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 mom has had Parkinson's for about 10 years now. I have watched her lose a lot of weight and watched her lose her motor skills. I think it's more the medication that does that. If mom doesn't take her medication she can hardly move. What really bothers me is she is so concerned about the way she looks to other people. She will appologize for being so slow or wriggley ( side effects of meds)...She has been depressed in the past but I think she's OK now. She gets tired very easily. My mom, before this illness, was very fit - she hiked and was just a energetic person. Now her life revolves around when she takes her medication. I finally convinced her to get in touch with our local Parkinson's support group and hopefully she will take their advice. I think her medication needs to be adjusted so that her quality of life is a little better. Maybe your father's meds need to be checked. Also make sure his neurologist is the best he can get. I'm thinking my mom's neurologist may not be up to date with the latest treatments...I'm going to check it out. I feel for you because I am going through the same thing. It's hard to watch a loved parent be consumed by this devastating disease.
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.
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.
Hi 02/07/05
I agree with you, watching is hard, but, he took care of you , mentally and physically when you were small, it's your turn !
I lost my Dad to heart disease almost 12 yrs. ago. My husband, age 52, was diagnosed with Parkinson's at age 46, he is now early stage 3. I often tell people that I sometimes think it's harder on the "watcher" than it is on the patient.
Muggy
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.
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
Be strong.. pray hard... keep helping. You will be a better person for it.
~ Jeannie
"As one goes through life one learns if you don't paddle your own canoe you don't move."
-Katherine Hepburn
Hi
New to site so just seen your post. I watched my father deteriorate over 25 years as a result of PD. Lile you I live too far away to visit daily, but kept in touch by phone.
No-one can give you an answer, but I'd say continue your contact, visit as often as you can - I regret not doing so when Dad was able to communicate and was still more of the person I like to recall. You can't get him out of the depresion, it's part of the PD package, just let him know you're there.
Make the most of every opportunity to make contact and treasure each one- all too soon the PD may take these away.
The advice above is excellent - get the best Drs and meds you can and use internet and this site to keep up with latest developments.
Lastly, don't forget to contact Mother, siblings and family and friends to share your thoughts and feelings. I didn't and ended up with a complete breakdown this year.
Hang in, pray for strenght to deal with the difficulties ahead, but mostly just enjoy every moment you have with him. You'll be glad you did in the long run.
You will be in my thoughts and prayers
Stumpytroll
New to site so just seen your post. I watched my father deteriorate over 25 years as a result of PD. Lile you I live too far away to visit daily, but kept in touch by phone.
No-one can give you an answer, but I'd say continue your contact, visit as often as you can - I regret not doing so when Dad was able to communicate and was still more of the person I like to recall. You can't get him out of the depresion, it's part of the PD package, just let him know you're there.
Make the most of every opportunity to make contact and treasure each one- all too soon the PD may take these away.
The advice above is excellent - get the best Drs and meds you can and use internet and this site to keep up with latest developments.
Lastly, don't forget to contact Mother, siblings and family and friends to share your thoughts and feelings. I didn't and ended up with a complete breakdown this year.
Hang in, pray for strenght to deal with the difficulties ahead, but mostly just enjoy every moment you have with him. You'll be glad you did in the long run.
You will be in my thoughts and prayers
Stumpytroll
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....
Hi Meg
So sorry to hear your Dad's story. The part about not wanting to carry on if immobile is so reminisent of my Dad. Give it time - you've all had a huge shock and will need to grieve for the life that has gone. With time you will all - including Dad, be able to see the positives in the situation. For one thing this awful news tends to bring families together.
All you can do is be there, stay as positive as you can, but don't be afraid to sya how you feel - it will encourage others to do the same.
There is no easy answer. Make the most of the good times - we made up little books of photos of people and places to help Dad to remember things when his memory started to go. Be positive, we investigated motorised wheelchairs and made it into a family joke - the grandchilren offered to add speed stripes, and Dad was refered to as 'Ironside' when the time came.
Most importantly keep posting. You will be in our thoughts and prayers
Love and hugs
Stumpytroll
So sorry to hear your Dad's story. The part about not wanting to carry on if immobile is so reminisent of my Dad. Give it time - you've all had a huge shock and will need to grieve for the life that has gone. With time you will all - including Dad, be able to see the positives in the situation. For one thing this awful news tends to bring families together.
All you can do is be there, stay as positive as you can, but don't be afraid to sya how you feel - it will encourage others to do the same.
There is no easy answer. Make the most of the good times - we made up little books of photos of people and places to help Dad to remember things when his memory started to go. Be positive, we investigated motorised wheelchairs and made it into a family joke - the grandchilren offered to add speed stripes, and Dad was refered to as 'Ironside' when the time came.
Most importantly keep posting. You will be in our thoughts and prayers
Love and hugs
Stumpytroll