RSS Feed Print
Fast progression
Tjahnke
Posted: Saturday, July 29, 2017 1:02 PM
Joined: 7/6/2017
Posts: 19


My 46 year old husband was diagnosed with PPA FTD about 14 months ago and showed very few signs before of the disease which we all thought was stress related. He is now mute and dependent on me for everything ( showereing, dressing and using the toilet ) He is slow to walk and get up and down but is still able to slow jog 4 miles a day five days a week. He is really not able to do anything on his own,, even work a tv remote. I know every case is different but has anyone experienced such rapid decline after a diagnosis that came out of nowhere except family  history? I know there are stages for AZ but are there stages for FTD too? If so, what stage is he in? I keep reading stories of LO who have had he disease for 6 years and at the point my husband is now. I am wondering if this rapid decline will continue to be the journey.
alz+
Posted: Saturday, July 29, 2017 4:28 PM
Joined: 9/12/2013
Posts: 3560


Hi and welcome. I am sure you researched this online and have good medical care available.

I am not qualified to address any of this but it is wonderful you are looking in various places for help.

wishing you courage and lots of love


jfkoc
Posted: Saturday, July 29, 2017 4:43 PM
Joined: 12/4/2011
Posts: 18962


 

after a diagnosis that came out of nowhere except family  history

It does sound like an extremely rapid decline and an understandable reason for you to be concerned.

Does that mean that the diagnosed protocol was not followed? If not then this will give you information about it:

http://alz.org/alzheimers_disease_diagnosis.asp


llee08032
Posted: Friday, August 11, 2017 9:17 AM
Joined: 5/20/2014
Posts: 4405


is it just me? I've never not responded to people who take the time to offer me support or try to answer my questions. Does common courtesy and respect fall to wayside also in the scheme of all the pain? I don't mean to cause anyone more pain than they are already going through...but isn't support supposed to be reciprocated? 
Keep It 100
Posted: Friday, August 11, 2017 11:19 AM
Joined: 2/26/2017
Posts: 582


If I am understanding the above question correctly:

When I offer someone who is in pain, or grieving, etc etc, support, I never expect anything in return. It's unconditional. 

Considering the OP wrote  He is now mute and dependent on me for everything ( showereing, dressing and using the toilet ) He is slow to walk and get up and down but is still able to slow jog 4 miles a day five days a week. He is really not able to do anything on his own,, even work a tv remote. , I would not expect this worn out, distressed, grieving woman dealing with a fast progressing 40-something husband to be able to track and respond to all immediately; maybe not for months or years.... But I am sure that in her heart she appreciates everyone here, and will be, in turn, able to offer reciprocal support when the time is right. 

But perhaps I misunderstood the question....


JenK
Posted: Friday, August 11, 2017 6:54 PM
Joined: 8/11/2017
Posts: 1


My husband was dx at 57 with bv FTD so his behavior is the problem at this point. He has declined in the last 2 years from being active, still driving, exercising, wood working, household tasks etc. to a guy who only walks and watches TV. I am, really struggling now as he walks 5 miles at a time and when he wants to go he goes- no stopping him so even if I found a care giver who could walk with him he will still go off course and will NOT listen- goes on private property and the police get called, . The care giver obviously can't take him down.  Extremely stressful and I can feel my heart rate increase as I drive home from work just anticipating what lies ahead. I work full time as I am too young to retire and need to.  I just applied for FMLA so I can come home early a couple days a week. I have 8 sliding glass doors that i need to buy some kind of locks for so he can't get out but I am worried about how he will respond if I lock him in. I bought alarms for the doors but he is too with it I think at this point and he will figure them out. It will alert me but I still have the problem of having to chase him for 5 miles and that still doesn't guarantee  he will not do something he should not as he is bigger and stronger..He laughs all the time and says inappropriate things to strangers as he can not hold much conversation. No drive or processing to do anything work related so I take care of everything, no respect or feelings for his family. I am now his maid after 37 years of marriage. He still takes care of his personal hygiene with prompting, but has urgency sometimes and has had accidents- mostly when hiking in woods luckily. It must be hard having to take care of all of your husbands personal needs- I know that will come..

Sorry to hear about your husbands progression/dx.   They say there are stages in FTD. But everyone is different,  5-11 years seems to be the prognosis,  I have been on other chat groups- there is one on caregiving.com on Monday nights for FTD also great info on the FTDA site. I dread the road ahead, as the unknown is scary and as everyone is different with this cruel disease so you just do not know. If I knew how long this would last I might be able to gauge if I can do it. Right now I am feeling I can not. I also feel like this is a nightmare and it is so hard to explain to people what it is doing to both of us, our children and family!  I realize this is not positive or uplifting but I am struggling and I know you are too. It comforts me to hear others are feeling the same. There is no sugar coating it. 


Tjahnke
Posted: Friday, August 11, 2017 7:15 PM
Joined: 7/6/2017
Posts: 19


I understand the fear and sadness. It never goes away. It does help to know I am not alone in this. Just so scared with how quickly things are progressing and wanted feedback from others who have experienced the same. Prayers to you