For those who care for someone with Parkinson's disease
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Topic DH newly diagnosed Go to previous topic Go to next topic Go to higher level

By countingmom On 2013.08.17 16:02
We found out a month ago he has PD. We suspected it but when you get it confirmed, its a whole new ballgame, as you well know. I'm still trying to come to terms with it, he is 56 and I'm 54. We had plans! He is retired army and this is very hard for us. He is worried about me, and I'm worried about us. I work full time and we began farming and selling produce after he retired. Not anymore a couple of years ago he just couldn't do it any more, could not stand the heat, lost all interest. He has tremors on both sides. also internal tremors, slow thought process, very fatigued, balance problems. No interest in doing anything. We decided to forgo medication at this time, he already is on anti-depressants. sorry to just go, just thought I'd give a little background.

By Jenztrenz On 2013.08.17 18:12
I know exactly how youre feeling! My mom 64 was diagnosed with PD for about a year now and iʻm (43) the ine and only that does her caregiving. It can get overwhelming however iʻm here to tell you take a deep breath and relax... You have to take care of yourself too... I started to get anxiety attachs and high blood pressure because most of all i was on the go and angrybon the inside which made things worst.... Things wont change overnight though setting up a plan would be advised. You took the first step to reach out on this forum which everyone has been extremely informative and helpful. You tube has alot of helpful excercise programs to start with. Ive seen alot of positive testimonies by doing excercise. Others on here can give you more information too. Also check with your state for PD organizations. That will support your needs too. May God Bless all of us on this journey.......

By countingmom On 2013.08.17 21:22
Thank you, I'm glad I found this sight, We are all about planning and even though I see all the things that can happen we feel knowledge is power. We have always planned for the worst and hoped for the best. We never saw this happening to us, but who does. It helps to know how other people,"real people" are dealing with this, not just a Dr. telling us what to expect or not. I've learned a lot just reading the different topics on. We have also purchased a couple of books. I am grateful to have found this forum.

By Poostie On 2013.08.17 22:07
From our experience (my husband is 83 and I'm 78) the advice I'd give is to take it one day at a time and think positive. Ten years ago when my husband was diagnosed we thought we'd best move from our little country town to a bigger place to be nearer to children and doctors. The Parkinsons hasn't moved as quickly as we had thought and looking back I think we probably could have managed fine in our little country home for several more years. Also my husband loved woodworking and when we moved he sold all his power tools thinking he wouldn't be able to use them. Six years ago he was so bored in our new location that he built a new workshop, bought more tools and is out there working almost every day. It is a real blessing for him to have something to be excited about. I must say though, our sons when visiting say that they can't stand to watch Daddy out there working with those tools. I say if he has an accident, he has an accident and we'll deal with it or at least he'll die happy. In other words don't speculate too much on what the future will bring--I wish we hadn't. From reading this board I'm reminded every day that each case is different and what is so for one PWP won't be for another.

By countingmom On 2013.08.17 22:23
Is your husband on medication? We want to wait as long as possible not to take it. My husband is very pessimistic, he thinks if it something bad it will surely happen to him. I'm hoping that the PD will not start progressing very fast and he can see we have plenty of time. It is just still hard for us to get use to, hopefully we will not let it consume us.

By LOHENGR1N On 2013.08.17 23:44
countingmom, Hi, welcome to the forum. You have found a great site to help you along this journey. Any questions you have ask away all here will try to help however We can. Just being diagnosed is a lot to handle and try to wrap your head around! And yes it is scary and confusing. I'm one of the patients here with PD, I was diagnosed in 1986 shortly before turning 34 and just turned 61 last weekend, so we never know how long we may have. Back then 15 years was the norm maybe 20 if lucky, but with more and different medications now who knows. There are a few others with PD who post here also.

I'll let you settle in and meet others as they respond to your post. As I said it's a great bunch here, again welcome and don't be afraid to ask away. Take care, best of luck and hang in there

By parkinit On 2013.08.20 00:20
I, too, understand about plans. My spouse has said so many times that we work hard for this time of life...retirement... and then to have all the dreams and plans taken away is a bit tough.

Welcome to this board. I like that you plan for the worst and hope for the best. You will learn as the disease progresses that you both will have to give up more and more, but you create a different kind of life for yourselves. You slow down, you appreciate more the small things. You simplify your lives as much as possible.

By olpilot On 2013.08.20 04:55
I was diagnosed age 59
when I was still flying
for us the diagnosis wasa relief rather than a tragedy we knew something was wrong twe were glad to know what we were fighting against. I had some pretty serious balance issues and started medication right away.
I am so glad I did because you change things in ways I never imagined and fix things and I didn't even realize what part of it.

I too love woodworking, really about 50 years but when I started I just couldn't stop.last year we started selling things at farmers markets and craft fair.and it was slow with the beginning.this year seems to be a different story the wood working for mere has become the form of therapy. with the side benefit of selling some and we have been selling fair amount. the woodworking seems to give me a reason to keep on going reason to get up every morning and something to look forward to. being diagnosed with Parkinson's disease has not been toand to has been a beginning to a new life with lots of changes, plenty of worries and fears,.but it hasn't been all bad.

