New here and need to talk to others

jackiputnam

Hello. My name is Jacki and I am 68, diagnosed with moderate cognitive impairment that is not Alzheimer’s. Right now I’m having a heck of a time trying to convince my insurance to let me go to a huge brain and memory center run by the Universty of Washington. We have one neurologist in town who is doing a lot with Alzheimer’s, both treatments and clinical studies. But only for Alzheimer’s, not for other dementias. I am the 3rd generation to have a dementia which was never given a name. They all started in their late 60’s and developed horrible personality changes. So I’d really like to know if my family has frontotemporal Dementia running through it.

What’s caused me to write today is a dire need to reach out. I feel like no one in the medical community thinks I’m a priority. My insurance sure doesn’t give a damn and trying to navigate this appeal process is more than I can handle. My son and daughter are also helping me but I’m not used to turning over the phone when the drs office calls. So I try to field calls myself and screw them up.

Also I realized today, after talking with the vet, that my dog is supposed to be taking pain pills twice a day. I did it fine for the first couple of days but then it just dropped out of my mind. I’m not sure how many days I haven’t been giving it to her. Just things are adding up and I’m so frustrated. I feel lost .

James Middleton

Hi Jacki. James here and 68 also. I was diagnosed with vascular dementia about six months back, but it's been going on a lot longer than that. I was just a good actor and good at covering for myself. It took a step up recently and I'm no longer able to cover as well. I forget lots of stuff but nothing important yet. The insurance companies can be a real hassle. Sometimes I don't find out the meds need a pre authorization until i'm almost out. That's a pain. Sounds like you're having your own hassle. I'm sure you will prevail with a bit of determination and skill. Let your son and daughter help if they are willing. It will make them feel better about it maybe? The whole medical/insurance thing is like a nest of snakes. I do wish you the best and am here to write back or answer any question that I can. I have good days and bad days. Much success to you😁

Iris L.

Welcome to our online support group, Jacki. Please keep us updated on uoyr request for referral to a brain and memory center. You do need answers, and quickly!

I keep a calendar, also post notes to help myself remember. I don't have Alzheimer's Disease, but have a dx of cognitive impairment not otherwise specified, meaning coming from other diseases.

Iris

jackiputnam

https://alzconnected.org/discussion/comment/215393#Comment_215393

Thank you, James. I thought I perhaps had vascular dementia due to all the hyperintensities (?) shown on MRI. I’ve gotten confusing information about whether or not they are involved with my problem. Who knows if the information was confusing or I was just confused. 🤷‍♀️

Anyway, I appreciate your response. It feels better to know I’m not alone!

jackiputnam

Iris, I did dig out the post it notes but then forgot to use them! I’ll give it another try. I use my phone timer, alarms and reminder apps a lot.

I’m working on the insurance appeal today. Oddly, my first referral went though but it was addressed to the epilepsy unit instead of the memory care department. When my drs office resent the request for the corrected department that’s when they denied it. 🙄. In addition, the neurologist that does all the Alzheimer’s work here in town wants me to get a blood test before he writes a letter of support. I think it tests for protein or plaques or something?? Of course I can’t remember. I need to pay for it out of pocket but I’m willing.

Thank you for your response and I look forward to getting familiar with everyone here.

Iris L.

Hello Jacki. There are a great deal of challenges in living with dementia and cognitive impairment. It is great to have some help for the really difficult areas. Then one can focus on living and quality of life.

What type of letter of support are you expecting from the neurologist?

Iris

jackiputnam

https://alzconnected.org/discussion/comment/215519#Comment_215519

Im hoping for a letter that says he has done all he can for me and there is no comparable service in spokane for my neuropsych testing. The only place available here in town that takes my insurance is mainly a practice that does testing for adhd and autism. I really want to go to a dementia specialist.

