Old 03-11-2009, 12:14 PM #16 (permalink)
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Hi Becca,
Haven't had time to check the posts in about a week. I'm a school bus driver and spring of the year brings many extra trips and things in addition to my normal schedule, being a taxi for my 10 yr old's lacrosse practices among other things. You know how it is.
Sorry to hear about the fall and glad that at least so far she seems ok. We had my mother back to Georgetown yesterday for a more extensive EMG. The progression rate seems so fast and obviously much faster than any of us would like. She doesn't have her bi-pap yet... I am curious about that. The respiratory folks just came out and set her up or did she have to have a sleep study or something so they would know how to adjust it? Mom is to be getting one, but we're waiting (impatiently too I might add..).
We want to get her a hospital bed, as it is not real comfortable sleeping in the reclining chair. They suggested we speak to the MDA people and perhaps get some tings from the loan closet there. I know nothing of that process, but will learn fast I am sure.
We're trying to face each day as it comes, not dwell on what will be and doing our best at keeping the flow of life as normal as possible. I've noticed with my mother that she is choosing softer foods and suddenly becomes "full" of the harder to chew/swallow foods. She's attempting to deny all of her symptoms and weaknesses so will not openly admit that the swallowing of foods is difficult, she simply suddenly declares she is "full".
Reality of the disease is beginning to set in with her now, which has me fearful of depression and how you combat that when the reason is so easily understood and in knowing the outcome? I became depressed after losing my first hubby to a heart attack and I was able to overcome that because I was only 36 and healthy and had a quality life to continue living... where can I point out the hope in life to my mother?
We're trying to make hte most of it... my oldest bro and I took her to the EMG and we all stopped for dinner on the way home. Made a few fun comments here and there and she told us we were being bad (which was funny 'cause he's 52 and I'm 46) and we told her "Nope, we're making memories that only we have". That did bring a smile and we reassure her she is not a burden on us and how much we value her as a person and mother. I know it hurts her to be dependent on us, and she is aware that we are taking time away from work, family, etc to see to her needs... but I think it does make a difference that at least presently, we are doing so willfully, not out of duty. The problem I see with it, is our other brother never stops in to say hello, doesn't call or offer assistance of any sort and lives the next house down. We all live on the same road.. within sight of one another. She's feeling that hurt too. Any experience in dealing with family members who need a good swift kick in the pants?

Stay strong Becca... and hang in there with me. I'll be coming to WI in a couple of years... maybe we can cross paths.

Mary
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Old 03-12-2009, 04:04 PM #17 (permalink)
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Default hello.

hello there...becca here...i just read your post and only have a minute to reply...as for the bipap...i have found that most people w/als who have a fvc 60 or lower go on bipap...my mil's is 50. some docs start it even sooner as they feel the patient will be more comfortable longer...
my mil has not started yet as we are seeing if the mnd/md society have any that have been donated....we have the proper face mask that fits her, just need the machine now...
yes, we have a relative who is not there much...soem people "run" as they can't bear to see the progression of the disease i think...maybe thats not it tho....who knows...at least you'll know that you were there for your mom every step of the way...that is important...and it will be even moreso as things progress.....feel good about your being such a good daughter...your mom surely appreciates your help. as to depression, my mil has dementia along with the als....and that has progressed a lot...however she is now on zooloft and one other thing to keep her calm and cheerful...it has helped a lot.
hope theres some infor in here you could use...oh yes, we did "not" do the sleep study as her fvc#'s and inspiratory #'s showed already that she needs bipap....the extra test was nopt necessary, especially with her dementia...she is a sundowner and gets very anxious over new surroundings....
hang in there...
sincerely,.
becca
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Old 03-22-2009, 06:01 PM #18 (permalink)
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Thanks Becca, Mom's BiPap has been here now since Monday, first night it lasted 10 minutes with her as "her nose was cold" . So, Tues A.M. I dialed the doctors and now we have a humidifier. She's happier and is using the machine now about 5-6 hours a night, which we believe is good. I am curious how low the FVC numbers are before they mention a ventilator. Seems many people are skirting that question (not here on the forums, but medical professionals thus far).
Sorry it took so long to get back in touch... has been a busy week, have company from out of town and my 10 year old was in a "Destination Imagination" competition yesterday (they won and will be going to state level competition.).
Nice to hear from you.
Mary
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Old 03-23-2009, 03:37 PM #19 (permalink)
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Default answer to question

