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Elaine Martha
Posted: Saturday, February 21, 2015 12:34 AM
Joined: 2/21/2015
Posts: 2


Hello, not diagnosed. Lots of memory issues, getting lost during very simple car trips, losing my words, forgetting how to send an email. It's coming along quickly.

I would really appreciate someone to talk to. I got lost yesterday and have not gone outside since, I am worried, have been in denial too. Lots of crying. I live alone, no partner.

It is clear that there is a problem. I went to have a shower and had a vague idea that I might have already had one. The bath towel was wet, so was the shower, the shower head dripping. Then I realised that my hair was a little wet.

Everyone I talk to says I'm fine, nothing to worry about, but I know there is a problem, I know it!

Seeing doctor next week. (I just took a deep breath then)

Elaine

llee08032
Posted: Saturday, February 21, 2015 7:51 AM
Joined: 5/20/2014
Posts: 4408


Welcome Elaine. You have come to the right place. I too came pre-diagnosis and learned from the wonderful and kind members here on the patient board what steps to take to get diagnosis and find out what was causing cognitive decline and memory loss. It is no surprise that everyone you talk to say's your fine. They will not understand. The more experienced members will jump in with more in depth information that you will need. In the meantime:

a. Start keeping a log of all your symptoms
b. get an appointment with a neurologist
c. follow through with all recommended test to rule out other illnesses or causes (blood work, MRI, Sleep study, neuro-psychological evaluation etc.)
d. prepare yourself for what can be a long process in getting diagnosed
e. ask questions here and read everything you can
f. call the Alzheimer's Association 1800 number (I can't find it) if you feel overwhelmed
g. get a GPS if you don't have one. Keep trips short and local. Plan ahead with both mapquest and GPS when traveling to someplace unfamiliar. Plan ahead when traveling to several destinations. Don't panic when you get lost. Don't make any sudden stops, turns, shifting lanes etc. Take a driving safety course.
h. focus on the positive
i. focus on staying safe
j. learn about accommodations to help you remember things (writing things down, ques etc.)
k. keep coming back to the board here
l. learn how to keep stress level to minimum

I see two positives already, Elaine. One that you came here for support and two, you have awareness that something is wrong. I'm sorry that you are having memory/cognitive problems but glad that you found your way here.




Iris L.
Posted: Saturday, February 21, 2015 1:26 PM
Joined: 12/15/2011
Posts: 18342


Welcome to our online support group, Elaine. You have come to the right place to learn what you have to do and to receive the necessary support.

No, the people around you, and even doctors, are unfamiliar about the evaluation of memory loss. In fact, they are CLUELESS. That is why it is so important to learn from the people who do know, which are those associated with the Alzheimer's Association. I had to seek out my own neurologist. The PCPs were not interested. Even the neurologist was not that interested at first. I happened to attend a seminar given by an Alzheimer's Association educator, and told her my story. She urged me to return to the neurologist and insist that he take me seriously.

Ilee gave you excellent advice. Ilee, your brain is still working very well in an organized manner.

Elaine, the important thing to remember is, do not panic. As Ilee says, the evaluation process is a process, and may take a while. The diagnosis of Alzheimer's disease or the other dementias is made after other possible causes of memory loss have been ruled out. And there are many other possible causes of memory loss. You did not state your age, but hormonal changes due to menopause, low thyroid, low vitamin B12 and other medical diseases impact memory. Drugs, both prescription and non-prescription, can impact memory. Review all of these issues with your doctor and online.

Review all of the advice Ilee gave. Stay strong. Pay attention to your symptoms, and write them down. Read the diagnosis section on alz.org.

My suggestion is to avoid talking about your concerns with people you know. They will not be supportive. They just do not know enough.

As far as doctors, primary care doctors may or not be supportive. The PCP can being the medical evauation by obtaining your history, expecially a history of old head trauma, do a physical examination, and perform laboratory studies and order and MRI.

A neurologist will order neurcognitive tests, which are about 6 hours long, and performed by a neuropsychologist. An in-office mini mental status exam (MMSE) is not sufficient. The neurologist will also order any other test he or she deems necessary.

It is important to check for sleep apnea, which involves an overnight sleep study in a sleep lab, because sleep apnea impacts cognition. Sleep apnea can be without other symptoms besides symptoms of fatigue and memory loss.

It is important to consult a neurologist who regularly diagnoses and treats the dementias, because this is such a specialized area. It is so important to have the correct diagnosis, because your entire life depends upon the results.

If you cannot locate a neurologist, the Alzheimer's Association can help you locate one in your area. You might consult at an Alzheimer's Disease Research Center, or a memory clinic.

