Anybody out there with slowly progressing PBP?

[anne]

Hi...I have been very lucky that my mother has not lost any weight since she was offically diagnosed on June 27, 06. My mom cannot drink water at all. If she does she puts a thickner into the water. She really hates the taste of that however she will use it to take her medications. Also she drinks coffee in the morning and she puts broken pieces of arrow root or diagestive cookies into it. She drinks alot of fruit necters because they are thicker than regular juice. She will also drink one bottle of Boost per day. They come in all different flavours. I think they are soya based. She is also drinking Soya Milk. My mother was never a milk drinker in the past but finds for now she likes the Soya Milk.
She eats two meals per day. I have gotten her to use a crock pot because it makes the food softer. She has been enjoying some of the recipes that I have given her for that. She also has a few small pieces of cheese cake per day. We purchase a cheesecake that has no bottom crust so she is able to eat that.

My mother's tongue is not working very well but thankfully she can still eat.
We attend an ALS clinic in Toronto and they keep pushing the Tube issue with us. Unfortunately my mother is not interested in that. She is very upset that her voice has been taken away from her and she does not want the joy of eating to be also taken from her. Perhaps at somepoint we may have to make a decision about the tube but she is not ready for it now. She weighs 129lb and has been that weight for years so hopefully we will be able to keep her weight up.

I am sorry that this post is somewhat lengthy but I hope it is helpful to you. Anne

 

[Al]

Hey anne. Say what you have to say. We don't worry about length here. If you have something valuable like this we can afford the time to read it. AL.

 

[jo aust]

To 'granny'. You are not alone. . My mum has been diagnosed with pbp just last month although she has had it now for a year. She is 64 years young. In a matter of weeks she will have no voice left. Only very few of us can understand her now. We treasure each word she says and I can't wait to visit her next week. She just had peg put in and the first thing she asked the surgeon was "when can I swim?" We are sailing the Whitsunday Island next month. Jo

 

[kimjay]

I am new to this so I hope it works! I am 44 yo and was diganosed with PBP in May 06. I think mine is progressing relatively slowly. I first realised something was wrong around 15 months ago when the odd word slurred. No one noticed for a long time. I have had to give up my part time job lecturing, as my speech has got worse, but continue to this day working as an interior designer - making telephone calls, speaking to suppliers and meeting with clients. It is however, becoming more difficult to function at work and I feel as though I want to leave soon to get on with the things I like doing. So far, I have little (it is a bit diffiult to move food around my mouth) to no trouble eating or drinking and have never choked. My lung function test conducted 5 months ago came back 'normal' and I have full use of my arms and legs.

It is difficult to know how I am progressing as I am constantly being told everyone is different. The only advice I have to anyone with MND/ALS is to listen to your body. I make no apologies for slowing down and resting when I'm tired or refusing to speak when it becomes too difficult. I do try to eat well and exercise regularly.

The one thing I have learned is that you have to make your own way. There are no markers.
Thank you for this forum. Sometimes it's difficult to tell my husband how I'm feeling physically and emotionally as I know how much my condition upsets him. He is extremely supportive and cannot do enough for me, but it's the ones closest to you who hurt the most. Kim

 

[Pearl]

Someone asked about drinks - my friend is giving her huband carnation chocolate milk but is using half and half instead of milk. Sounds gross to me, but he drinks it - he has gained weight.

Those shakes at Chick Filet (fast food, chicken restaurant) have nearly 800 calories.

Of course, we say that he'll die of clogged arteries before the ALS at this rate....

 

[Fortune]

Progressing

Hello To All,
My PBP diagnosed is less than a month old, but a lot has happened. Best of all is finding this Forum because I've learned so much from people with similar experiences. My speech and swallowing have become more difficult. Drinking thin liquids makes me choke and cough if I don't tilt my head down. Using a straw helps as long as I take small sips. Since my tongue is weak, I can't move chewed food around in my mouth very well and recently I've had difficulty getting food unstuck that's already in my throat. I've lost 25 lbs. since Aug. Whether it's nasal, oral or surgical, I dread the thought of using a feeding tube.
I'm on the waiting list to see the speech pathologist who specializes in augmentative devices. I'm already carrying a notepad and I use gestures. I've even reduced my communication to basic nouns and verbs, but as my dysarthria worsens, fewer people take the time and effort to understand. I used to enjoy social occasions, even striking up conversations with strangers which is perfectly acceptable for a 68 year old. Now I'm reduced to joining a life threatening desease support group.
The good news is that the ALS center in nearby San Francisco is looking for participants to join research studies looking at the risk factors contributing to ALS and the effectiveness of Ritonavir and Hydroxyurea on ALS. Good news for the future perhaps.
God Bless, Fortune

 

[Al]

Hi Fortune. I saw the operation to put in a PEG or feeding tube once and it's not that big of a deal. I think a vasectomy was a bigger deal. You should seriously consider having it done before you lose too much weight because that makes you weaker and makes more chance for infection or complications. The augmentative devices make it relatively easy to communicate with. They aren't perfect but get the job done. It certainly is a time for transition just getting older but with this it can seem overwhelming to you. Take it a day at a time. Hopefully we'll get lucky and get lots of time. AL.