hello mary,
becca here...we wondered that same thing...when do they switch to the vent? finally we got the answer....it is when they need bipap 24 hours a day...then they go to a vent. at least thats what we were told, maybe someone else on this forum has additional; information...you could always ask and see what answers you get from others. but, as for us, thats what we were told by the doctors just recently. hope that helps.
have a good day. and, hang in there.
sincerely,
becca
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Old 04-25-2009, 07:30 AM #20 (permalink)
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Hi Everyone, I've not posted for more than a month. Lack of time more than interest. My mother is deteriorating quickly, or so it seems to us. When I last posted, she could get up on her own most of the time and walk short distances. Her swallowing now is getting harder, still able to eat, although we notice her selecting softer foods all the time. She is still having a more difficult time with liquids and does better drinking them through a straw. She can no longer get out of bed by herself or up from a chair on her own. We have a hospital bed for her, which has helped as she needs to be sitting up to sleep. She does use the bi-pap every night and struggles with breathing during the day. She has been avoiding using the bi-pap throughout the day as she says it "hurts her nose", so she only puts up with it at night to get rest. Am I wrong in trying to explain to her that by allowing herself to struggle throughout the day that she is expending much needed energy in doing so? We have a clinic visit coming up May 6th and I've recommended to her that we take along her mask so she can show them how it is hurting and fitting and how she puts it on in hopes that they can offer some help in finding a way to make it hurt her less. I have friends and family members alike who keep asking me that inevitable question as to "how long do you think she has?". I obviously have no idea, but do see the steady decline and wonder about it myself. We keep praying she'll not have to suffer long as it is hard for her and for us at the same time. We've attempted asking how low lung capacity goes before they recommend oxygen or a respirator? So far, no clear responses on that one. Maybe it is case by case, patient by patient.
Thanks for listening as always,
Mary
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Old 04-28-2009, 04:30 PM #21 (permalink)
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Default what i have heard

hello there...becca here...i have wondered the same thing and did get an answer to the question...once they need bipap close to 24 hours a day, thats when they switch to a vent...if they don't want that...well then, that would be it. as to how long it takes to get there? you're right, it depends on the person....but, we have found that when our mom takes a turn downward, it is a sudden and big turn down...and we're always surprized...hope this helps...
best wishes...
becca
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Old 05-04-2009, 12:23 PM #22 (permalink)
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Hi Becca,
I believe Mom could use her bipap more than she does, she seems to think she is fighting ALS by resisting it. I've been trying to explain that by struggling to breathe she is exhausting herself faster. We'll see what they say on Wed. at clinic.
More later... almost time to drive the school bus here now. Best wishes to you as well... hugs, Mary
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Old 05-09-2009, 10:20 AM #23 (permalink)
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Hi Everyone, Our clinic visit with Mom was Wednesday. Her lung capacity did not change, which we found surprising since we see her struggle more with breathing in the afternoons and evenings. More weakness in the legs and with swallowing. She was very against a feeding tube, but seems more receptive to it now with it being explained that by having one it could prolong her ability to speak longer.
Any input on that?
The MDA is awesome and the clinic is as well. What a blessing they are to us.

Mary
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Old 05-11-2009, 01:09 PM #24 (permalink)
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Hello

I am new to the forum but her is our story. My wife Marsha was diagnosed in Sept 07. At that time I had never heard of Bulbar onset, and we really didn't hear that from the dr. Once I started reading, it became clear to me that it was Bulbar onset.

Marsha's symptoms started as slurred speech in late spring 07. Then in August her co-workers (Marsha was a Public Health Nurse") called and they were worried she was exhibiting stroke symptons. That started all the visits until the diagnosed.

Our Neurologist has been fantastic and so have the people at the MDA clinics. I have asked about prognosis and get the standard line on how it affects everyone differently.

This is where we are today. Marsha is now totally confined to a wheelchair. She has not been able to speak since fall of 08. We have a Dynavox vmax for most of our communication. We also have hand signals for the car and quick yes/no questions. 1 finger is yes, 2 fingers is no, and if I get the special finger I know I really screwed up! At night after bed, I ask only yes/no questions and she squeezes my fingers for yes, does nothing its a no.

Her swallowing is really compromised and her breathing is at or under 50% She had a PEG tube installed in March. She had refused this for months. I would tell you that delaying the PEG tube was the biggest mistake we have made. The PEG tube has been fantastic for her. Both in medicating and her weightloss has stopped and she seems to have more energy. I wish we had done is sooner. If your Dr. suggests a PEG tube, don't delay it! For us it was an outpatient proceedure. In at 7:00am on way home by noon.

I also feel that Marsha is exhibiting some cognitive impairment now. She had some sort of cognitive function test last week and I have not heard the results yet.l

Luckily I have to strong boys to help with transfers, and we also use a hoyer lift. We have home health aides 4 hrs a day and they use the hoyer lift a lot. Our primary care Dr. suggested we talk to Hospice. Not because we are that close, but to give them a chance to follow us until we need them. Any thoughts on that?

For me, it seems like we are on the ALS express train. Part of me would like to know how long, part of me doesn't. Sometimes I feel like I am failing as a caregiver since I have become numb to some of the emotions. My wife's sisters and a brother are all within 20 miles. I would be going insane if it wasn't for them.

That's our story. Sorry for rambling.

Paul W.
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Old 05-12-2009, 08:15 AM #25 (permalink)
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Default so sorry to hear

hello there...i am so sorry to hear about the diagnosed of your wife. als is a terrible disease...
i especially took note of your comment about being a terrible caregiver because of your feelings.....i am sure you are not terrible at all....
arent you just taking care of business? you have to get into that mode when you deal with all the things that come along.....you obviously love your wife...give yourself a break...its an emotional rollercoaster to say the least....
we all wish you well....take each day as it comes...or as we say.."roll with it" my mil has it...it is hard.
sincerely,
becca
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