What Do I Ask At The First Appointment With The Neurologist? | myALZteam

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What Do I Ask At The First Appointment With The Neurologist?
A myALZteam Member asked a question 💭

My hubby has not been officially diagnosed but our family doctor says MCI. He is somewhat in denial thinking it's normal for a 75 year old!

Besides all his memory and cognitive issues, his PT (after shoulder surgery) recommended a neurologist for neck and hand tremors.

I'm nervous about what to explain to Dr since my loved one is pretty adamant these things aren't happening.

I told our family Dr either my hubby or I needed anxiety pills. He said I needed to get out more. No way. He gets… read more

posted January 13
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A myALZteam Member

I had a husband in great denial, too. I did something similar to what @A myALZteam Member did:
Two weeks in advance of his appointment, I sent the neurologist a detailed list (more like a grid), with dates and the specific behaviors and events I was seeing. I was detailed, specific and factual. No generalities.

posted January 13
A myALZteam Member

When we see my husband's neurologist I give the nurse a note to give the doctor. I have written down all my concerns and what I am seeing, then the doctor can question my husband about things without me saying my concerns out loud. This works for me.

Our first appointment was a general check over and gathering information and then ordering of blood tests, MRI with a return visit for results. I have to say I did not like the neurologist at first but things are good now. We have been going for 4 years.

My husband has hand tremors but the neurologist feels these are essential tremors as he does not have other signs of Parkinson's.
He is very anxious too, very afraid something may happen to me and overly concerned if he can't see me and I may just be in another room. I do not leave him alone and his sister will come so I can go to an appointment or lunch with a friend (which is not often) but he always says "I don't need a babysitter" but he does. I have not tried to hire anyone to come in yet but there will come a time when I will need to for my own sanity.

Things could be so much worse so I just try to make the best of things.

posted January 13
A myALZteam Member

If your doctor is dismissive about your anxiety, you may need a new doctor. Family doctors are not always the best suited to deal with dementia patients and their caregivers. Some neurologists I understand may fit the bill but generally they focus on diagnosing and medicating. I had a gerontologist who specialized in dementia for my mother and she often spent a full hour with us. I kept doc visits to a minimum and communicating with her through the patient portal and would telephone me when needed. I found her to be down to earth, realistic, and caring. You may want to explore options for medical care.

posted January 23
A myALZteam Member

I definitely recommend a detailed list of things you are seeing and what the PT crew wanted the neurologist to look at.it is so helpful to get this to the physician prior to the appointment date. I am lucky that I can contact the Dr on our clinic portal and it becomes part of the record. The Dr only sees him for a few minutes. I think it is good for you to keep a record with date, time and spicifics. You will see trends show up that you aren’t even aware of. However, the doctor doesn’t want to read a book about your husband. You can list daily symptoms, symptoms worse in evening, things that can precipitate symptoms (for example, lathe groups and noisy areas are not to my husband’s liking and can increase symptoms) and include the occasional things, they are often a warning of what is coming. If your family Dr isn’t in the same clinic as the neurologist, you should ask for any recent test results your husband has had already and notes from your family physician from the last couple visits. You should expect an exam, probably some tests ordered and also a psycho-social exam which takes several hours. There are some other diseases that can cause symptoms similar to early MCI and it is important to rule them out. Not everyone who has MCI will go on to AD, although many will. He might have to have the psycho-social exam in one year to see if things have changed. It is important to get an early diagnosis so appropriate meds to slow the progression can be started or entry into some of the new trials that might be available. Good luck with your appointment.

posted January 14
A myALZteam Member

I agree on getting out and doing more that you like to do. It's very hard taking care of a loved one. I know it is affecting my health, my marriage and my anxiety has been through the roof. I know it affected my job and now trying to find someone or some agency to care for my Dad so I can get a job. People have suggested the Aging agency in your area. Hoping to do that this week and hoping to go to another day care this week. It's extremely hard as an only child and then when family doesn't want to help besides that.
Hugs to you!!!♥️♥️♥️

posted January 14

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