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Topic Seriously ...Am I Spinning my wheels? Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2009.09.18 08:17
my big question is: will different drugs help slow the progression of the disease or is the progression so different in different people that it just progresses as it wants...

I have read the forum now for months and i guess i'm at a whining point where i can't stand the fact that since January he has progressed so far (at least in my eyes). From what i've seen alot have had it for 10,15 and 20+ years, and still have a good life.... I notice also that so many here seem to be a little older than Jim(52),in their 60's and 70's. I figure that Jim has had it for about 4 maybe 5 years. We brushed some things off earlier as things associated with his former brain trauma. The neuro first put in a diagnosis as post-concussive syndrome but then followed with PD. The symptoms are similiar to a point.....I honestly think in the back of his mind the doc still thinks this, so that's why he holds back on the meds. I have asked him to give him a weeks trial on Sinemet, but still says he is not ready for it. So i asked for a referral to the Movement Disorder clinic in Charleston to try and get someone who really KNOWS PD. I have to call today and see if they have an appointment yet, i asked for the referral over 2 weeks ago.
So i ask ... in all seriousness.... is hoping the drug will slow down the progression asking too much ... am i spinning my wheels hoping that this disease will slow down with the right meds or do some just progress more than others?
I know this is a tough question for anyone here to answer in a good way....
I've seen several caregivers lose their loved ones and while i am not hardened to their loss, i understand their grief and relief at the same time....i've been around enough, worked in nursing homes and have been a caregiver in between jobs......honest comments are what i need right now .. Hope is something i will never lose but i also have an intellect side that analizes things to the nth degree(such a horrible trait)...I know getting the right doc and right meds are so important and i'm trying hard that way.....but am i spinning my wheels trying to find my answers........

By kuttlewis On 2009.09.18 08:54
I don't think the drugs slow the progression of the disease. The drugs help with the symptoms, so for a time, it looks as if things are manageable. John was 49 when he was first diagnosed though he may have had it longer. He's now 61. I hope Jim gets his Sinemet soon.

By overwhelmedinFL On 2009.09.18 09:40
I agree that the drugs help with the symptoms but dont slow progression.

I didn't know so many people went so long without getting on sinamet etc. Seems like my mom has been on the drugs since she was diagnosed around 60.

I know for my mom they have always been amazed at her health..she goes to the Mov & Dis clinic in Gainesville FL. She was very active and rode bikes daily , walked daily and swam with her friends... she was doing just great all this time until she hurt her knee.

She needed her knee scoped and had a rough recovery (in comparison with my husband who has had the same surgery 3 times but he is much younger)... Mom's knee had not recovered and then her husband fell and broke his femur.

All of this took away her ability to go exercise, she was stuck home as primary caregiver for her 91 year old husband. Mom is only 71 now so she is about 10 years into PD and this year has been PD on fast forward for sure.

I only hope that moving her into Independent living, taking away all the stress of her house, her husband and cooking will let her focus on HER. I hope she bounces back a bit!!

I hope you get some resolution with the referral and get help for your husband soon. He is young, do they consider him a young onset case? Is there an age where it is considered young onset? I have not read much about it in young people and only know of Michael Fox.

By annwood On 2009.09.18 11:07
The meds do not slow the progression but they do help control some of the symptoms. There are two schools of thought about starting the meds. Some physicians hold off as long as possible so that the drugs are available when the symptoms become unmanageable and others start them early to make day to day living better. In my husband's case they started at the very beginning. The down side was when he had progressed to a certain point he was already at his maximum dosage of meds and there was nothing else to be done. The PD meds have a great many adverse side effects and for that reason it may be wise to hold off on them. When push comes to shove I think it is the physicians call and how he believes.

The disease seems to be different for everyone with no two cases being alike. I also know people that have had the disease for over 25 yrs and are doing reasonably well - I believe they are the exceptions. Pre existing conditons, like head trauma, may well result in a more rapid decline.

