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Topic Well, the shoe is on the other foot Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2013.06.11 17:39
I know I haven't been around much the last 6 months, with starting our new foundation and hosting several events, plus trying to put together a conference for the Carolina's. It all keeps me very busy. I wanted to stop by though and tell those of you who have known me these last 5 years and say hello to any newbies!!!

I guess you are wondering why the title of this post......

You just never know what is to come your way in life. We accepted the dx of Jim's LBD for the first 3 years and are much better with his straight up A-typical dx now, but here's the kicker...

Three months ago I started a regimine of 10/100 low dose Sinemet taking 1 pill every 8 hours....here it is three months later and I am taking 1 10/100 every 4 hours and probably will have a med change when I see my PCP tomorrow...
I need a referral for a neuro and will be going to MUSC as we have used up every Neuro in the midlands and low-country of SC...lol... I told my doc three months ago NO Agonists...NO nothing but pure SInemet....I know the longevity of this is not the greatest... However I am 55, and if I get 25 years out of it.....I am good to go....

As I said before...you just never know what direction life will take you....Many times throughout my stay here at this forum, I was criticised for me seemingly always to be on the side of the patient...well...maybe there was reason for that...as I see now....

As someone who went through helll with their PWP, a wrong diagnosis, the wrong meds, the withdrawl, three times them saying it was the end.... I know the anguish of a caregiver... i know the hard times it can cause... I know the loneliness and isolation.....but now I can say I know the pain, I know the feel of dystonia, I know the denial...which after preaching it so well...I still wanted to put all my symptoms off as something else....I know how to care for someone with Parkinson's disease. I gave advice here for over 4 years...I have been an advocate and now have our own foundation for PWP...I have attended PAN forums via internet... we are in the procesof becoming an NPF chapter in SC...I have seen webinars and seminars and confernces.... I have done fundraising....I know Parkinson's Disease...but let me tell you this...Can I handle Parkinson's disease myself?????

Truthfully.....not doing so great a job as caregiver for myself...I guess practice what you preach isn't registered in my head yet...lol

I miss doses... I have taken 2 pills because i thought I didn't take one and let me tell you...when someone says they have dyskenesia and it hurts....BELIEVE THEM!!!! IT SUCKS!!!!! I laughed...we laughed....as we knew what i did and what was happening...and by the way...it does no good to sit on your hand or lay on your arm to try and make it stop...lol...waste of time and energy....energy you lose anyway....

I am different than my Jim...gee..have you heard that before???? a difference???

I have left foot drag and left arm curl with the whole left side of my body being affected... I get dystonia in my left foot, hand and stomach area... I have the stiffness, rigidity but no tremor.....I am hunched over and shuffle along with the foot drag.. makes for an interesting walk through the park!!!!! Jim bears left...i bear right....crash bang or get out of my way!!!!

So what do we do now you ask???? Both of us have PD now.. who takes care of who????

I find it interesting that my diagnosis comes after Jim's gets straightened out...He's not as bad as he used to be...I even had started working part-time, still am for now....don't know how long I can keep up as it is in food service and some days are much harder than others.....

God never gives you more than you can handle...always remember that as you continue on this walk we call Parkinson's.

Truthfully...I would take an awful day of caregiving, crying my eyes out alone at home after they told me...this could be it for him.....then those 2 hours of dyskinesia....but here I am...ready to rock and roll....I will be as determined a patient as I was/am a caregiver.....it's a mindset....strong vs weak ... I want to be a stronger patient than i was a caregiver and I want to advocate harder now more than ever before......

By jcoff012 On 2013.06.11 17:47
I on't know what to say, but wanted you to know someone has read your post. Bless your heart. Jane

By Imtired2 On 2013.06.11 17:58
Dear Karolinakitty,
I had to read your post twice, out of disbelief. You have been caring for Jim, and now you have Parkinson's too..?? My goodness. What are the odds of that happening...? I don't know what to say, except stay strong and best wishes to you both.
Dolly

By karolinakitty On 2013.06.11 18:13
Imtired2....according to my dear friend who is the Intake Director at the NIH (national institute for Health) in Bethesda...rare....she has been with the Parkinson's clinic for 15 years and has only seen one other case....

That is where two individuals from different parts of the country...met....were partners....one got PD and then the other....

There are quite a few out there who married after they both had been diagnised with PD.....

I am going to the NIH for a screening the end of July....they are very interested in my history...and genes .... Jim was up there in November...they did a more indepth gene marker study than 23and me....and he did not have the gene markers.... I have absolutely NO history of anyone having PD either....They think Jim's was triggeresd by his brain injury and it may be possiible mine was environmental... I grew up in Pittsburgh ..played and lived within 200 feet of a small steel mill...they did rolled bars.....

By LOHENGR1N On 2013.06.11 19:54
KK, You walk on Jim's right and He on your left, lock arms and just walk along good and straight! TTYL Al.

By mytngenes On 2013.06.12 00:21
KarolinaKitty, bless you dear Friend. Like the earlier reply, I had to read your post a second time v.e.r.y slowly as I was in disbelief. It will be very interesting to hear what you find out during your visit to NIH. I always thought you were "one in a million"! Y'all are in my prayers.

By carman96 On 2013.06.12 11:39
I'm so sorry that happened. I don't know how you get the energy to start a foundation etc. And work! But I have a feeling you will persevere since you seem like a very strong person.

By Trusting On 2013.06.19 21:45
I just read your post and want to say that I am so sorry for your dx. I can't even imagine how you must feel. I wish there were something I could do to help you.

By parkinit On 2013.06.20 19:55
KK -

You have been such a resource of strength and information for many of us. I hope we can return the favor.

We are very sorry for your diagnosis. My thoughts are with you and Jim.

By lilflower On 2013.06.20 21:25
It's hard to find the right words. God Bless, stay strong and in my prayers.


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