I had a bit of a breakdown this morning. Ended up calling the 24/7 Alzheimer’s help line. Very nice person answered my call and promised one of the therapists would call me back within an hour which she did. We talked and I was able to tell her all the things that were freaking me out which really helped. She gave me some ideas that I hadn’t considered before. And is sending me an action plan so I don’t forget.

I also found out the blood test I will be taking is looking for plaque. Anyone else had this test? I would love to hear your experiences with results…or lack of.

My youngest son came over and is taking me out to a movie and lunch. I need to get out and about.

marionwilhelm

https://alzconnected.org/discussion/69827/new-here-and-need-to-talk-to-others

Hello, Jack, I'm 70 with MCI. I use my Apple watch/I pad to keep up with my “things” whatever they are. Dogs pills, my hair cut, etc. It reminds me & DH helps. I sure hear you on the frustration & being overwhelmed. Not know what's ahead is frustrating.

marionwilhelm

https://alzconnected.org/discussion/comment/215576#Comment_215576

sorry I left the “i” off your name.

jackiputnam

https://alzconnected.org/discussion/comment/215577#Comment_215577

I didnt even notice. LOL. Thank you for your response. I also have an apple watch which I like because I can just get siri to make a reminder or set a timer. It's so hot outside here that I have to set a 5 minute timer when I put the dogs out so I won't leave them out to get heat stroke. I think I can remember something for 5 minutes but I cannot. The instant I walk away it's gone. Frustrating.

I got my blood drawn for the test that looks for the tau protein. I think my neurologist wants to do this one last thing for me before writing a statement to support my insurance appeal. The young woman who did the blood draw was SO kind and listened to my story completely. She told me she would document everything I said so Dr. Greely would know what I wanted. I guess the results will be informative even though the presence of the protein doesn't necessary mean Alzheimers and the absence of the protein confirms that I don't have Alzheimers and need further work up. It felt great to have a medical person really want to help me!

Indigal

Jacki, I am glad you were about to get the blood test. I am also the 3rd generation to have none specified cognitive issues. After 2 years of seeking a diagnosis, I finally got into a memory clinic this spring and received a diagnosis of Non-amnestic Mild Cognitive Impairment. I suspect I may have Frontotemperal Dementia but the PET scan I had was "mostly normal". I had to work to get into the memory clinic and gather all of the records they wanted. I make lists on my phone to keep track of things. Maybe make a list of all of the steps you need to do to get the Memory clinic appointment and check them off as you do them.

The Memory Clinic appointment was a bit of a disappointment. The doctor said she couldn't give me a diagnosis. However, when I looked at the notes in the electronic medical records, it said I meet the criteria for non-amnestic MCI. She recommended testing for Alzheimer genes and FTD genes but I didn't have that done.

Yes, it is hard to have others handle personal things. Maybe think of your children as your "personal assistants" that are handling the insurance stuff and reporting to you.

jackiputnam

Thank you for your kind response. Were they able to rule out AD? I'm like you, afraid we have FTD in the family. It gets so ugly. I'm sorry to hear the visit was disappointing, I'll feel the same if I can't get some kind of answer; I'm putting a lot of eggs in this one basket. Did you have neuropsychological testing?

I got my blood drawn for the protein/plaque test and hope to have a result by Tuesday. I think that's the last thing the neurologist here can do for me. I'm slowing gathering the things I need for the appeal to my insurance. Thanks for the comment about my kids…I will definitely try to make that mental shift. LOL

Glad to meet you!

Jacki

Indigal

Jacki,
I hope you got your result back from the blood test and can get into the Memory Clinic. There seems to be a lack of knowledge about FTD except at major medical centers. The neurologist I went to did say it was possible I have FTD and ordered a FDG PET scan. I was hoping it would explain the atrophy on my MRI but didn't. I understand the frustration of not having answers.

No, they were not able to rule out AD. Due to my language issues, I suspect I either have Primary Progressive Aphasia (which falls under FTD) or a rare variant of AD where language is affected first. The atrophy on my MRI is in the language area. Yes, I did have neurocognitive testing which resulted in a referral to a Speech Therapist and an aphasia diagnosis.

