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By rmshea On 2010.06.02 20:49
As per all your good guidance, I have made an appt with a movement disorder specialist and will be taking MIL on June 10th. This is a clinic associated with the university here in town. I'm sure the new patient packet will have all sorts of paperwork. But I was wondering if there is anything more I should be prepared with besides a list of questions. Also, my MIL is sleeping a lot; I called her at almost 10 am and although awake, she was not up yet. From what I am reading here on the forum, fatigue is huge. Thanks again..I read as much of your posts as I can and my prayers go out to all of you who are sharing so openly. I have learned more in the past week than in 2 yrs. of going to her neurologist, who is about to be fired a la Trump.

By karolinakitty On 2010.06.03 06:34
One thing i did do for our first appointment, and every appointment, i keep an updated "List of Symptoms". I print it out and give it to doc at the onset of every appointment. As things come up i add them to the list, or delete them if it is med related and goes away. This helps me and the doc. Number one it keeps all the docs involved in what's going on. We have the PCP, the neuro and movement doc or neuro specialist, if each one is aware of ALL symptoms, then it gives them a better view as to what is really going on. I also have a list of questions/comments. If i have moved times of day or adjusted things i add that on there also.
When we had our first movement visit we were there about 3 hours. It was long for him but great in the long run as they covered everything you could thing of. I liked that they took so much time to find out what's working and what's not working. He told me unless there are major changes the next one wouldn't be as long and we would only see the intern, with the main doc only coming in at the end for a few minutes. i still like that idea. It gives the intern a chance to really get into his specialty and give him a better understanding, i would hope, that all patients are different.

By Emma On 2010.06.03 09:46
I too keep a symptom log of everything, not just PD symptoms. It's very helpful when going to all of the doctor appointments. I have a notebook too with a section for each of our doctors and I make notes every time we have an appointment; what the doctor said, changes in meds, blood pressure, everything. It gets to the point where you can't keep track or remember it all unless you write it down. It's been useful many times when we go to a doctor and they want to know when his last xray was or when he started some medication or what another doctor said. The other thing I do is keep a document on the computer for each of us with our name, DOB, address, telephone number, contact people and phone numbers, including the name of our power of attorney, insurance name and number and our doctors names, specialties and phone numbers. I list allergies and dates of surgeries and medical procefures (like MRI's). Then I have all of his medications, dosages and times per day listed. Because it's on the computer I can update it as needed. Initially I just did this for my husband but it's been such a good thing that I did one for myself too. I keep a copy of these documents (they're each just one page) on our refrigerator so in case we need an ambulance I won't have to search for information, one in the car (in case of an accident or when we're out of town) and take a copy to every doctor appointment or hospital visit. When they have you fill out forms you can often just hand them the document instead, it's especially helpful for the meds. I can't tell you how often the nurse has looked at that list and said "I wish everyone would do this". It took a while to get it typed up the first time but it's a snap to keep up with now and it has come in very handy on many occasions. If your MIL has a power of attorney for medical I would make copies of that as well and give it to each of her doctors and file it at your local hospital. Now that I've written this I realize that I haven't answered your question but I hope that some of this information is helpful to you. Just go to the appointment armed with questions and information about anything and everything you have noticed, the movement disorder specialist will want to know anything you can tell him/her. They will have a lot of questions for you too. Good luck!

By rmshea On 2010.06.03 10:45
Thank you folks. I have pieces and parts of things you suggested...will get a notebook and start a file on my computer. MIL doesn't want to tell the docs much at all; then I look at her and she 'fesses up'. I've been meaning to get better organized so will use this opportunity to do so. I lost my job last year and had my own health issues; it seems this is going to be my job. There are times when resentment at having to do this essentially alone builds up; my own mother lives so far away and has dementia and my dad could use my help. MIL has always been immature and selfish in so many ways and expects me to 'entertain' her...I stopped that years ago after getting migraines trying to 'fix' her general unhappiness. I rely on my faith in God to give me the proper attitude when with her, but it is not easy. And I am not a 'nurse' by nature anyway...Bless you all.


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