, sometimes twice a year...So, for now, it's my turn to spend time in doctor offices!

I wish you welcome and hope your PD journey is one of hope and love. Come here often and comment. We are really like a family...when one is hurt, we muster around...we also laugh together and help each other along the way...Good luck and let us know when and if we can help you...Hugs, Jane

By LOHENGR1N On 2014.05.28 00:11
Mari, Welcome to the forum. You've found a great resource to aid in your journey with your loved one. Please feel free to ask anything you need answers to and someone here will come up with information to help you. Don't be afraid to ask questions, if we've had them before our answers will just be quicker. We realize that everyone is in a different place along the path of P.D. and that things some learned awhile ago are new to those just starting this journey so don't be afraid to ask questions. Again welcome to the forum.

By moonswife On 2014.05.28 03:24
Welcome Mari. You have joined a group that wishes we were NOT a group, but individuals that still had our old lives. This forum is an incredible resource, outlet and comfort in the long, lonely night. Trust the wisdom of people like Al, the faith of Jane, the tips from Jo and admire the enduring love of all fellow caregivers. We all suffer when there is a loss, and know we will walk in those shoes one day.

By JulieB On 2014.05.28 08:35
Welcome to you, Mari! I have also found much help and understanding here. Keep visiting and posting! God bless you and your dear PWP... xoxo

By Mari7254 On 2014.05.28 13:47
Wow- I am overwhelmed with all of the wonderful welcomes! Sometimes it feels like we are all alone in our "journey". Jane-I can't imagine what you are going biggest fear is that I may get ill or injured and there is no one to take care of Roger most of time (we have an aid 3 hours a day).

By Daybyday On 2014.05.28 14:14
Mary, welcome to the group. I thank the good Lord there is this outlet for us to share and participate in. Sometimes we just need to communicate with people that can relate to our issues. This road can feel so lonely start thinking that no one knows what you are experiencing. None of us knows what the future holds but we just try to get thru each day as successfully as possible. Do you do transfers from chair to bed and vice versa? How long has your Hubby had Parkinson's? We all feel for you in your situation.
Jane, good luck with all your tests this week. We will be thinking about you and praying.

By VioletV On 2014.05.28 15:04
Another welcome, Mari,
This is an amazing group of supportive and caring people--strong, compassionate and realistic. We can say here what can't be said anywhere else--and that makes an enormous difference.


By jcoff012 On 2014.05.28 18:14
First, please allow me to apologize for misnaming you...I type at the kitchen table in the evenings and if Carl falls asleep in front of the tv, I don't turn on a light, so....Welcome, Mari!

I also didn't mean to say my health issues were more important than someone with PD...far from it...I have dealt with my cancer for seven years now, so I can handle it! Just decided that although I dearly love my first doctor, I need to get one closer to home because someday without warning, the four hour trip to see her will be impossible with worsening PD issues...Just being realistic. Onward and upward. Thank you to anyone who is thinking of me, but I truly am fine. We all do what we have to do, don't we?

Mari, I am so glad that others came on to say will soon know and understand that we come from all walks of life, different religious and non-religious backgrounds...but, we are all battling this disease.

Steve and Al are amazingly talented, giving, and kind PWP and I always search out and count on their advice. Dan is one of the few kind souls whose wife, June, is his PWP...he brings aloha and light upon the life of a husband fighting for his wife. Then, we have Carman, Grammy, Michelle, Violet, and many others whose spouses are at different stages of PD...we try and try to be there, to encourage each other...or simply to listen....sometimes, that's all it takes...

Take care all...I will be thinking of you as we head up north tomorrow...We actually are having dinner with several couples who have been and are our friends from Carl's career, then my doctor visit, then off to the coast for two days...It becomes more and more a trip of limitations and resting, instead of the "normal" shopping and hiking by the ocean, but we are still able to be there, so it is special....Hugs to all, Jane

By carman96 On 2014.05.28 22:12
Welcome Mary,
Sorry you are part of the club that we all wish we didn't have to be in. But there is a lot of wisdom in this group and I've learned a lot. It's good to know we are not alone in this difficult journey. Lots of support here.

By dans316 On 2014.05.29 09:59
Welcome to the Forum. It can be a source of comfort and information.

Just wanted to mention that there was also another new poster to the forum in recent days, jsf who posted in Grammy's post, Feeling Sad Today, so a warm welcome to her also.

Me Ke Aloha

By Mari7254 On 2014.05.29 18:20
To Daybyday (what an appropriate name!)-he is very unbalanced and shaky but yes...I do have to help him with transferring from the wheelchair to potty, bed, etc and back. It takes some patience and his occupational therapist has been working with us to do the transfers as efficiently as possible. He needs a gate belt getting in and out of the shower but the aids do this. I am not strong enough (5'1" and 100lbs) to support him if something happens. Scary every time...he has been diagnosed for almost 13 years.

By jcoff012 On 2014.05.31 13:18
It is now Saturday and the mammogram and my annual cancer checkup are finished...all looks well, just waiting for test results to verify all is fine. Next week, I have a doctor visit to discuss my blood tests, then maybe I can relax a bit! I liken a cancer journey as a never ending time of worry...I think it's because even after you are told " looks like we got it all this time" (after three surgeries), there is always the lingering doubt of recurrence...however, most days a cancer survivor puts it in the back of one's mind...unlike PWP, we have the chance it WON'T recur...

Just wanted you to know not to worry about me...we are survivors...we know to live and love each other while we sense in worrying about what MIGHT happen...hugs to you, Mari, and I hope you are well...I am! Jane

By Mari7254 On 2014.05.31 20:59
Jane-so glad that you are ok! I have many friends that are cancer survivors so I am familiar with the ongoing background worry that it may one day rear it's ugly head again. My prayers are with you. I have read many of your posts and are amazed at your constant positive and attitude. I hope that it will rub off on me!

By jcoff012 On 2014.06.01 12:12
The fact that we all come here is in itself a positive step. We are often here because we need common sense answers from those who live with PD. I think if you read between the lines on some of the somber posts, what you really see are battle weary caregivers...not people who are just angry...rather, people who miss their former lives, their physical closeness to their loved one, and just exhaustion from lack of sleep. Carl and I have been through a 22 year journey with his Mom's PD, so we are often better equipped than others in knowing what to expect. Having said that, I came here because I was searching for answers, too, and found will also...You will find that if someone CAN help, they will...don't think there are many posts left unanswered...Keep posting...and, again, welcome.

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