I understand the fear of medication and being overmedicated but I also realize that I could not be doing what I am doing without the medication. I certainly can't see that this is a good thing or the best thing that ever happened to me, this is by far definitely not the worst thing could have happened. my wife panicduring the day if she can't get ahold of me, and it's usually because I can't hear the phone ring.but she has talked to friends to look and make sure things are ok.we didn't stopliving because of Parkinson's we just live differently than we used to. we just adjusted.

as I write this I do it talking to my smartphone because typing is just too difficult.this with everything else it's an adjustment, typing just takes too long and too many corrections.John Lennon said living is what happens when you're planning. or plan at this point of life was to be living on a sailboat, instead my wife still has to work to provide medical insurance and I do woodworking to sell at craft fairs. not what we plan ned, but for now this is our life. crying and worrying would be easy but that's not who we are. we have come to love going to the fares on the weekends meeting with new people talking to strangers and learning how to sell. one thing we always do is have pamphlets about Parkinson's disease for people to see ask about.I don't use it to promote my woodworking but I certainly tell people about Parkinson's.we also formed a support group for the area and we use the pamphlets to get people who may have the relationship to Parkinson's to come to our meetings.some people ass some don't I don't have a visible tremouer so it's not obvious.

there's nothing funny about it but there certainly is life after it.

By McCall On 2013.08.20 08:35
I'm sorry you are in this situation. I am concerned though that if he has all those symptoms that you mention that he is not on medication, because it can make a big change in how he feels and what he can do. I seriously hope you both will reconsider that. Sinemet does not make things worse, in fact it makes them much better. Be sure you read all you can on the subject of PD. and visit all the forums you can online. the more you know the better you can cope.

By countingmom On 2013.08.20 16:58
Thanks for your encouragement. It is good to see that you really can go on, even though the plans we had made for our future will have to change now. We do have hope thanks to ya'll. His big problem as I see it is PD Apathy, at least now after diagnosis he knows why he feels the way he does and that does help, but its sad for him not being able to be interested in anything anymore. I read the meds sometimes made that worse. we wasn't sure when to start the meds. We just don't know what to do. Thanks for your helpful comments!

By LOHENGR1N On 2013.08.20 20:31
The big problem right now is both of you are facing the grieving process with the diagnosis and it is normal. You're both in a spin, both confused, angry at the loss of the future you envisioned. The unfairness of it all, feelings of why me or us? Mad, frustrated, depressed, denial, and this is all normal. It is normal to feel this way. I always believed that when a disgnosis like Parkinson's Disease is given the Doctors should also handout a booklet describing the grieving process and how it relates to disease and to caregivers and patients alike. But most head home in shock and overwhelmed by feelings not knowing why or where they are coming from or even that they are a normal reaction. Take a breath read on grieving sort out the feelings it will take time ....allow it to take the time it needs.

By countingmom On 2013.08.20 22:18
Yes, you are so right, everything you just said is us! I is nice to know someone really does understand. This is certainly a confusing disease the not knowing day to day what will happen or if anything is going to happen very difficult. I'm sure we will settle down at some point. Even though we knew or thought we knew, the Dr. confirming it left me absolutely speechless! Thanks for your understanding, its hard for me to talk about it to friends without tears. This forum is going to work well for us I think.

By jcoff012 On 2013.08.20 22:52
One thing to add, if I may...Listen to the advice here, digest it, then face the unknown with the knowledge that as much as everyone would love to give you (and us) a definite rate of progression, no one can. Your PD journey will be uniquely your own. There are those who are dx at a very young age with all the issues that the dx thrusts upon them. Then, there are those of us who, like you, had other plans, well thought out, well financed, well deserved plans and now, this...uncertainty and sadness...

But, remember, try to think of living with PD as a new life journey. Try to live with the changes, to adjust and find ways to manipulate your physical life...We now have a handicapped placard because I have lymphedema and asked my doctor for husband now sees the value of it for himself, as after a shopping adventure, he is able to still load the car because he isn't so worn out because he doesn't have to walk so far! Now, he says he is going to ask his neuro for one! Concessions...My husband was a Marine...strong in body and strong in he is a frail man, but still loving and kind.

PD is scary for both of you, for all of us. We know what to expect because his Mom had PD for over 22 years, but even with that knowledge, having the man you love have PD is NOT the same.

As my oncology team told me, and I heard my son's oncology team tell him, laugh every day...EVERY day...find something that makes you laugh and you will find release and relief and be able to better face each day. Right now, it is overwhelming and you are grieving...soon, you will pull yourselves up and fight...and you will get through all of this...and many here will be by your side...NONE of us want to meet this way, but we are here...just call out...someone will here...Hugs and love to you and yours, Jane

By carman96 On 2013.08.21 15:41
I suggest you find the best movement disorder specialist that you trust and take their advice. Medication helped my husband have several years with symptoms controlled by the meds. We were able to travel quite abit in those years. Now it is very much more difficult to travel. He is nine years after diagnosis and is going downhill fairly rapidly now.
Don't think too far ahead for now. Enjoy your life.

By moonswife On 2013.08.26 19:38
Countingmom, my DH was diagnosed long ago. He was still working a physically taxing job. Had DBS in 2010. No more tremors, but the ghastly disease progresses. He had a total knee replacement last week. Not PD related, but necessary to keep standing upright. Best of luck, and ask this forum every question you think of. It has not let me down ever. Justine

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