Please post back if you have more questions. Please tell us your age and let us know if you are still working. Please keep us updated on your progress.

Iris L.


nomemo
Posted: Saturday, February 21, 2015 10:35 PM
Joined: 3/21/2012
Posts: 439


i agree with the advice given. and may i add one more thing......listen to your body. you know it more than anyone else ever could. others have said to me, "oh, that happens to me, too" or "you're just stressed", or "it's memory overload". which, at times, it was. but when i began not recognizing simple items, like, buttons, or forks, or if i did, i didn't know what to do with them....well, i at least knew enough to know that i needed to see someone. and i did.

if you have a gut feeling that something's going on, then see a dr,, preferably someone who specializes in dementias, and get it checked out. the best thing that could happen is that nothing is wrong, or if there is, it's reversible.

Prayers for encouragement, support, calmness and medical wisdom, should you choose to go that route.

Blessings.

Elaine Martha
Posted: Sunday, February 22, 2015 2:48 AM
Joined: 2/21/2015
Posts: 2


Hello Ilee, Iris and nomemo,
Thank you all for responding, your replies have been a great comfort. It is good to be in touch with people who 'get it'.

I saw my son today, he's turning 27 shortly and we have a fantastic relationship. I told him a little of what was going on and he confirmed there have been just a couple of things he has noticed that struck him as odd that I did not remember, and both those things were very recent, but things he says I definitely should have remembered.

I am 54 and at the end of menopause which has been pretty uneventful, apart from hot flushes from time to time. I am a very upbeat, happy, easy going person and recently have been on an emotional roller coaster. Apart from memory issues, I occasionally feel like I could fall over. The most difficult so far is getting totally lost in the car in short simple trips in an area I have lived in for 28 years. On Friday I turned the car off and was sobbing hysterically until a workman tapped on the window and asked if he could help. I am wondering if this is the beginning of a journey I was not expecting. There is nothing in our family, all my family have passed with the exception of my sister who is ten years older than me and is totally fine. I live alone and I think that can be a blessing (privacy) but bad if I get scared or do something stupid like leave the oven on. I know there is a problem, but I am almost in denial at the same time, if that makes any sense.

It is great to hear from you all, it has certainly taken away the solitary feeling I have had about this.

Love to you all,

Elaine

Iris L.
Posted: Sunday, February 22, 2015 3:01 AM
Joined: 12/15/2011
Posts: 18342


Hello, Elaine. We all know the feeling of not being sure if what we are noticing is really happening. But the best thing to do is to check things out. It most likely is something treatable. At the same time, you want to be sure to be prepared for a different result from the testing.

Do not delay. If it is Alzheimer's disease, early treatment can help improve your functioning and stabilize you. It is better to know, and take the necessary steps, than not to know, and have things get worse.

Your son sound like he might be a good care advocate for you.

Iris L.

llee08032
Posted: Sunday, February 22, 2015 9:49 AM
Joined: 5/20/2014
Posts: 4408


I know there is a problem, but I am almost in denial at the same time, if that makes any sense.

Elaine, what you described above is a most natural and normal response. If you are worried about forgetting to turn the oven off do get a timer to remind yourself. This is part of what we call accommodations for helping us remember. Accommodations are very important when it comes to issues involving safety especially for those of us living alone. Be very careful with balance if you feel like your going to fall. I have this problem and move slowly and carefully and practice what is called "mindfulness" when walking and using the steps. It is like staying in the moment and focusing wholly on your movement. I still misstep at times and must appear like I am drunk sometimes. Wear good shoes with traction also.

Getting lost when traveling familiar roads is very scary and upsetting initially. Sometimes it is good to pull over to a safe place to get your bearings and figure out how to reroute. Practicing mindfulness when driving is also important and preparing ahead is key. I no longer get panicked when I get lost which decreases the likelihood that I will make any sudden moves that could cause an accident. When I go a long distance (get really lost) out of my way I don't know that I could manage w/o GPS.

There is a plethora of information about mindfulness practices on the internet which I will try to post later.

Also know that any input from your son will be valuable information for the neurologist. Write his input down also or even take him to your appointment if he can go.

Be safe, be well, be courageous, and be careful!

llee08032
Posted: Sunday, February 22, 2015 9:55 AM
Joined: 5/20/2014
Posts: 4408


Benefits of Mindfulness: Practices for Improving Emotional ...

www.helpguide.org/harvard/benefits-of-mindfulness.htm

llee08032
Posted: Sunday, February 22, 2015 10:02 AM
Joined: 5/20/2014
Posts: 4408


Ilee gave you excellent advice. Ilee, your brain is still working very well in an organized manner.

