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Believe It Or Not But A big Thank You
Posted: Sunday, May 24, 2020 11:10 AM
Joined: 2/1/2018
Posts: 76

Been a while since I've posted on here but I just wanted to share.  

 As many here know, I have had many ups and downs with my DW of 46 years (Our anniversary coming up June 8th) diagnosed with FTD in 2016! She has been on hospice for a year now which has been a life saver for me and at one time during a really bad issue hospice even told me they thought it was the final moments! But...... due to certain circumstances which I wish to share, she is being discharged from hospice as she actually has not only plateaued but has shown some improvements in the last three months! I know that due to a special person on this forum that this was possible. Let me give a brief history then why she was discharged. Three months ago DW was entering stage 7 and going down hill fast. She was double incontinent, unable to do anything on her own, unable to say more than a couple incoherent words. She lost consciousness multiple times. She wouldn't respond to anything said or done. There are quite a few other things that went away as she slipped further into this abyss. At Christmas I was telling family that I felt that it was the last one we were going to have her with us. Well.. that's changed! Three months ago a poster on this forum told us how she saw such an improvement in her husband after his doctor prescribed Singulair (Motelukast).  After doing some research I found that it looked like it wouldn't do any harm in trying. I talked to her hospice doctor and he did some looking into it and decided it would be OK to try. She now has been on it for three months and I can absolutely say I feel DW will be around longer than expected. She now actually responds to things said to her with not only facial expressions but sometimes words that I haven't heard in what seems like years. She now actually pull up her briefs and sweats and will help put her shirts on when changing or dressing her. There are more words coming out every so often. About 2 weeks ago she was walking in front of me and I snuck up and goosed her. She quickly turned around and said " you asshole!". Also one evening after telling her that I loved her she responded "I love you too Hunny Bunny!" This was as clear as before this whole FU'd disease hit us! We were doing a video call with her sisters and she said "oh there's Kathy!" everyone was so shocked! I know this won't last and some would say that they don't want to prolong things and that's OK but for me one more day when I kiss her she kisses me back or when we go to bed and fall asleep holding hands, or when she can call me an asshole, is absolutely priceless and those and many other things I can be thankful for.

 Please, I'm not saying this will help anyone else but I just want to say thank you Molokai16 and to all others sharing on this forum may god bless you all!!

Posted: Sunday, May 24, 2020 12:21 PM
Joined: 4/2/2018
Posts: 2887

That's great news! Take every win you are offered.
Posted: Sunday, May 24, 2020 2:40 PM
Joined: 3/15/2018
Posts: 533

What a blessing!
Posted: Monday, May 25, 2020 1:24 AM
Joined: 3/7/2020
Posts: 90

Congratulations this sounds great for her and you. Take it while it lasts. Good luck.
Posted: Monday, May 25, 2020 4:59 AM
Joined: 5/24/2020
Posts: 5

This is great news.  I'm so happy for you and your DW.  Thank you for sharing.  HOPE is a wonderful thing.
Posted: Tuesday, May 26, 2020 7:14 AM
Joined: 10/24/2019
Posts: 225

What a remarkable turn of events.  How wonderful for you both.
Posted: Tuesday, May 26, 2020 7:46 AM
Joined: 4/23/2019
Posts: 377

I am so happy for both of you!!  

Michael Ellenbogen
Posted: Tuesday, May 26, 2020 7:49 AM
Joined: 11/30/2011
Posts: 3165

Wow, Have others experience this and would like to know more about your story. What is this drug used for? 

Posted: Tuesday, May 26, 2020 8:57 AM
Joined: 1/12/2018
Posts: 227

Good news is always welcome! So glad you are getting a few of the moments with her.

Posted: Tuesday, May 26, 2020 9:59 AM
Joined: 2/1/2018
Posts: 76

Michael,  Singulair (Motelukast) is used for the treatment of Asthma. There's been studies for quite some time for ALZ and in other dementia patients with positive results. Most have been for early onset but since others have tried it in later stages with positive results too I thought it was worth looking deeper into.  When I did, there were both negative and positive articles depicting results. I decided to give it a try anyways due to Molokai16's observations after knowing her plight and results. It only costs us $6 through her medicare plan so there was no financial issues and due to her rapid decline myself and her doctor felt it wouldn't hurt to try. Other than a few items such as incontinence issues, feeding, and drinking (all small improvements though) I would say that we are now where we were at least six months ago in my DW's progression and not declining. This is actually quite something as my DW has been going down hill so rapidly. She had gone from first noticing memory issues in June of 2015 to on hospice in May of 2019. Now that she has plateaued I will continue using my journal to record the ups and downs.

Michael Ellenbogen
Posted: Tuesday, May 26, 2020 10:10 AM
Joined: 11/30/2011
Posts: 3165

Please keep us informed if you see more continued results over time. Thanks 

Posted: Thursday, May 28, 2020 1:10 PM
Joined: 2/26/2016
Posts: 213

I would just like to say that Emory University in Atlanta, GA is sponsoring a FDA clinical trial using montelukast (up to 40 mg a day) as a treatment for early stage Alzheimer's. We should hear some results toward the end of the year, that is, unless covid 19 causes a delay in conducting the trial.