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halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
My first symptoms were bulbar, some breathlessness while speaking early this year, then slurring started at the end of April. A few weeks later I noticed my hands felt strange and weak while writing, but they still were strong in strength tests.

I was diagnosed in August and in the past two months I've had some noticeable progression. My hands are quite a bit weaker, especially the right hand, and I'm having some trouble with knives in the kitchen. However my legs are holding up pretty well. I was training for a marathon six months ago, and I've cut back to some easy jog/walks of two to three miles. Still by ALS standards this is a lot and so I'm keeping my fingers crossed (can still do that with some difficulty!) that my legs stay good.

So what I'm wondering about is, looking ahead, what should I expect in terms of progression and possible assistive devices? My insurance will pay for DME (durable medical equipment) but there is a limited amount per year, so I was thinking maybe I should ask the doctor to prescribe something I might need next year, so I can get it this year and still have the full amount available later.

Then my wife and I were talking about possible home modifications we might need to make down the line, even considering moving into a more accessible house. This is a big step for us, to take the diagnosis so seriously. Most of the focus in what I read is on wheelchair accessibility. Then they talk about putting in grab bars and such. But I am worried, if my hands go before my legs, then by the time I need a wheelchair, will I even be able to use my hands? Will I be able to use grab bars?

I know everyone is different but I wonder how other people fared who may have started with similar symptoms and presentation. Thanks!
 
Hi, Hal. My Mom started with similiar symptoms. The main thing with ALS is staying a few steps ahead. I would a least get a waljer before you "need it". You can get an inexpensive one, your local ALS center may even have one in their closet. I wish Mom has gotten a Peg tube before she couldn't eat at all. She lost sooooo much weight. I also wish she had gotten a trach before she almost died from not being able to breath. She is doing great now. Just try to stay ahead of the game and like you said, it is hard to say exactly how your disease will progress. The two things that saved Mom's life were her suction machine and her cough assist. Both medicare paid for ( well mostly). God Bless you and your family!
 
That's a WALKER by the way...sorry!
 
just wanted to chime in to say... my mum has had bulbar onset since April 08... by October 08 she had noticed a heavy feeling in her hand. I've read about a lot of other PALS who had a similar sequence of progression. Her legs are still fine, balance seems to be the biggest problem more than lack of strength on standing.

anyway, halfin, i would say just be careful. try not to push yourself too hard.. although it's great that you're running!

the thing with ALS is is doesn't seem to finish one thing before moving somewhere else... so your arms won't necessarily "go" totally before something else becomes effected... so you may need grab rails and be able to make use of them.

i know everyone says it's best to stay one step ahead of the disease and that's the key to fighting it -- i have a feeling that things won't go like that for my Mum, who is the single most headstrong person i know. She refuses to have anything brought in or changed until it is absolutely necessary -- and that's her prerogative. She gets an enormous sense of satisfaction from making these decisions and her pride and self-esteem have already taken enough of a battering this year so I don't push the issue. That's not to say I don't have the occupational therapist on speed dial ready to have whatever she needs installed the very next day... that's largely because we have the financial freedom to do this. (NHS here in UK helps!)
 
Hal, How are you doing with your breathing? Have you had your FVC measured?
Since you were talking about taking of DME reimbursment , you might consider looking into BIPAP machine purchased this year even if you might need it few mo from now.
 
Hi, thanks for the good advice. My FVC should hopefully be fine, it was 108% in August. I am a little worried because I have had a lot of progression this past month in other areas, and now I find myself wanting to stop and take a good deep breath pretty often during the day, it feels very satisfying to do that. I don't know if that means anything or if it is just a habit which I never noticed before and now I have become aware of it. I go back to the clinic at the end of this month, we will see what the FVC is and maybe I can ask what they would recommend in terms of potentially useful DME.
 
Hal, I think all these symptoms might be not all attributable to progression... Same thing is happening with me; every day I notice a new symptom.
I'm reading a lot about ALS; and I think that we are going thru this new stage after the denial, where we actually starting to accept the diagnosis and becoming more tuned into our bodies.
Lets hope your next clinic visit goes well and you will be reporting to us that there were no changes found on your exam.
 
Halfin, I am hoping that you continue to have a great FVC... And 108 is really good. I am hoping you are just more aware of everything. I know sometimes a doc will move up your fvc test to earlier than your visit if you are concerned. They can get the results usually within a day. I actually ask the person doing it for me, the number and know enough to understand it myself.
 
