Never thought watching would be so hard

Hello,

Glad I found this place. Last fall, my father (in his mid 50's) was diagnosed with PD. At first, it was a relief, since I thought prior to the diagnosis that he had had a stroke (slight limp, holding one arm close to body, etc).

The relief I initally felt has passed. And now I find myself at a loss. I live about 2 hours away from my family, so the majority contact with my parents is via phone and email. And when my daddy has a down day, he emails me.

I don't know what to do. I don't know what to think. Can anyone else here dealing with PD as a family member rather than the patient give me some advise? I'm watching my daddy have to adjust to life with PD and when he has a hard time with it, I have a hard time with it.

Thank you.

My 46-year-old husband exhibited symptoms about a year and a half ago. The doctor told us that it was "Essential Tremor" and not to worry about it. A few months later, he became violently ill and the next day he could hardly move. At first, his doctor thought he had food poisioning and then, viral vertigo, and treated him for those disorders ... but he just never improved.

In researching his symptons, we began to think it was ALS. We saw a specialist at Johns Hopkins in Baltimore, and was told that it PD. At first, we were so relieved that it wasn't ALS, that we were happy. But this is just as bad -- only slower.

That was over a year ago. He takes Mirapex (3x/day) and recently Amantadine (2x/day) was added. The Amantadine helped stabilize his walking. He's doing well on that medication, but we were told that it is only temporary.

I helped my mom-in-law thru hospice and helped her find a death with dignity from Parkinsons and I know what you mean about how difficult it is. My only advice is to do TODAY anything you are possibly planning. DON'T WAIT! DON'T PUT IT OFF! Go and do... talk and laugh, now! Parkinsons steals the one you love by inches every day and it changes them to someone so different from the hearty happy person you remember. Do whatever you can to involve them in whatever is going on. We used to take a video camera whenever we went somewhere fun that she couldn't join us... Totally taped our trip to the Mall to do Christmas shopping... passed the camera around... Lots of clowning for the camera... Store personel were super when we told them why we were taping. Sat with her later on a good day and went over the film together... So much fun and laughing! And if I had the chance to go back in time the one thing I would do is get mom a scooter (they weren't so available 5 yrs ago) so she could go places with us. She HATED being in a wheelchair. The scooter might have gotten her out more. She was so embarrassed about her symptoms.

Be strong.. pray hard... keep helping. You will be a better person for it.

This is so helpful.  My Dad was just diagnosed last Wednesday and my mom finally told me Monday night.  My Dad called me shortly thereafter trying to be up and cheerful but I could tell he was sinking.  It is one of the hardest things I have ever had to deal with.  I was very anorexic when I was younger and hospitalized twice, my dad has lost both of his parents, and his sister committed suicide.  I don't understand why he has to suffer through anything else.  His life has been hard enough.  He has always been very active and grew up playing hockey and loves to ride his bike.  The thought of him being immobile is just about killing him.  He said he would rather die than be confined to a wheelchair which absolutely breaks my heart.  I live in Boston and he lives in NJ.  I feel so terrible being so far away and I wish there were something I could do....