Phil's wife
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  • I am thinking of you and wanted to thank you for being so strong. What a treasure you are. I got my diagnosis last year, and I believe it was you all I saw waiting to see Dr. Bedlack in an exam room when I passed by. That was the day he walked in with his purple skin tight suit and black bag, then without pause he branded me with those 3 letters. I closed my eyes and wanted to run in each exam room and hug everyone. I should have...
    Please accept all my hugs and love. You all will be in my heart forever. xoxo
    Stephanie checking in to see how things are going, I remember the long days after my first husband passed away. I have already lived through losing one husband so if you ever need to talk just please let me know..
    It was exciting to see you and a couple of others on here who have spouses with both ALS and FTD. I don't get on here very often but I'm always impressed by what an informative, loving forum it is ... people bonded together because of illness, hope, determination, fear ... The combination of ALS and FTD makes this an even more unique/lonely experience. As you say, every case is so different. I would be so interested in communicating about this combination disease (or this same disease with a different strand ...). thanks for your posts.
    I called out the program director of Walton and Johnson about deleating our comments and banning us from the facebook site. He has yet to get back to me about this.
    Well, dad refused all treatment at first. Now he'll accept some. He's refusing and MRI but is accepting a CT scan but that will take a few weeks.
    Now also he's going to an assessment at a clinic for all the testing but that will take months before he can even be seen. And he's so stubborn he'll probably walk out halfway through. I've been reading around the clock. It's been 9 months since his assumed stroke and Mom says he's getting worse.
    His speech is deteriorating and just his behavior is not normal. Could be vascular dementia could be FTD or primary progressive aphasia or damage to the brain stem from the actual stroke. It just feels like a bit from all diseases. The yawning is killing him. Without fail he yawns every evening and he yawns while he's sleeping sometimes too. It's making him crazy. I'll ask my mom about the twitching. the swallowing is minor my mom said, it just depends on what he's eating. Thanks for responding.
    Oh, I didn't answer your question of did this sound like my husband's story. His ALS started as slurring and twitches on shoulder and face. We didn't think too much of it for a year or so. Doctors said it was possible to be a side effect of other medication and it progressed extremely slow at that point. The FTD started as mood changes - lack of empathy, loss of logically sound decisions off and on and forgetting words. About the time of diagnosis is when his progression began to get very fast and went to all limbs at about the same time. It is so hard to compare patients or stories too much because everyone is so different. I sure hope your dad doesn't have ALS or FTD. Both are very difficult.
    Does this sound similar to your husbands story? It could be primary progressive aphasia or frontotemporal dementia.... I don't know. What's scared me though is the yawning and the apathy and inflexible personality and the speech issues. I'm sorry about your husband. I cannot imagine what you are going through.
    Continued! Some words are not there and some are mispronounced. No slurring at all. This brings us to late autumn and his friends are starting to notice his speech etc... then to Christmas, he's really tired, going to bed at 7:30 pm. Now he's lost about 15lbs and that never happens. Also more than anything it's the chronic yawning. Mom says that he's so frustrated, he cries about it. then it was throat clearing and that's gone but popcorn gets stuck etc...but the yawning have never ever stopped. That's the scary part. And the rudeness and crying or laughing at weird times. Sometimes he acts like a child. But there are no muscular issues at this point. No twitching or anything. Mom cried the other day and says she know in her heart that something is really wrong. She says he gets this blank look in his eyes like he's not there. She recognizes it from when her mother went off the deep end. It's so early, it's months away from diagnosis. We are just waiting.
    Hi Stephanie,
    Thanks for responding to my post about my Dad yesterday. We are so unsure and testing is not scheduled for months. I think it started out late last spring. Dad was a little dizzy standing up. Maybe some nausea, not much though. I remember going home and looking up vertigo, my parents don't have a computer. Then nothing. Then in July my mom said he was acting funny. Just staring off into space for a few moments. Almost a second too long. Then he would talk to her and say "what where we talking about?" mom just thought it was early old age. Finally we all convinced them that he may have had a stroke and they should go to the doctor. With only 2 chambers working in a 16 chamber Cat scan machine dad was said to have a stroke. He said he remembers the day. he was at the grocery store and he felt funny behind his eyes and that was that. Well, with a stroke your speech is supposed to get better or stay the same. He's having more and more trouble. But he's not really slurring.
    I have a 16 year old son. I wish I could talk him into sharing with teen's like your children. He tries to be strong, but I know it is so hard for him. He is an only child, sometimes feel even worse about that. I get it totally. You sound like a fine mom.
    Beth has all of my information. I told her she could give it to you if she met with you. Please ask her for it. I would really like to get together with you and your friend. I can't begin to tell you how much it has helped me to have someone to talk to. My friend's husband was diagnosed 2 years ago, but my husband has progressed much more rapidly-so we help each other. We thought we had to wait until Terry quit work, too. Luckily, we have short term disability that will carry us through. Also, Terry was in the Air Force (ALS is now a presumptive service related illness) which means we (children and I) will have medical insurance. Oh, if you have a long term care policy, file on that immediately, too. There is just so much to check into. It's nice having people point me in the right direction. I would love to pass that information on to you and make this a little bit easier for you. Take care.
    Thanks for the notes, Missy. I just got off the phone with Beth, she is coming by to see us this afternoon. I do agree with you, I want to stay ahead in this and be prepared with whatever Phil needs. Things have progressed in the last month must faster than the previous 1 1/2 years since we started noticing the speech problems. So, it is scary. I thought Phil had to stop working before he can apply for SSDI. Next week I will begin the prep on future items. Up until this week we were still trying to find something else Phil could have other than ALS. Now we are girding up our loins for the fight. Thanks Missy, we should talk on the phone or meet for lunch sometime -- even include the other ladies of husbands with ALS. I have a friend whose boyfriend has ALS and we have been discussing this for a month or so also. It helps to talk to others who can relate.
    I just finished completing the online SSDI application. It is very easy. I would suggest doing it ASAP. I have heard it takes 120 before any payments begin. You never know where you will be in 4 months. 4 months ago, we thought Terry had a brachial plexus injury. He was still travelling for business. He was working with an investor to buy his division of the company. Today, he is on full disability. Beth delivered a wheelchair today. You just never know. I was told the pecking order is - wheelchair lift equipped van, power chair, bathroom renovations (retrofits). This was confirmed by two other ALS patients and their caregivers. I'm just trying to stay ahead of the game at this point.
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