Spreading the word about FTD and ALS

keptfreeinhim · 02-24-2009, 01:01 PM

Hello,

It has been almost a year since I was on this site last. My husband died on December 6, 2007 after fourteen years of FTD and one year of ALS. I am finally beginning to come out of the "fog" of my grieving.

I have started a blog, a website, and a Zazzle account to help spread the word of these diseases and to try and encourage caregivers. Feel free to share these sites with others and let me know ways I can improve them. I look forward to being more involved on this forum.

Patricia (Keptfree)

CindyM · 02-24-2009, 02:46 PM

Hi Patricia- I removed the link to the site that sells gifts with the caregiving logo. We don't usually allow selling stuff around here and try to keep sits that do so to a minimum. Cindy

keptfreeinhim · 02-24-2009, 02:55 PM

Cindy,

I'm sorry. I didn't realize. I understand and thank you for removing it.

Patricia

brooksea · 02-24-2009, 09:03 PM

Well, I really hated that. As we say down here "It really sceeared me bad!"

I don't think FTD with ALS should be represented the way you have. Your husband had FTD before ALS. I think FTD after ALS may be different.

Thanks for caring. And I'm sorry for your loss.

keptfreeinhim · 02-24-2009, 09:30 PM

I'm sorry it frightened you. I'm not sure what you are saying though. I didn't know there was an acceptable and a non-acceptable way to represent FTD and ALS. They are what they are. Everyone is affected differently. There are no two cases that will present the same way regardless as to whether it begins with FTD or begins with ALS. My desire is to try and help people who don't know anything about the diseases to understand how difficult it is from the caregivers standpoint to care for them. There are no easy answers for caregivers. We do what we think is best for our loved ones. Sometimes we have the help of others who do their best to understand an incomprehensible disease and sometimes we deal with people who don't have a clue what it means to live with someone with dementia. I can only share form my experience.

No, my husband did not present with ALS first. Would it have been easier and prettier if he had? I don't know. I know because of his dementia he never understood the limitations he needed to be under with ALS which made it very difficult to care for him. If he had ALS first, that part of the disease would have been easier to handle.

Maybe the problem is with my understanding of this site since I have only been on it a couple of times. Is this site primarily for those dealing with ALS who may just be beginning to show some possible signs of FTD? If that is the case, then I apologize for taking you in a direction you don't care to go yet.

We did not have a good support base when we were caring for my husband. People did not understand what it was like to live with someone who had FTD and ALS. Somehow the information needs to get out to people that these diseases are not pretty diseases and that caregivers need all the help and support they can get.

Once again I apologize for causing you distress. That was not my intention.

brooksea · 02-24-2009, 09:46 PM

Quote:

Is this site primarily for those dealing with ALS who may just be beginning to show some possible signs of FTD? If that is the case, then I apologize for taking you in a direction you don't care to go yet.

I really don't understand what you are trying to say. Not everyone with ALS gets FTD. But I appreciate your effort to let people know it could happen.

Your husband's case seems a little (lot) different from the norm in pALS.

Quote:

No, my husband did not present with ALS first. Would it have been easier and prettier if he had? I don't know. I know because of his dementia he never understood the limitations he needed to be under with ALS which made it very difficult to care for him. If he had ALS first, that part of the disease would have been easier to handle.

\

My husband does understand the limitations he is facing. He doesn't like it, but he is accepting.

So...I still say please don't sceeare us!!!

keptfreeinhim · 02-24-2009, 10:03 PM

I will look for a group that is primarily for frontotemporal dementia then.

Blessings,
Patricia

shrimpbox73 · 02-24-2009, 10:26 PM

My husband was given the dx of als and the added bonus of ftdementia.The doctor at the als clinic is sending us to a cognitive doctor on march17th.My husband has short term memory loss and although he understands what is happening part of him can't understand the what the long term effects of any situation are.Last week he drove his power chair into the table 3x and knew he did it,but didn't know why.That really scared me.I have heard that if you have this it speeds up the progression.Is this true? One of my nurses said it makes it easier on the patient but harder on the caregiver.I am glad you posted about this because it doesn't seem like alot of people have it.Its hard enough that no one can tell you what to expect cause every case is different,but I wish I new more about the dementia.