Good luck with the insurance. That is one battle I have not had to deal with. In my case the insurance doesn't cover anything until we hit our high deductible. So, the insurance doesn't deny any tests, I just have high bills for things like PET scans.

In addition to the Alzheimer Association, another good source of information is The Association for Frototemporal Degeneration (AFTD). They have a newsletter and webinars on topics like genetic testing which may be of interest to you. There is a FTD Support Forum which has discussion on a number of topics. Most of the people on there are caregivers but some have FTD and everyone is very supportive.

www.ftdsupportforum.com

Erin

jackiputnam

Thanks so much, Erin! I was told I would get the blood test results by email but evidently I have to go in to see the doctor for him to give me the test results. I have no idea if that means it’s positive and he has to tell me or it’s negative and he has to explain that they don’t know anything. Lol, of course I can’t get in there until September to even get the results so I am just moving on with my appeal without the results of that blood test. At least the office gave me a number to join the patient portal so that I can write a request straight to the neurologist, and lay out all the things that I want him to say in the statement that, along with my primary care doctors statement, should help to get the referral.

I hope.

Jacki

allit

Jacki, I can relate to your frustration with insurance and the medical community. I think it's cruel that they are making you wait until September to get the results of a blood test!

My wife saw a neurologist in January and had an order placed for a lumbar puncture to evaluate spinal fluid for the amyloid ratio and the tau ratio. Those values are supposed to correspond to what would be found on a PET scan. So that was in January, she didn't get the lumbar puncture until the end of April. Luckily the neurologist called her a couple of weeks later in May to discuss the results and which are also in her electronic medical record. But, when the neuro office submitted their request for my wife to start lecanemab, the insurance company said they wanted a PET scan and didn't accept the results from the lumbar puncture! And the appointment for the PET scan is in August. And we still don't know if the insurance will cover the lecanemab even if the PET scan shows amyloid abnormality. When time counts as it does now while my wife is considered in the early stage, then all of these delays seem like malpractice to me.

Indigal

https://alzconnected.org/discussion/comment/217219#Comment_217219

Jacki,
Once you join the patient portal, you might be able to view the results of the blood test online. I get all of my lab results that way before seeing the doctor. Whether or not you can depends on the doctor's orders. Sometimes doctors hold the results until they have discussed them with you. I am a retired pharmacist but don't always understand what some of the results mean without an explanation from the doctor.

Keep plugging away at the appeal. It took me over a year of seeing a neurologist before he would order the PET scan I wanted, despite an MRI that showed atrophy and significant impairment in some areas on my neurocognitive testing. It then took another 6 months to get into the memory clinic after having the PET scan. None of this stuff happens quickly. It requires a lot of perseverance.

Erin

autumnlorayne

Hi Jacki, my mom has MCI and lives in Spokane. I'm here right now visiting her. I'm trying to get her connected with some kind of support group but I haven't found anything in person in town, only for caregivers. Hoping to get her to sign up to this website and make some connections. Thanks for sharing about your experiences.

jackiputnam

https://alzconnected.org/discussion/comment/217276#Comment_217276

I’ve been out off the board for a while (since July obviously 🙄) but wondering how you and your wife are doing? Any progress???

allit

https://alzconnected.org/discussion/comment/223613#Comment_223613

hi, thanks for asking. Her PET scan was positive for amyloid plaque and so the insurance company approved the Leqembi. Her first infusion will be October 4.

How have things been for you? Making any progress with the docs and insurance?

And how is your pup doing?

Watson1

https://alzconnected.org/discussion/69827/new-here-and-need-to-talk-to-others

Jacki i live in vermont and my doctor suggested i go to our memory clinic. did so have alzheimers. I'm 70 on Medicaid so it was just billed said and done. of course this may no apply to your situation but the memory clinic was absolutely fantastic because they operate as a team working with you. I'm fore ever grateful for the staff in bennington vt