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Is it worth it to get more diagnostic tests for FTD?
Annke
Posted: Thursday, August 30, 2012 1:59 PM
Joined: 8/26/2012
Posts: 6


Hello,

My name is Ann, I am new to the forum after my husband was diagnosed with FTD by Neuropsychologist 2 weeks ago.  The MRI is neg.  The Neurologist is not pushing for other tests at this point. 

We have 2 four year olds.  I want to know if we should be doing things on bucket lists now and if I should be planning on raising these kids on my own.  We have an appt with UCSF in Dec.  But, I don't know if I can wait that long.

If there is no actual treatment for FTD, is there any point to trying to get in with any other specialty clinics around?  Any advice is appreciated.

Ann


dayn2nite
Posted: Thursday, August 30, 2012 3:53 PM
Joined: 12/18/2011
Posts: 3097


Until someone comes along who can help with answers, the next best thing would be to check out the Association for Frontotemporal Degeneration online.  There is an FAQ at this link that may answer your question as far as length of the disease:

 

http://www.theaftd.org/newly-diagnosed/faq 

 

You may find other answers there too, I just wanted to offer an alternative until someone comes who knows FTD well. 


nomemo
Posted: Thursday, August 30, 2012 8:11 PM
Joined: 3/21/2012
Posts: 439


i am 57 years old, formally diagosed with FTD in 2010 after being diagnosed with dementia nos in 2007.  basically i'ved learned that, for myself, i don't go thru anymore testing.  i've run the gamut of neuropsych testing (initial one in 2007, and then re-evals in 2008 and 2009).  had initial cognitive eval in 2007 and have had cognitive re-evals every year since on advice of my neurologist.  i did have a repeat mri a year ago because of changes that have been occuring.  but neurologist said "no acute changes".

 

i've communicated with the association for frontotemporal dementia whenever i have a question.  more recently it's been about finding a home health aide come in to assist me.  i have no caretaker and no dependents.  the association for frontemporal dementia has a dvd "It Is What It Is"....i think that's my mantra because further testing isn't going to change what it is.  once a diagnosis is made from a qualified professsional in the areas of dementia/alzheimer's diseases, i have found there's no reason to go on with testing, unless one wants to take part in a study.  i don't know....that's what's worked for me, someone else may have a diferent opinion.  plus, i don't know if i can express my thoughts very well, so please bear with me.

 

my financial, legal (including durable power of attorney for finance and medical), living will,  etc. have all been made and taken care of.  i did it now so that i had the input and no one was making decisions for me.  then comes taking care of myself. 

 

i see a cognitive therapist every week, as well as a personal therapist 2 times a month.  i've found seeing her so helpful in dealing with this illness.  i also see a psychiatrist for medical management and also some therapy.  what's important to me is that all of my medical management team, from neurologist, neuropsychologist, cognitive therapist, psychiatrist and individual psychotherapist, have vast experience in dealing with dementias/alzheimer's disease.  my neurologist sent me to the university of pittsburgh medical center for a second opinion with a reknown neurologist who confirmed the diagnosis of FTD.

 

this is a long way around the rabbit trail and i probably didn't answer your question.  but as i said before, once the diagnosis is made from a qualified professional, for me, further testing was unwarranted, it wasn't going to change the outcome.  arm yourself with knowledge, because knowledge is power.  find a support group, for all of you if possible, and come to this forum as often as you want.  it's a great place for resources!  the book, "what if it's not alzheimer's" was/is also a great resource. (i forget who the authors are). 

 

if changes are noticed, however, tell your doctor.  further testing may, then, be warranted.

 

as i said before, come here as often as you want.  we're in this together!


nomemo
Posted: Thursday, August 30, 2012 10:05 PM
Joined: 3/21/2012
Posts: 439


ann - first of all, please forgive me for not telling you before how sorry i am for  your husband's diagnosis.  i know that this is a very scary time for you and for him.  and both of your anxiety levels will probably be heightened until his appt. in december.  do you have support from family or friends?  that is sooo important.  what has the neurologist or neuropsychologist said re: progression of illness?  after awhile i had to come right out and ask my neurologist to tell me, in no uncertain terms, what mine is.  he was so wonderful, actually held my hand the entire time.  but i think it all depends where a person is at the time of diagnosis, also, as well as what variant of FTD he/she has.  i, myself, have bv/FTD (behavioral variant), or Pick's disease.  there is also a variant that affects mainly speech/language and one that affects mainly movement, as well as corticobasal.  what has the doctor said about your husband? 

