Prognosis with PBP

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Idaho2790

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Thanks, Wilson, for your input. I think that this will be something I need to do soon. It’s really not as scary for me as it might be. My husband had esophageal cancer and following the surgery nearly four years ago, he, too, had a feeding tube since he swallowed nothing for almost two months. I nearly panicked over the thought of that, but we did fine. This, too, will be the new normal for us, I’m sure. May I ask what you use for speech? I’m only 7 months from when the speech became an issue and I saw a doctor for the first time! Thought it would move slower than that.
 

Wilson2009

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My AAC is a Surface Pro using Grid Player as the text to speech application. I went with the Windows-based device and system because I have been using Windows for almost 30 years now. Figured it would be easier than learning another OS. Grid Player works nicely for me as I can sync changes to Grids to my phone, plus it will us my Model Talker voice on the full version. While I didn't create the MT voice until after diagnosis, it does sound somewhat like me. Just which I had done it about 6 months earlier.

There are also a couple of applications you can install on your smartphone, Speech Assist and Speech Assistant. Speech Assist is free and you can't create your own phrases or custom answers, but is really simple to use. Speech Assistant costs around $10 USD but is significantly more sophisticated than Speech Assist. Just like the high priced AAC system, you can save custom phrases, answers and questions to terms you routinely use. It also comes with a lot more canned statements. I actually downloaded and installed Speech Assistant and began customizing it before I got my AAC device.

There is also a new AAC called 'visuALS System', that provides a complete system including the eye gaze bar at an affordable cost.
 

wishmobbing

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Idaho, very sorry about the progression and very glad about your can-do attitude. Like others and yourself said with good reason, don't wait with tackling the subject of the feeding tube. You are the most important person in this deal, so never be shy about advocating for your health and well-being.
 

Idaho2790

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Great information for me...thanks so very much. This gives me something to ask my team about when I go in. I know that even my husband is asking me to repeat myself now. That wouldn’t have happened even two weeks ago. My speech therapist talked about a Tobbii eye gaze device, but it sounded just so complicated. I’m not naive enough to think that ANY device is going to be as simple as just talking, but just don’t need something so elaborate that I’m overwhelmed. I was a twin. Lost her to an auto accident when we were 22. She always called me Chatty Kathy because I spoke to everyone and never knew a stranger! Wonder often what she would think about me not talking.....
 

Idaho2790

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With the PBP diagnosis, I am seriously wondering about a need to schedule a mammogram and a bone density test that my GP is asking for. Hav been unable to swallow calcium pills fo several months. No PEG yet.
 

Nikki J

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I have dealt with this by looking at 2 things. What would I do with the information? If there is a possible result that will make me do something different then I ask what is the burden of the test?

Some tests would be more burdensome than others. For example a mammogram is easier than a colonoscopy but if you would not treat a mammogram finding then it would be pointless. However might you consider a lumpectomy if they found cancer?

You might also add a third consideration - your individual level of risk for the disease being screened
 

lgelb

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Idaho, FYI, there are liquid calcium supplements. Many have magnesium and vitamin D as well, both of which can be helpful in the right dose.

As Nikki says, it's what you could do with the info. With a mammo, if something suspicious turned up, and you needed an ultrasound/biopsy, even lumpectomy, would you still do them? With the BDT, would you take something if it would reduce fracture risk? Another FYI: Fosamax is available as a once-weekly liquid form.
 

Idaho2790

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I had no idea you could buy calcium in liquid form. I currently take a drug for osteoporosis. Evista is the drug. Have been taking it for two years after a not so good BDT two years ago. According to the GP, you should only take Evista for five years max. My feeling is that the next three years will not be the most beautiful ones of my life! Why take a drug that is the most expensive in my repertoire? I guess I can bring that up at the ALS clinic in April...
 

KarenNWendyn

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Hi Idaho, I just now saw this thread. Regarding low bone density— Evista and liquid calcium are fine to take through a tube. Fosamax would not be good down a tube unless you could guarantee you could be upright (seated or standing) for at least an hour after taking it. Another alternative is Reclast (Zoledronic Acid) which is administered IV once a year. It is a
bisphosphonate like Fosamax. If you had to go off Evista, Reclast would be a good choice.

I’m a firm believer in not getting tests unless you plan to do something about the results. Low bone density, however, is easy enough to treat and might enable you to avoid a fracture. You never know— you might be around a while!
 

Idaho2790

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Thanks Karen. Will add that note for my pcp. I have such little information since this is a brand new journey for me...trying to get used to what I do and don’t do. Do most of you feel that a second opinion is a good idea? Have had only one visit at UCSF ALS clinic. I’m finding though that if I ask questions by email, most of the responses are, “oh, don’t worry about that yet!” Bcause my diagnosis was just made in January they feel I can wait on things...responses regarding communication devices are not forthcoming although my speech is so bad even my husband has trouble understanding. Suggestions like writing notes are fine, but I need to know what the possibilities are! A trip to the ER for breathing brought a response about maybe seeing a RT at the next visit. In reading posts, everyone seems to had pulmonary tests done with diagnosis or soon after. I’m wondering if I’m in the right place. If I knew what to ask or press for information on it would be less stressful
 

Nikki J

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We pretty much always say a second opinion is a good idea. I think on your other thread in newly diagnosed someone mentioned other clinics in the area

You need to feel you can trust your clinic of course and it must be hard to feel they are unresponsive

Just a comment about speech. You might look into text to speech apps you can use as Wilson said above I think some people have been happy with Verbally too but there are others. As long as you have some hand use that or texting or writing are your best bet I think
 

Idaho2790

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Heading to UCSF on Friday for scheduled visit. I am amazed at how quickly this is progressing! Three months ago speech was the issue, then swallowing, then fatigue, now it’s sores in my mouth and on my tongue.i slept last night with a handkerchief between my teeth to avoid damaging my tongue further. Yesterday my son bought Musinex cough syrup to try and remove some of the garbage in my throat. That helped some but unsure what the neurologist will think of that. A cough drop worked but because I have no control over my tongue I was scared to death I would choke! Biggest problem is just exhaustion. Is this typical of PBP?
 
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