 

[Lynn555]

slowly progressing pbp

Hi, I'm new. My mother, who is 79, has very slowly progressing progressive bulbar palsy. I also did a lot of research on the internet, and pbp is said to be very fast progressing. But it's very slow with my mother. She started having speech problems 8 years ago, where she started to slur her words and had problems with any words with 2 syllables or more. Over the years it got harder and harder for her to speak clearly. It came out more and more garbled, and she would speak slower and slower. She went to speech therapists and had all kinds of tests. Then over the past few years she's had trouble eating and chewing. She has now lost almost complete use of her tongue. Now you can't understand her speech at all, she has to write things down. She can still eat very soft foods - like egg salad or oatmeal or tuna, and she drinks a lot of Ensure Plus. She has lost around 40 lbs. She finally got diagnosed with pbp by the Mayo Clinic in Nov. 2006. She does not have a feeding tube yet, as she still can swallow, and she's trying to keep up her nutrition. So it's very slowly progressing - 8 years from onset of symptoms, she still can swallow okay, she has no fasciculations at this time, and no significant weakness in her limbs. But her handwriting has changed. But it's mostly affected just talking and chewing. So this can be very slowly progressing with some people.

 

[anne]

Hi Lynn....Welcome.. Just want to let you know that you are not alone here. I am glad for you and your mom that she has progressed slowly. Life becomes very difficult with this illness. Feel free to ask any questions, there is always someone that has great advise. God Bless. Anne

 

[Lynn555]

Drooling

Thank you so much, you are so sweet and supportive, and I really appreciate it. My mother has been having trouble with drooling, and she's embarrassed to eat in front of people, as she drools a lot and is now a messy eater, as much of it ends up all over her chin. She is on 2 meds - Rilutek (I think that's what it is) and Elavil (for depression, but a side effect is drying up excess saliva). But she still drools a lot. Has anyone else found anything that helps with this? Someone told us to try putting some meat tenderizer under her tongue, but we're afraid to try that. Has anyone heard of that or tried that? Thank you!

 

[anne]

Hi Lynn....everything that you have mentioned about your mom is exactly what my mom is going through. My mom cannot speak anymore. she writes things down for us if we cannot understand. She take Rilutek and Elavil. She was taking 60 mg of elavil and still drooling terribly. We increased it to 75 and the drooling decreased very very little but she feels that her mouth feels dry but still drooling. Her swallowing is now very bad and she decided on Christmas eve that it is time for a feeding tube. Christmas was a disaster at my house. She was eating her pureed food and doing really well. She then got up heading for the bathroom and had a panic attack because she could not catch her breath. It was really scary. It took her 10 minutes to recover from this. I think the eating infront of us was too stressful for her. We were told about the meat tenderizer and did try it but it did not help we also tried Transderm V patches which are used for motion sickness. You place them behind the ear. You can give them a try.

Keep in touch. Anne

 

[patricia1]

Hi I am reading this site and my symptoms are more like pbp but I was told I have Als because it is starting to go into my arms very bad in my arms just starting a year ago I was diagnosed with ALS in 03 But I have been having slurred speech since 99 and I eat fine I have to be carefull with liguids sometimes however I am otherwise good So whats with that. Pat:?:

 

[Lynn555]

pbp

Hi Pat, I'm sorry you're going through all that. From what I've heard, it's extremely rare for pbp to stay just bulbar, that it almost always progresses to ALS where the limbs are also affected. But it's different for everyone. The progression may be faster or slower, or it may hit some areas harder than others - such as tongue more than legs, or legs more than arms, or right side more than left, etc. Yours seems like it started as pbp but moved into ALS, which is fairly typical. It sounds like you started with bulbar involvement, but you have not completely lost the ability to eat or speak. And once the limbs are involved, the diagnosis becomes ALS. I'm glad you can eat fine, that is a really good thing for you. With liquids, I've heard that thicker liquids can be easier to swallow than thin. So something like V-8 juice or a milk shake might be easier to swallow than water. Also try taking very small sips and bending your head forward when you swallow. I've heard that helps, too. It sounds like you have good days and bad days, too, which is typical. I hope this helps and I wish you lots of good days!

 

[patricia1]

Lynn Thanks so much for your imput your sweet. I wish us all good days and a good cure Pat