Iris, I actually surprised my self! I think I really connected to how Elaine is feeling at this point. Perhaps more emotionally than intellectually. Also you have all done a great job in learning me. You were the one who stepped in with the idea of "accommodations." Thank you!

Shar 123
Posted: Monday, February 23, 2015 7:28 AM
Joined: 2/22/2015
Posts: 10


Hi Elaine, I'm new here too, but I'm NOT the one with symptoms, it's my husband who is 51. I just joined yesterday.
I am so sorry for what you are dealing with. Reading your story stirs compassion in me, something I'm lacking with hubby. Thank you and keep sharing, not just for me but for you too. I am already receiving some great advice, as we are really early in the journey. I'm also receiving hope. Like Iris said, maybe we can reverse it, or at least arrest it.
If you haven't already, bookmark the website of this board so you can find your way back. I must have spent 30 minutes yesterday trying to find this page once I had registered.
Hugs, Shar.


Jo C.
Posted: Monday, February 23, 2015 9:32 AM
Joined: 12/9/2011
Posts: 13462


Hello Elaine Martha and a very warm welcome to you. I am truly sorry for what is happening and can only imagine the stress and worry this is bringing to you. I am glad you are going to see the doctor soon.

Very first thing; there are MANY different conditions that can mimic dementia. Really. So, the first thing that would be helpful would be for you to see your primary care doctor; hopefully he/she is in Internal Medicine. It appears you are doing this; good for you, that is very proactive.

Inform the doctor of your various issues that have been occurring and then INSIST on a full exam along with a blood draw that will check every single body system and then some. Do not let the doctor minimize or disregard your situation. INSIST.

You will want to have that full Chem Panel; CBC; Thyroid testing with T3, T4 and TSH; you will want to have your B12 levels checked as well as hormone levels and everything and anything else the doctor can think of. Bring in all meds that you take routinely so the doctor can assess them too. Inform the doctor of ALL over the counter meds you take as well as herbs or other items.

Once those labs are returned, it may be determined whether or not your symptoms are being caused by one of the various other conditions looked at by the labs that can be easily addressed and treated.

If the labs are not remarkable for another condition; then it is time to get to a very good Neurologist who sees dementia patients as a routine part of his/her practice. Again, explain all of the symptoms you have been having and bring a copy of your lab results and meds with you.

Ask the Neurologist to do a FULL assessment exam AND full testing. Some testing will be oral, some written. An MRI would be warranted as you are young, and this is pretty much a "new" onset. This would also rule out Normal Pressure Hydrocephalus and other medical conditions. If the end result is, that the Neurologist feels the symptoms are secondary to an Early Onset of Dementia; then specifically request that Neuro carefully assess quite accurately just which type of dementia do you have. There are multiple different kinds of dementia and medication for one can be contraindicated for another.

Also: There are specialist attorneys that help to put one's planning in order. These are, Elder Law Attorneys. Even though you are not elderly, this is the specialty that has the knowledge to do a good job of planning IF it turns out you have dementia or other chronic health problem. You can find such a specialist in your zip code area by going to, www.naela.org This is the elder law professional association. You can also look online and in the phone directory.

You will want to decide who would be the best person to manage your health care if you are not able to do so and also who would be the best person to manage your finances if you were not able to do so. These are called; Durable Power of Attorney for Healthcare and Durable Power of Attorney for Finance.

One other thing that ALL of us need to do whether we have dementia or not; and that is, to make a HIPAA Waiver. HIPAA is a very strict federal confidentiality law. In this law, it sets forth that NO healthcare provider; doctors, nurses, other providers and even business offices, etc. can speak to anyone about you or divulge any information about you. This becomes an issue if one is not conscious or becomes disabled in some way.

If one has a HIPAA Waiver, that "waives" the confidentiality law for those people whose names you list in the waiver.

All of this of course are part of the technical aspects of what you are dealing with. The emotional side is another thing altogether. We will be here for you, so please feel free to come here and talk as often as you wish.

Also, it would be good to have a person or several in your life that you can freely share with and speak to and to begin to make part of your support team. Support teams can be extremely helpful. Friends, family, neighbors, church associates, etc., as well as your Healthcare team.

There is a Helpline at the Alzheimer's Association. It can be reached at, (800) 272-3900. If you call, please ask to speak to a, Care Consultant. Consultants are highly educated Social Workers who specialize in dementia and all that entails. They can be very helpful, supportive, and also may have listings of support groups and other entities that can be helpful. There is no fee for this service.

We will be thinking of you and waiting to hear how your doctor's appointment went and hoping for the best.

With my very best wishes,

J.