Posted by julie
on October 23, 2000 at 08:46:45:
In Reply to: Re: Words of wisdom from Pete posted by Bruce on October 21, 2000 at 21:58:14:
: : : My husband is 45 and was just diagnosed with PD. We are all just shocked.
: : : I know so little about the disease I feel almost embarassed, but my husband's Uncle also had
: : : PD, so he has had a little more exposure to it. I feel so frustrated I could scream,"WHY US, WHY NOW???"
: : : I know that sounds selfish, I just don't understand. People have told me that there is help for both of us on the internet
: : : so that's why I'm here. Hoping that somewhere out here there is a place where I can learn more about my husband's condition.
: : : Are we doomed? How long will we have together now?
: : : Thank you for letting me vent a little.
: : : MAribelle
: : Hi Maribelle,
: : You have done one of the most important initial things a caregiver should do--admit that you do not have all the answers and you are upfront and honest when you proclaim you want to understand this suff called parkinson . M any who start this journey begin with huge bag called denial and it is a very heavy bag. , They want it all to go away and some how conclude that if they ignore it that it may go away. They burden themselves with this companian who may for a brief time may give them some false sense of security- but facing the truth will hit much harder the longer one waitsJust leave that bag alone if you have ever given it a thought of picking it up.
: : I I was diagnosed in 1983 with pd and probably had approximately the same amount of understanding as you said you did.
: : You said you and your family were shocked--certainly an appropiate reaction.
: : I was stunned. I sat in my doctor's office and just starred out the window for a few min.
: : I feel so frustrated I could scream. This is a disease that if you allow it to do so will eat you up and spit you out with frustration, if you allow it So many things that will affect your lives will now enter(some welcomed and dsome unwelcomerd). You may be confronted with making some drastic and some minor course chanhes in your lives. Again, in your post , you have manifested alot of needed courage by jumping into an unknown scene and loudly proclaiming you want and need some help.. I speak with experience having played in this scene a couple of miserable times in my life., Sometimes parkinsonians get struck with the idea that they can become Self-sufficient. And this can be due to the fact that the meds that a patient might be on may be doing fantastic. And it may be due to the fact that as the patient you have gone 3 weeks and your symptoms have been so mild, that they were bearly noticeable...Most of the tume these things just happen--pd gives you a break for a while.
: : And now for the BIGGY!!!!! WHY ME?? OR WHY US??I do not think you ared the least bit selfish to ask this question. My own acceptance of it was when I was informed in the scriptures that God allowed this illness in my life to help me in my walk with Him. You also never know how your coping may inspire others. (Wife inserted this last sentence.) There is much else I could say about this but I will leave it there for now.
: : For anyone this can be a "family disease" (In our family it is-Carol) She Is my wiFe. And she has been a source of strength during my endurance of this disease. She has heped me in the right amount all these years She allows me to do the things i can do but steps in when the situation demands . She has stood by me when stepping down from my work became necessary and in my adjustying to a differentg life. M y 3 children are there and have been most supportive in dealing with the life of a parkinsonian as well as a Dad who has loved them so much through the years
: : You show intensity in the choice of words that you want to undertsdtand your enemy -and it is an enemy to the caregiver as well as the patient--this enemy just takes and takes and takes from its victims. It is an enemy with no mercy--if you get a break in your battle with pd, it is not because the disease desires to lighten up-
: : In your sesarch for answers to the many questions that will come your way, try to set priorities--those items that may help your husb and's immediate situation would be where i would cerainly suggest trying.
: : I'll end this epistle with a quote from somebody who perhaps knew alot about pd. "Parkinson's disease will not kill you, but, if you allow it to do so, it could aggravate you to death." And i find this a very applicable statement in my pilgrimage with pd
: : you take care--walk with God and may His blessings go with you--pete
: : * Please report any violations to firstname.lastname@example.org
: Pete, That was some of the best words of wisdom I have ever read. Bruce
You have come to a good place for help, I read this board everyday. Find a Movement Disorder Specialist, ask lots of questions. My husband was diagnosed at the same age as your husband. It's been one year now. I've learned much about pd, but this has been the most frustrating year of my life. PD is a frustrating disease and seems to vary so much in every person. My husband just started on Requip (along with his Sinemet,Comton and something for anxiety) This has helped him a great deal. We searched for years for a diagnosis so we weren't shocked. Reach out for help, ask questions, learn all you can of help in your area. Good Luck, julie.