As for time of diagnosis, remember that PD has usually been there for 20 yrs before diagnosis. They estimate that by the time someone is diagnosed 80% of the dopamine cells are already destroyed.

I sympathize with your frustrations. It is so hard to watch a loved one decline and not be able to do anything about it.

By karolinakitty On 2009.09.18 12:27
First thank you all for your input ....
Young onset hasn't been mentioned
so.. he had the brain trauma in 1997...with coma, temporary amnesia, deafness and blindness, had to learn to walk again etc etc. was given only a 5% mortality rate for 6 months...he beat the odds there but i guess the dopamine was at the start of being destroyed....again the analytical me ....

Called the Movement Disorder clinic about his referral and am ready to explode on his neuro's nurse...she gave them the info to start the file but never faxed the referral or sent the records.....this is the second time his nurse has messed us up.... she's incompetent or prejudiced one of the two... and i don't mean a skin color prejudice i mean the ability to pay prejudice...we have no insurance and pay for everything cash.... i called the office and of course had to leave a message...i'm going to continue to bug the office today until i get an answer or threaten to sue, one of the two......
we were using an outside source to pay for his MRI and EEG..the doc also wanted a PSG (sleep study) they gave them thirty days to schedule the tests. The MRI and EEG were done immediately but near the close of the 30 days, i called to see if the doc still wanted the PSG because the group wanted to close Jim's case. Well i called and left her three messages, telling her i needed to know for this reason and she never called back.... a week after that the office called to schedule the PSG.Too late i told them I can't afford the $$$$ to get it done, and told them how she messed it up.... Now i find out she messed up the referral...It takes two weeks just to set things up and now i'll have to wait another 2 weeks to even get an appointment.....that's a little over a month, at the very least it's incompetence.
When they did the first EEG, we had to go back and do it a second time because they somehow deleted his data. Now because of where we live, we travel 70 miles one way to the doc..that's 140 miles round trip in a cargo van that is not the greatest on fuel ...They know the distance we travel and were very apologetic but this docs office has cost us more time and money than i think he was worth.....

thanx for letting me vent ...i've had it with this doc's office ... the doc is very gentle and well meaning but his staff is something to be desired.

By LOHENGR1N On 2009.09.18 16:17
karolinakitty, You're right, you ask a tough question to be answered in a good way. As far as I know Sinemet makes no claim to slow progression of Parkinson's Disease. It is used to replace or supplement the lost dopamine. As for the Doctor holding off on prescribing it, this medicine unfortunately, Sinemet works best for a somewhat limited time so many Doctors hold off prescribing it until symptoms are worse the medicine will have the chance to best work in lessening the impact of P.D. (Annwood said) I know it sounds awful that a drug is there to help and is held in reserve. However if you think about it, if the arsenal of medication is used up in the first phases of the disease, then as it progresses there will be nothing left to help improve the quality of life. It is a thin line We walk in dealing with this disease. What is worse? Pushing the med's at first and having nothing to bring relief or some comfort in the years to follow, or delaying some of the med's to give relief for a bit later on?

"Young on set" is generally used to describe cases in which symptoms occur between the age's of 20 and 39. The researchers arbitrarily picked 40, to see if prognosis and response to therapy differs from that of older patients.

overwhelmedinFL, Hi, I'm Al nice to meet you. I have what would be grouped "Young on set" I was diagnosed in 1986 at age 33. (a few months before my 34th b-day). I believe there are a few others here that fall into that category and may post from time to time also. I just added this cause sometimes I'm a wiseguy and didn't want MJF to feel lonely. No offence meant, I couldn't stop my fingers!! Take care, best of luck and hang in there.

By bandido1 On 2009.09.18 17:43
Thanks to my speech recognition software, I have enough strength to finish off today. Annwood & Lohengr1N have provided what I consider to be my views on medications. I am taking Requp now and expect to graduate to Sinemet by year end. Bob C

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