 

again, please contact the association of frontotemporal dementia (i think they're calling it association for frontemporal degenerations now because of all of the different variants).  they are a very valuable resource tool.

 

i can't stress enough how much we want to hear from you....for ANYTHING!!  and don't forget to take care of  yourself, also!  rest, rest, rest!!!  hard with small children, i know!  but pleae do try.

 

blessings to you!

 

 


RebeccaJ
Posted: Friday, August 31, 2012 8:53 AM
Joined: 4/19/2012
Posts: 83


Hi Annke,

I also have an initial dx of FTD, given 2 years ago. I am now 57 and will see a new dementia specialist in November. My goal is to see what type (variant) of FTD I have. My previous doctors have told me flat out there are no meds for this, only management of symptoms. I also am interested to know if I am predispositioned through genetics. In the two years I have noticed some changes, none major. I can still do my daily activities. My husband is my financial rep and my social life is very quiet. I am the "best practices queen" and constantly challenge my brain to perform. Though I always rest when tired. In act this is enough typing for now.

My words are tired but I want to finish by offering my hope and hugs to you and your husband.


mish
Posted: Friday, August 31, 2012 9:18 AM
Joined: 6/21/2012
Posts: 439


hi, adding to the the great advice from nomemo, I was first dx'd with a ? of ftd when I was 41; mri's and cat  and later a PET-at that time  supposedly showed nothing, the neuro-cognitive tests showed  a lot more.  They also ran tons of tests to r/o other things that could affect cognition  But all were hesitant to formally dx me due to age,  .......then I saw a memory, dementia specialist and after talking to my family and me and a test with him (cognitive) and looking at past reports from all others.  I  was dx with FTD  with the language type of picks and issues with executive functioning.  This was almost 2 years later; he stated the pet scan (done before) did show abnormality in the lobes henceforth the ftd dx.

Now I  had a spinal tap, another pet and another  mri- the tap showed the  presence of TAU proteins in  by brain  (indicative of alzheimer's) and other things. The new mri  showed  there were abnormalities in my brain and he stated that THEY WERE THERE  on the earlier mri's BUT  the  other MD stated they were all  fine.  My point- getting second opinions are very useful or more if needed (in my opinion) - it helped me. With this MD I was finally able to have a dx (which helps with disability) and medication which ( knock on wood)  has helped me -along with following best practices and aromatherapy. I don't know if that helped or not, I hope it did.

I am so sorry for what you are going through. I  hope the boards and other resources help. This board has been a life saver for me and has helped my family.

Please utilize  this and recourses as much as possible-its an invaluable tool.

Best wishes

Mish 


Mimi S.
Posted: Friday, August 31, 2012 9:41 AM
Joined: 11/29/2011
Posts: 7027


Hi Ann,

 

Welcome to our world. We're so sorry for your husband's diagnosis, especially since the children are so young.

 

You've already received some great advice from wonderful people. My only experience is the husband of a friend who has it.

 

As you probably know FTD is very rare and then understanding that it is further divided into three main forms makes each type rarer still.

 

Denver has some good medical options. What is the name of the main University/Medical Hospital there? Call and ask for the Dementia Research Office. If they have one, ask what their knowledge is in FTD. If they have research in that area, investigate. You could also ask there, or your doctor about the exact type of FTD he has. Do you have a hunch from Nomeno's description. It may be that future residence other than in your home is more probable in one type rather than others. 

 

Then you have to consider its effect is on the children. If there are behavioral issues then Maria Shriver's, What's Happening to Grandpa would be excellent. Your library should be able to get it for you. Read it yourself before reading it with the twins. Then pick and choose the parts you share. Watch them while you read. Please encourage questions.

 

It is so important that they know that daddy has a brain disease that causes him to ???. He still loves them, even though at times, they may not understand. And do talk with them after bad times. Encourage your husband to give lots of TLC.

 

There may come a time, possibly not for a few years, when the children will need help from a social worker or psychologist to understand what's going on. Often the school social worker may be appropriate. Do make sure beforehand that that person knows about FTD!

 

We'd love to have your husband join us. The Early Onset board would be most appropriate, but also the 'I have AD' board.

Wish I could send all a huge hug!!!


