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By TomsDaughter On 2011.01.05 10:27

I am new to this forum; I actually just found it yesterday and am so desperate for support that I signed up right away.
My dad was diagnoised with PD in March 2007, had a brain stimulator put in August 2008. For a time he seemed good. But Spring of last year things seemed to change. He lost a lot of weight very quickly. This brought him down to a healthier weight for him, but the rapid lost was scary. Dr noted it but did not seem to concerned. Also around that time his cognitive ability seemed to change. His mind is not as sharp as it was: he has great difficulty with math and money, he doesn't seem to remember how to do things that he once did routinely on his computer, he starts sentences then forgets what he was saying 2 or 3 words in, it takes many times of repeating to help him understand fairly simple concepts like his dr changing his medication.
This terrifies me. I am trying really hard not to let him see that it bothers me because I don't want him to feel bad, or worry or feel ashamed.
I am trying to find support groups in my area, but it seems hard to find ones that are just for caregivers. Though I am not technically a care giver as I live with my family an hour away.
Does it always happen this quickly? I feel like he is declining so quickly. His mother and her mother had early onset PD, really the only memories I have of my grandmother she is in a nursing home and does not know who any of us are. I am so afraid of my dad becoming like this. I am not ready. I know that I am probably blowing this whole thing out of proportion, but..
I am sorry for dumping all this in the forum.

By karolinakitty On 2011.01.05 11:02
Toms Daughter... Welcome to the forum!
You will find we are very honest, if not sometimes too honest in our opinions and the facts.
1. Did he ever go back for an adjustment on the DBS and why was he given it so early in diagnosis?
2. How old is he?
3. Did they say he has PD or a PD plus disease?

My first reasoning is, that with DBS they can do adjustments and sometimes it helps the patient out. Other times it's when they find it just doesn't work for that Patient.
One of the first things we say about PD, is that every person is different. Both in progression and in symptoms. There are PD diseases and PD plus diseases. These plus diseases are very rarely given as diagnosis' as they are not really looked at hard enough.
Age may or may not be relevant but some of these happenings could be related to the aging process.

My guy has been diagnosed with LBD (Lewy Body Disease), a PD plus disease.Some others here have the same diagnosis.

From your description it is what we went through a year ago. He progressed in the disease so fast there for 6 months, i was truly worried about his prognosis. He lost the weight, his cognitive issues went downhill fast, his movement and so on. I KNOW what you are going through.

Here is the upside for us. At the same time we started seeing a Movement Specialist here in SC at MUSC. Awesome doctor and still wish we could see him full time. He played with my guys meds. He's only on Requip, Aricept and recently added Cymbalta.
He is actually better cognitively and in his movements since these adjustments. His cognitive issues at our last neuro visit were improved, his gait improved he is doing much better.
Now there are sidelines to this as he has been doing brain exercises and more physical activity than he did before. These are some of the pro-active choices we made. That's another reason for asking dads age.
Exercising can mean just a simple walk, maybe twice a day. A hard walk not a stroll in the park, something to use the muscles good. Brain function, my guy plays kids memory games on the computer, when he isn't in the shop trying to trick out a wagon. You know, like the weasel game hitting him on the head, turning cards, finding mystery pieces in a puzzle and given a time limit. Games like those that need to exercise the thinking process.
It takes him a long time to get his thoughts out, think things through, get the right words, he still loses track of time and days, but is so much better than he was a year ago....
I am sure others have more to say but, please, don't panic. Some PWP go through fast progressions due to meds, the disease itself and sometimes other disease like UTI's and such....
Try and get in touch with his doc or whoever is going through the caregiver process in your family and see what they can do.. If he is not seeing a Movement specialist, find him one, they are well worth the journey in my eyes......