Al · 02-25-2009, 12:04 AM

Hi CJ. Can you click on keptfreeinhim's user name and check under view profile and statistics and then find all posts by her. Click on her very first post here. You posted there. While this is primarily an ALS site we are now being hit with new statistics saying FTD is more prevalent than first thought. I don't want the forum hijacked by another disease but feel there could be some relevant information passed on here.

AL.

keptfreeinhim · 02-25-2009, 06:37 AM

Al,

Look this is not that important to my recovery process. I just thought I could be of some help, but I don't want to cause problems with your site or hi-jack for it another purpose. Nor do I want special permission to participate. I will just look for another forum where I can be an encouragement to those who are dealing with a similar disease as my husband.

Patricia (Kept free)

keptfreeinhim · 02-25-2009, 07:53 AM

shrimpbox73

So as not to distract from this site, I would recommend you check out this site for info on FTD and ALS - http://www.ftd-picks.org/?p=diseases/ftdmnd . They have some helpful information. Beyond that the book, What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia (Updated & Revised) by John Q., M.D. Trojanowski, Lisa Radin, and Gary Radin is an excellent resource.

I'm sorry you have to deal with these diseases. I would say together they make it harder on the caregiver and the loved one. And yes, it often progresses faster with both diseases. I would be happy to correspond more with you. If you want more info, you can contact me through my website or blog then we won't need to continue the thread on the als forum.

Blessings,
Patricia

brooksea · 02-25-2009, 10:33 AM

I apologize. Perhaps I sounded a bit harsh.

It was my understanding that FTD/ALS progressed at a more rapid rate and the disease is considered a "form" of ALS and is one process.

I do not mean to run you off the forum Patricia.

BethU · 02-25-2009, 12:14 PM

Patricia ... I viewed the video last night but didn't respond right away, because it is so powerful, and I had to let it sink in. I hope you will keep sharing on this forum, as FTD is very much a concern of mine. I, too, think my FTD started a few years before the ALS, and I'm still trying to sort things out.

I worry that the anger I'm expressing in lability outbursts now may become dangerous to myself and others, and I'm looking for all the clues I can find. Neuros pretty much dismiss the subject.

Your video gave me a lot of reassurance, actually, because your husband wasn't having a labiliy meltdown, as I have been doing.

Patricia ... what a tragic situation for your family. How did you and your kids manage to handle this? I appreciate your sharing and spreading the word about this variant of ALS, and have bookmarked your website. I'm going to take my time easing into learning more about actual FTD in action.

Whoever said a picture is worth a thousand words sure nailed it.

I'm praying for you and your family and your husband.

keptfreeinhim · 02-26-2009, 07:54 AM

BethU,

We handled it the best we could under the circumstances. We were able to keep him home until the end, but as each day went on it became increasingly more difficult. My children didn't have a normal childhood. The younger three never knew their father when he was "normal". They were embarrassed by some of his actions so I had to protect them as much as possible. He was never violent with them, he just did such odd things. The older three knew him before FTD and were more bonded. They miss him the most.

It is fine to give yourself time to adjust and learn gradually what you need to know. You will know when you are ready for more info. I would encourage you to make sure you have one or two people who love you and care for you deeply who are willing to be your advocates. Many times with FTD the person affected is insulated from their actions and behaviors and how their disease affects others. Trust your loved ones when they have a concern.

Blessings,
Patricia (keptfree)

judylyne · 02-26-2009, 08:29 AM

My husband started with the FTD symptoms when he was 57 but didn't get the Physical symptoms of ALS until he was 59. The thing I worry about is the ALS with Ftd is more likely to be the inhereted kind.