Johanna C.
Posted: Friday, August 31, 2012 6:52 PM
Joined: 12/9/2011
Posts: 12870


A very warm welcome to you Annke.  I am an RN whose mother had FTD and probably had it years before it became quite evident something was truly wrong.  We can see this now by looking backward.

 

I would NOT cancel my appointmen with UCSF.  They are nationally noted for being a center of excellence for FTD.  You will want to hear what they have to say.

 

As for being further workup; probably not necessary.  It is important to know that there are different types of FTD.  There is the Pick's Disease as well as non-Pick's variants.  The biggest issue with FTD is behavioral.  You will want to ask many questions about this at your UCSF appointment.

 

My mother initially had absolutely no problem with language, swallowing or other such issues.  She did however, did develop some behavioral issues early on in the course of her disease after diagnosis, and we found it necessary to take action.

 

She was alert and oriented (most FTD patients are) until the last stage of the disease.  Memory stays much intact and did with my mother ulntil her last stages.  Toward  the last stage of her illness is when my mother developed her difficulty with speech and swallowing.

 

She did, as the disease progressed, develop delusions (rigid false beliefs) about things and could still order monumental amounts of things from catalogs and tried to plunder the checking and savings accounts something awful.  In FTD, there is often found very compromised judgment and reasoning as well as losing the ability to have empathy for others; but even though they are high functioning for the earlier stages, and what they do does seem intentional (and some of it is), it is still caused by damage to the brain. 

 

Step-dad found it necessary to go to the bank (spouse does not have to know) and change the accounts.  He closed the old ones and immediately had new numbers assigned.  He put his name and that of my step-brother and myself on all the accounts, BUT he left Mom's name off of them.  This was necessary.

 

You will want to get all your ducks in a row in a legal AND a financial sense.  I would advise consulting an Elder Law Attorney even though your husband is young.  They are best equipped for the myriad details involved in situations such as these.  You can find one in your area by going to, www.naela.org  and using your zip code number.  You will want an attorney that is certified in Elder Law.

 

The Alzheimer's Assn. has a 24 Hour Helpline.  Volunteers answer the phone; ask them for a Care Consultant as your situation is complex.  Consultants are highly educated Social Workers that specialize in dementia and family dynamics.

 

If there is a support group for Caregivers, you may want to give it a try.  I live in California and there is a group for families of FTD patients, so hopefully you will be able to find one too.

 

Begin to think about a "Plan B" for a plan of care for every eventuality as changes occur.  This is crucial to save you much stress in the future.  I actually had visited and screened Nursing Homes and Assisted Living Facilities that specialized in dementia patients far, far in advance of need.

 

Do try to remember to take good care of yourself.  It is easy to forget to do this.  And I would have to say, this is not a sprint - it is a marathon in which someone keeps moving the finish line, so do build yourself as good a support system as you can.

 

I would like to let you know that anyone can communicate anywhere; but you may find that you enjoy communicating with other spouses on the Spousal Forum, some of them have loved ones with FTD.  Also, the Caregiver's Forum is the largest attended and if you have specific questions about care or care planning, that is the best place to go for more feedback.

 

You are welcome here and will find yourself amongst friends who truly understand.  Do let us know how you are doing, we will be  thinking of you and we truly do care.

 

Johanna C.


Annke
Posted: Saturday, September 1, 2012 12:08 AM
Joined: 8/26/2012
Posts: 6


Wow, thank you so much to everyone!  I am much more empowered to take some action here and get over the shock.  We are lucky that my husband is still working and we can take some time to get things in order.  I plan to be on this forum as well as our local support group lots!
Iris L.
Posted: Saturday, September 1, 2012 5:38 PM
Joined: 12/15/2011
Posts: 17932


Welcome to our online support group, Annke.  I'm sorry to learn of your husband's diagnosis.  If he can, he is welcome to join us on this board.

In addition to the wonderful advice you have received above, please check out your husband's long term disability policy at his employment.  There may come a time when he may be unable to perform his duties.  If so, it is better for him to go on long term disabilty than to run the risk of being fired for poor performance.

There have been differing opinions about disclosing the diagnosis to the workplace. If this is a concern for you, you can post a question about it.

Please keep coming back and sharing.  There is much wisdom and support here.

Iris L.

Geegee
Posted: Sunday, September 2, 2012 10:41 AM
Joined: 11/29/2011
Posts: 514


Annke, I wanted to join the rest of our gang and say welcome.  Please remember to also take care of yourself.  Being a caregiver is important to your family.  In fact they all need you!