By TomsDaughter On 2011.01.06 09:11
Thank you KarolinaKitty for the insight. To answer some of your questions- to the best of my ability- My dad is 57, so around 54 when he was diagnoised, but dr thought he probably had it for a while before he was diagnoised. My grandmother was diagnoised at 42 and think her mother was diagnoised at around the same age.. I have read that many people do not believe in PD being genetic, but I am having a difficult time with that given my family history.
I am not quite sure why they opted to do the surgery so quickly. I know that they tried many different medications but they were not helpful. He was started on- i do not remember the name- but it is supposed to be a really good medication but the body get used to it and it stops working- Does that make any sense. It started with an S I think. Anyway, he had a really good reaction to that, but his neurologist was concerned about putting him on the medication long term so early in his treatment. Also, his tremors were making it extremely hard for him to work.
For about 3 months after the surgery he was going every 2-4 weeks to get adjusted. It was a long process and took lots of trial and error to get the settings right. Now he goes every 6 months. His next appointment is in April.
I have heard no mention of a PD plus diagnosis, but I will do what I can to look into it.
I REALLY appreciate the information that you have given to me. Dad is having a hip replacement surgery on monday. I will start looking into a movement specialist. He has a blood disease that keeps him inside when it is cold, but I am hoping that it will be a warm spring and I can get him outside. And I will see about some kind of brain game.
We went to the dr on Tues. They are doing bloodwork and are adding welbutrin to his medications. He also has a cognitive functioning test scheduled for Feb.
Thank you so much. I have a lot to think about. I really appreciate the information.

By karolinakitty On 2011.01.06 11:09
Ok ... Great.. Now remember i am no doctor or medical professional but here's what it sounds like.

Certain PD plus diseases have no patient response to A-typical PD drugs. They either don't work OR they cause the symptoms to worsen. If the "S" drug you mention was Sinemet, than it is possible he has a PD plus disease. I don't know all his symptoms but 2 come to mind off the top of my head:
MSA (Multiple System Atrophy), and the LBD(Lewy Body Disease)..from the current problems he is having and due to his non-response to DBS, it just might be so. Athough many regular PD patients have no luck with DBS. My guy has very few tremors and the cognitive issues have been top with him...

and Please...remember i am no professional, however the American Parkinson's Disease Association (APDA) puts out a booklet on drugs to avoid with PD and welbutrin is one. It can cause hallucinations, nightmares and various other cognitive issues i don't think your dad needs at this time.....

Also, with any surgery, and any hospital stay, there are going to be issues with his PD. You have to insist they give him his meds on HIS time schedule not theirs. I hope some of those who had issues with that would post here for you, as some had some real problems after surgeries.

One thing about the cognitive testing. Make sure it's cognitive and not intellectual. There is a test known as the WIASIV which they used to give for disability determination here in South Carolina. They now have omitted it from the testing procedures as I blew a gasket and wrote everyone in the country that this test was based on intelligence and not cognitive issues. A person can be intelligent and still have cognitive issues.

If you get time to get into any of the previous posts here, you will see posts on surgeries, hospitals AND the fact that some neurologists are just not all that informed on PD and PD plus diseases. They will give out drugs not connecting the dots and putting patients in precarious positions. Just because a doc says take this... don't just take it... research it, fins all the side effects and options you have before taking it.... One thing I always do if i am not familiar with a drug, i ask here, to see what issues others have had....

If i can be bold as to suggest going to the APDA website. They have free booklets available... My favorite is the drug booklet..... everytime either doc wants to add a drug I check it there before i even do any further research on it. Also i use it here in case people ask about certain drugs..... it's a great little weapon in this fight...
APDA has a lot of books and i sent for like 20 at once when he first got diagnosed.... they are good to have for reference.....

By parkinit On 2011.01.09 13:39
TomsDaughter -

Welcome. My husband had DBS as well. I hear great things and we both agree we would have done it again - even given what we know now. What people need to remember is that DBS DOES NOT STOP PROGRESSION of the disease, but takes the place of the pills used to treat DBS. In the past five years, I have heard that doctors are taking a different approach to the DBS in that they are prescribing it sooner rather than later - as was my spouse's case. He had progressed to taking pills every 1:45 to 2 hours. The DBS took us back to taking pills every 4-5 hours - for about a year. Now, after about 2 years, we are taking pills every 3 hours. Still an improvement.

Every PD person is different - some progress very slowly, others quite quickly and some seem to come and go in progression in spurts.

Sinemet is the pill prescribed for PD. Its generic name is carbidopa/levoopa. You will hear these two used interchangeably.

I commend you for your search and for caring and supporting your dad. You don't mention a mother or other siblings, but the PD patient does need lots of love and care - even when their face (or the "mask" it becomes as the disease progresses) does not show their delight and the words are never expressed to tell you they appreciate you . . . they do. :)

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