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Dont know if my dad will make it

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Parkinson's Disease
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Posted 2/26/2011 7:18 AM (GMT 0)
Hello...

I have been watching my dad suffer from Parkinson's Disease for about 9 or 10 years now. He has tremors and balance issues, and has lost quite a bit of weight. He does not like to talk about what he is going through...and always says, I'm fine. He pretty much refuses to go to the dr, and when he was seeing one, the medicines did not work. He never went back, so he has been without treatment for many years. I worry for him. When I saw him at Christmas, he had lost soo much weight, and he looked soo much older (he is nearing 70). He has always been a worker and busy. Now, he can't sign his name, has to sit to pee, take a minute to gain his balance before walking, and his walk seems to be turning into a shuffle.

We live in different states, so I don't see him often, and when I do, it always seems to be more shocking and I usually cry at how he looks. What is he in for??? SInce he doesn't talk about it, I don't know what he's going through, how he's feeling, or even what stage will be next...,.. I honestly think he is too proud to go to a dr again, and is just going to let the disease win.

Any advice, stories, heads ups, will be greatly appreciated.

Thank you...

 

Posted 2/26/2011 6:18 PM (GMT 0)
Hopeful
I was diagnosed 3 1/2 years ago. I am 66 YO. You cannot tell that I have PD.
There are drugs that came about in the last 9 years since your dad saw a neuro. One is Azilect, which I take along with Artane. Azilect has been shown to slow the progression of the disease and control symptoms. With it I still have some tremors. Artane stops that. They may not help with the stage your dad is at.
Your dad needs to see a movement specialist, no just a general neurologist. They specialize in PD and similar diseases.

Talk to him.....he needs support.

If you think it will help I will post a note to him, as a fellow sufferer.

Dan
Posted 2/27/2011 1:27 AM (GMT 0)
Dear Hopeful
I am in the early stages and when it comes to seeing a neurologist I am hopeless. My basic outlook and values have changed. I think it is because I do not think the doctor can do much and sitting in a waiting room and travelling to the doctor (about minutes each way) is all a waste of time. Had I had seen the way I conduct myself with respect to PD years ago I would say I was totally stupid!
The viewpoint that I have is that my time on this earth is limited and the future is not nice!
I think there is also the fear of going to the doctor and not getting much of a result is quite demoralising.
What I have said sounds totally silly but it is a common fact.
Having said all that I have promised a number of people that I will attend a specialist PD unit at Concord Hospital just to shut them up.
I much prefer to see my local doctor...although what he can do is limited at least he is intellegent and really tries.
Port Mac
Posted 2/27/2011 3:19 AM (GMT 0)
Port Mac
Your negative attitude will not help you.

Please don't inflict it on anyone else.

Dan
Posted 2/27/2011 1:55 PM (GMT 0)
Dear Hopeful
finding the right doctor and the right medicines is extremely important
convince yr father,it will really help
my mom is fighting PD for 2yrs ,she is 65, she was reluctant to visit the
doctor and her health was so bad that she was bed ridden. but after taking medicines she is better. 5 months back my father(who was her caregiver)passed. i do not stay with my mom ,she is alone but learning to b independent. i keep visiting her
xxxyyyzzz
Posted 2/28/2011 8:46 AM (GMT 0)
Hi Hopeful, it is never too late to seek the help that one needs and your father, somehow, has to be persuaded that there could be very beneficial improvements in his condition if he were to to gain access to appropriate medication, but how that may be done is the question. New drugs are being trialed all of the time and there are standards such as sinimet that can make a difference even at the stage of pd your dad has reached. Has he read this forum and the , mostly, good advice and experiences that are forthcoming here? He may be encouraged by what he reads. I am 5 years post diagnosis and eight years post my own knowledge that I had this unwanted visitor and have probably had it for a couple of years or more before that. I have been taking levodopa for three and a half years without reaction [I also take an agonist which brings with it its own bundle of fun]. I fully understand the way your dad may feel as we have all to a degree been through such phases but some much more seriously than others. I am thankful I have managed to remain positive in the main. You may have already done this but show him relevant web sites both over there and here in England where information on meds is available e.g. the Cure Parkinson's Trust, it may help encourage him to seek help even at this late stage.

By the by, I don't think it is helpfu to be dismissive about the way others are seeing themselves or their condition [not you Hopeful] others come by here looking for support no matter how they may feel. Putting a downer on them is really going to make them feel better within themselves isn't it? Not. The future may not be bice for any of us but it is more helpful, don't you think, to keep pointing to the positives until we get there rather than be dismissive?

keep taking the tablets

the bear

Post Edited (The Bear) : 2/28/2011 1:49:30 AM (GMT-7)
Posted 3/1/2011 1:59 PM (GMT 0)
My mom has had PD for 10 years and luckily it has progressed fairly slowly, partly due to the medications she takes. She sees a neurologist who is very informed and takes the time to answer questions from me and my dad. He focuses his attention on mom, but answers questions easily. My mom is turning 80 this year and with our persistence she still does her physical therapy exercise, movement and exercise are critical as well as takes medication with a system set up by me I put three weekly minders in a tray with three sections, so she just has to find the AM, afternoon or PM tray section and then open the correct day. She still needs reminders by my dad to take them three times a day, but she feels some control in the situation. My dad is 86 in May and just hired someone to help with exercises and a bit of cleaning to help them out.

You may want to go with your dad to the doctors, sounds as if he is proud and wants to deal with this alone, unfortunately that can not happen for too long without help. If it progresses rapidly, he will need help in the home to do tasks such as dressing, bathing, cooking, etc. Care.com is a good way to find less expensive help in the home. Home Instead is a national agency, but a bit more pricey.

At 70, he could slow the process down. A frank discussion of these posts may help him realize what others do and what he could do to help himself. Good luck, it is difficult for me even when I live in town, much more for you living long distance.
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