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Topic Reality Sets In Go to previous topic Go to next topic Go to higher level

By TwiceCursed On 2016.05.24 22:27
My spouse was diagnosed with YOPD at 49, so we are 7 years into this. Struggling with med amounts and timing (typical I'm finding out) and ever increasing debilitation, no state of denial for either of us, but today I reacted to a fall and the resulting spilt milk (no expression, literally, milk was everywhere) with impatience and little regard for whether he was hurt. I'm just pissed off at PD. It is not his fault, but I know it is going to get worse, not better. Mostly his pride was hurt, but it sent me into a head shaking "I can't do this, I can't do this" state of mind...you see "Twice Cursed" is in reference to growing up with a cerebral palsy sibling - I had to share a room with her, I had to help her all the time with everything, including pouring her milk because she would spill it. And the only way I could get away from her was to grow up and leave home. Now I am facing being a caregiver again and after 30 years of raising children (yes, they were spread out, and still supporting one in college) I am TIRED. I am a breast cancer survivor and don't know if I can keep caring for others (maybe this is why I got breast cancer? - did not take care of myself?). Sounds like a pity party I know, but I just found this forum and hoping for some sanity, some advice, and anything to help me find courage and patience. I just don't know that I can/will survive 20 or more years of PD caregiving. Options???

By polyparkie On 2016.07.04 07:32
Hi Twicecursed;
I can understand where you are in so many ways...
You see, I am the same age as your DH, 56. Although unlike him, I was blessed with JOPD. Yup, that is Juvenile Onset Parkinson's Disease. My first symptoms were back in about 1974/5, When I was about 15 years old. Although my progression has been slow, it has been insidious... Fast forward to 2014, I had DBS surgery, it took care of 80% of my tremor, Bradykinesia, most of my rigidity, and 90% of my Dystonia... but, it came with a cost, Today, my gait/balance is total crap... I fall at least once a week (usually more), I sit in a chair and end up tilted to one side to the point that I've fallen off of or out of the chair... (not fun)..
Now here's where it gets frustrating.... Last year we finally figured why my DW was having so many problems of her own......... She was Dx'd with MS... and the Neuro up at the VA said that she probably had had it for several years.... So, now the patient becomes the caregiver, although on a limited basis.... Especially since I had to give up driving this past spring....
So I look at it this way....
1) God isn't going to give us anything we can't handle
and
2) As you already know, there are diseases WAY worse than PD out there..... to deal with....
Also I have had a dear friend that has had PD for several years, took her DH to the Dr. only to leave with him also Dx'd with PD, probably due to agent orange in the Navy during Vietnam.....
So yas, it could be worse...
Hang in there... I'm pulling for you and will send some "spoons" your way...<smile>
Michael

By mylove On 2016.07.05 23:35
Michael, my DH is YO too (fertilizer/pesticide/heavy metal exposure as a teen/young man). He says "keep on keeping on...what else ya gonna do? Give up?" ;). He's just given up driving too. Long story....

I like the way you think. Welcome to the forum! Also, the caregiver forum is much busier than this one. Feel free to come over...we have a couple patients in there as well.


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