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New to ALZ Connected- Mom Diagnosed w/Early Onset last year-Question re: Drugs and Doctors
Tricia34
Posted: Friday, December 26, 2014 11:41 PM
Joined: 4/25/2014
Posts: 1


Hello, 

My mom was diagnosed w/early onset Alzheimer's early in 2013 at the age of 61, though looking back we think she may have had symptoms for a few years before. She's also been a diabetic since she was pregnant with me (37 years ago), which from what I can tell, seems to mean she is not eligible for any clinical trials I've found. I know she's on Namenda RX and I think Viacog, (sp) -which  is a homeopathic medication I believe... but I haven't heard any mention of Exelon- or that family of drugs. She's seen a Neurologist, but only last year when she was diagnosed, since then, she's just been seeing her regular primary care physician. Is there a benefit to seeing a Neurologist or someone other than her PCP regularly? I live 3 1/2 hours from my parents and see them at least once a month, and can't help but feeling I don't know if I'm doing enough or everything I can. I don't want my dad to feel worse because I wonder if we can do more (he's already struggling enough understandably to deal with these changes.) Christmas just makes the memory loss/struggles more obvious because organizing and remembering details (especially- who you wrapped/bought presents for, where/when we're going to dinner, how to play any games... etc...) seem to be very difficult things...

I don't want to push them too much, but if there's more we can do, I want to make sure we are...  I raised money for the Alzheimer's association this fall for the Marine Corps marathon, because I hoped to get better connected to this network and get more information, but still feel at a loss and somehow, this is the first time I'm signing on here. Any advice specifically around seeking further medical assistance for my mom in form of medication and/or care would be appreciated.Thank you,


Tricia


alz+
Posted: Sunday, December 28, 2014 2:46 AM
Joined: 9/12/2013
Posts: 3560


Hello Tricia!

 

People will reply soon who use pharmaceuticals and get benefit from them and explain how they use neurologists vs PCP.

 

I am extremely sensitive to most Pharma drugs so my view on this is considered "alternative" here.

 

First, a daughter who cares is best medicine in world. Thanks a lot on behalf of your parents for visiting and learning!

 

I used Aricept for a few months but felt "wired up" and developed large brown plaques on my skin - which doctors told me was "old age" - I knew it was a side effect of the pill and quit it and the plaques went away and the wired feeling. Namenda sent me into rages. We quit at that point.

 

I live where a neurologist is hard to get to, hours away. Went to an Alz Internist and it was too far for too little help. I am seeing my local PCP again and it is good enough for us.

 

The health care system is confusing enough for anyone, when you get dementia it is all the more difficult unless you live near some terrific center, which some do.

 

People on these boards have used the dementia drugs for years and believe they are helping, yet the manufacturers do not claim they work for more than 6 months, 12 tops, and only delay some symptoms.

 

Number one treatment for ALZ is a proper living environment. This means a simplified home over the next year, a good place to sleep, friendly people, prevention of over stimulation (which can cause anger), a place to exercise (going for walks, swimming, anything the person enjoys) and a reasonable diet.

 

The loss of cognitive abilities causes a lot of anxiety in MOST patients and I personally feel anxiety should be attended to always and foremost. When I was diagnosed I had a 10 years relationship with a psychiatrist who helped me with prescribing proper medications FOR ME. I take a "mini" dose of Zoloft and use Medical Marijuana. I have also used Ativan for years as needed, never built a tolerance or became addicted and use smallest dose possible to prevent feeling drugged.

 

These are the basics of care - learning about the illness from the patient's point of view (book Learning To Speak Alzheimer's a great starter) will help.

 

For some people ALZ is not awful. I helped care for my Dad as he went through this and we did not have the terrors you might find on caregiver's boards here. His end was peaceful, the result of a fall at home, a broken hip, a post op infection. We avoided medications when ever possible since at some point the person can not tell you if they are having a bad reaction. Massages for your Mom and Dad might be a nice regular help. Aromatherapy helps with focus and agitation (look for many posts on this here). Lemon Balm capsules work for me, HOPS also help with sleep. I sill wake at 2am and just read or listen to radio and then go back to sleep - I have my own room so I do not disturb my husband's sleep.

 

Over next year you will have perspective by leaving and coming back. Look for help from people who have some experience and use those who make your Mom feel relaxed.

 

Watch for odd and sudden changes in behavior, give lots of love, allow her freedom as much as possible. The message boards here can be really helpful. You do have to invent your own path for her as each person is different and reacts/responds differently.

 

love and courage

 

 


nomemo
Posted: Sunday, December 28, 2014 10:19 AM
Joined: 3/21/2012
Posts: 439


Hello Tricia34......I do not have Alzheimer's, but was formally diagnosed in 2009 with behavioral variant frontotemporal degeneration (bvFTD) at age 54 years.  Although I live in a small town, I do have the benefit of seeing my neurologist, neuropsychiatrist, PCP, cognitive/speech therapist and personal therapist on a regular basis.  All of these professionals work together as a team to provide my care and consult with each other re: behavioral/medical changes as well as change in medication.  I know this is rare, so I am grateful.

 

It is my personal belief that seeing a neurologist, even every 6 months, is a benefit.  It was during one of these frequent visits that motor apraxia was diagnosed and he ordered occupational therapy.

 

I am on Namenda and Aricept as well as on Trileptal.  The Trileptal helps to manage the moods and behaviors that accompany bvFTD, as well as the excruciating headaches.  I started the Trileptal in early summer 2014 and right now the neuropsychiatrist and I are still trying to find the correct dosage to use as the therapeutic dosage. I see him at least every 3 months or more often if needed.

 

I see the speech/cognitive therapist at least twice a month (sometimes more) to work on my verbal apraxia and aphasia as well as compensatory strategies to use at home and in the community. 

 

And seeing my personal therapist at least twice a month (more if needed) is so helpful in dealing with the stressors that come along with bvFTD.  She has extensive experience working with people with brain injury, etc. 

 

Everyone is different, but this is the path that, so far, I am choosing in dealing with my FTD.  Sometimes I throw my hands up and say, "what's the use?".....but then go on.

 

My best to you as you find the path that is comfortable for you.


Myriam
Posted: Monday, December 29, 2014 8:15 PM
Joined: 12/6/2011
Posts: 3326


Hi, Tricia. I was diagnosed at the age of 62 (5 years ago), though I recognized my first symptoms a year earlier. Doctors just wouldn't believe what I was telling them. You received good advice, but I would add that your mother should follow Best Practices. I believe it's what has kept me in the Early Stage:

-Eating a Mediterranean Diet

-Strenuous Exercise (breaking a sweat)

-Staying Socially Active

-Taking Memory Medications as Directed (Most of us are in a combination of the Exelon Patch or Aricept and Namenda or Memantine.)

 

See if you can find a support group for your father and one for your mother. Call (800) 272-3900, which is the Alzheimer's Association Hotline available 24/7. They can provide you with very helpful information and answer your and your father's/mother's questions.

 

Blessings to you and your parents.