Yes, it looks like I will get my FVC tested this week hopefully. My wife is kind of panicking and sent a note to our local neurologist, who is actually a friend of ours, describing what we have been experiencing, and he will get me in tomorrow. He has asked for the local pulmonologist? pulmonary specialist? anyway, the lung doctor to call me and schedule a test soon.

I also want to get something for the EL. I've been crying and laughing inappropriately almost every day lately. I told my co-workers last week about my ALS, and now I found out the company is going to give me some kind of recognition next week for my years of service, etc, and I know that is going to be emotional. It wouldn't be that bad to tear up a little but with the EL I'm going to be bawling. When I cry my face gets all contorted like I'm in agony and it looks pretty bad. A few dignified tears will be quite enough, so hopefully he can help me out there.
 
So glad your are going to get in earlier. I am relieved to hear that. I think that a help with EL. is definitely a good idea, I suffer with it pretty bad when I am not on medicine. My eyes get red and super puffy when I cry, it stays that way for days, everyone who I run into knows I was crying for days afterward. I remember going to see a movie before I as diagnosed. and laughing so loud my son moved to another seat, he was so not understanding,, But how many pre-teens (at that time be?)... I love when my son calls it emotional Liability... I always say you are correct it is a liability.... Hope you find some answers and help very soon. You must mean a lot to so many in your workplace, and I can sure understand why, how helpful you are to this forum..
 
I met with my local neurologist yesterday, hadn't seen hiim for 2 months. He ordered the FVC on Tuesday but I still haven't heard from the lung people, they seem a little disorganized. He also wants me to have a swallow study although I have been careful about what and how I eat and not having all that much trouble. Still I'm coughing on water a few times a day and have a bit of choking every 2 or 3 days, not bad but maybe worth looking at. The swallow will be with a speech pathologist having me do different thicknesses of liquids, he said.

I also talked about the EL, and he prescribed Xanax. We asked about Zenvia but he was not too happy about the off label usage and said he'd had good results with this. So I started it yesterday and it already seems to be helping. I had received a gift basket on Tuesday from the accounting department at work and I was just sobbing, I was so touched. Told the neuro about it and I got so emotional I couldn't speak. But today I can talk about it fine, maybe a touch of moisture in my eyes but nothing dramatic. It really was a kind gesture, I don't even know anyone in that department. But my reactions are much more balanced and appropriate today. The drug's making me a little drowsy but hopefully I will adapt to that.

I also went to our local ALS support group meeting yesterday, the 2nd one, and I really enjoy those. But I almost had an absolutely, unforgivably horrible and inappropriate reaction when someone was talking. Thankfully I was able to repress it. I was going to get up and run out of the room if it got away from me, but it worked out OK. A real scare though. That was before I got the Xanax so hopefully that will fix it.
 
Halfin,
Glad to hear from you, sorry about the confusion, hope they get you in and get things straightened out. I take Paxil CR, I am pretty happy with it, really does help balance me. I wonder if you might need something more like that, I know people who take xanax and I do hear that it does make them drowsy. I know sometimes the doctor will prescribe a anti-depressent and then something like xanax if you need something extra at certain times. Sounds like you work with a thoughtful group of people, and they sure think a lot of you. I have had the swallowing test before but I am due for another one. You sound like you have a great and loving wife. I know that love like that will only grow stronger. Keep us posted.
 
Hal, I'm glad your appt with local neuro went OK.
Regarding the Xanax, when I started on it in August it made me drowsy and even fatigued. At my doc suggestion I take only a half tab during the day (6 hour interval is a must) and a full tab before bed. It works much better.
Have you started the Glutathione IV?
 
Hi, just wanted to mention that I had my lung function measured today and it was very good news, almost embarrassingly good: 118% of normal! I was 107% in August but I had a bad cold at that time which might have made a difference. I was telling my wife that they say that changes in FVC tend to be linear and steady, so at this rate I should be blowing out forest fires in a couple of years.

I met the local pulmonary doctor for the first time, had been referred by my neurologist, and I really liked him. I don't think I've ever met a doctor who was as warm and caring. He asked to get copies of my other test results, he really wants to help us through this. We talked a little about our thoughts on eventual management of respiratory failure, and he was very supportive of whatever direction we want to go. He has a couple of other ALS patients so he has some familiarity with how it goes.

Anyway that was very good news, I am feeling good today. My speech was very good too while meeting with the doctor, best its been in several weeks probably.
 
Hal,

Thay is good news, God Bless you and your family.

Sandra
 
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