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rocmg:

I am also sorry about your mom's fall and I worry about a possible concussion (since you said it was a nasty hit). Do you think she needs to be checked?
 
thanks thelma and vmd... it was a bad knock and a big shock, although i think that the fact that it happened was just more devastating than the actual event, if you know what I mean? thank you for your concern and stay well.
 
Hi Group,
Mums speech slurring started in March 08, when dad had noticed (mum& dad have been separated for 10 years now) and mentioned to my brother and I - we hadn't noticed, went back into the party we had for my daughter and asked others if they had noticed, and they all said yes! Since then mum's speech has rapidly declined where she is now trying to use a lightwriter or a notepad for her speech, with only one or two words being noticable, usually in the mornings. Her walking is now effected, and this week alone she has had about 4-5 falls - her stubborness has now wained and she is using the walker rather than just her cane! We think her arms are starting to be effected as she cannot lift anything too heavy - including a 3 litre milk, or bag of dog food for example and her writing is starting to get abit worse. She has also had the emotional lability thing since at least last October, so really only a year on, and I think she has gone down hill very quickly. I get sad when she tries to give my 9mth old a kiss and she cant close her mouth to do it! It just gives me a prompt about how precious time is with family!
I do hope your mum is OK after her fall, as I understand how the confidence can be dented immensely.
 
I was diagnosed in December-Jan'09 Progessive Bulbar Palsy possible ALS, but they are treating me for ALS at Mayo. I would say a year or more ago I started noticing things. Had a lump in my throat and some trouble swallowing. Then started speech problems, very slight at first. Finally went to ENT who said I had gerd. Gave me Aciphex. Went downhill from there. Saw another Dr. who didn't know what was going on so ordered an MRI but couldn't get it for a week. My husband has a friend who is a Dr. so he called him and I was in to a Neuro the next day. Had the MRI and EMG and Nerve tests. He didn't think it was ALS but my B-12 levels were low so I went to hemotologist for B-12 injections. He said it wasn't the cause for my symptoms and sent me to Mayo. More tests and diagnosed was PBP.
At present, my speech has deteriorated some. I notice it more than others. But, as I told my daughter, everyone is getting used to me sounding like I do so they think it is still pretty good. I told her that when I think, I still think in my old voice, so I have a constant comparison. Some days it is pretty bad and others not so bad, but still noticible. I have had a few meltdowns over it, but everything else is still ok. Limbs seem fine, although from what I understand it creeps up on you and before you know it. BAM! But all in all, I am not too bad. Hell I shot 86 Sunday golfing. My drives are longer than they have ever been and my irons are cooperating very well. My goal is to break 80 by the end of the summer. Wish me luck. This is an important goal to me. Wherever this disease takes me I have to go, but damn, I want to go knowing I shot in the 70's before it really got me.
NancyS
 
Hi everyone!

I thought my first symptoms were slurred speech and fatigue in 11/2008. When I had my first ALS clinic appt at Northwestern in Chicago, when the doctor went to check my gag reflex, he mentioned it's probably hyperactive. I told him "no" - I had no gag reflex, which he confirmed. After we left it dawned on me! I had a hyperactive gag relex since probably the beginning of 2008. I would gag when I would brush my teeth. I never sought medical attention as I did not see this as a health issue.

Now, when I was admitted to the hospital in 11/2008 due to the slurred speech, I was started on Lipitor for a mild cholesterol elevation. My diagnosis then was MG vs bulbar ALS, By Jan 2009, I was soooo weak and could barely get out of bed... I made a decision to stop the Lipitor as I kept hearing on tv how it can contribute to muscle weakness. After a few weeks, I was so much improved.

Now my legs are mildly weak, I have trouble getting up from a crouched postion, and stairs are noticeably harder. I walk every other day anywhere from 2 to 3 miles. My speech is a bit hard to understand but those close to me can still get what I am saying after the guessing game!

We will driving to Washington DC next week for the ALS advocacy conference. Anyone else going?:lol:
 
Vickster and Gethling, welcome to the forum :)

rocmg, I posted my history for you, mainly because I still question if I'm truly bulbar onset. It just does not make sense if my first affected area is the bulbar, for the leg and hand stuff I described to be going on beforehand, but yet, my first EMG of limbs was normal, (however, my reflexes brisk.) Just don't know.

Also, it may be true that doctors are more hesitant over here to diagnose the PBP, but I think much of what caused the delay in my case was that it was my voice, rather than my speech which was affected first.

Irregardless of what type of onset I have, I thought it should be a reassurance to you that I am still doing as well as I am. Whether one looks at onset to be late 2005/ early 2006 (with my leg cramps) or late 2006 (with my voice) , it is still many months past that now, and I'm still around and pretty much independent.
 
Hi Roisin, Just read about your mums fall. Was she going from Kneeling to standing? Im not sure in the post?Maybe it wasnt weakness in her legs but weakness in general or her arms or back. My mums weakness started in her hands, they were worst affected. Her speech was slurred in the last few months, but we could understand her, sometimes it was difficult for others and sometimes her friends would have to call me to see what she said, as I could understand her a little better. Her legs became weak and she had a few scary falls, but she still insisted on walking, she said the day she stopped walking was the day she would never leave the house again, she told me that this would depress her so much it would kill her, and so we continued to walk around the house, using me as her walker, and used the wheelchair when we left the house. Some mornings I would practically be carrying her to the bathroom, but she thought she was doing it herself and made her feel a little independent.
As you know my mum didnt want to move her bedroom downstairs, she said the day her bed was downstairs she would never get up again, she said she never wanted morphine either. On the day she died, she was in her own bed upstairs. The builders had been there for 4 weeks doing her bathroom and bedroom downstairs, they only had 2 days left and it would be finished, she never seen it. She had said she never wanted morphine, and in the hours of her passing the nurse had suggested the morphine, we waited as she gave her a relaxer instead, hours later we were about to attach the drip of morphine when my mother passed. The hospice nurse said she never seen anybody go so peacefully and without it. I just thought, well thats my mother, "stubborn to the end" She got to do everything her way, even when we were about to change it on her.Im glad of that now.
What im trying to say is, if she wants to walk and fall, let her.
If she wants to eat and choke, let her. Dignity and independence means so much to Mothers in general, but with this disease its so important. My thoughts are always with you.
 
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