1 year in

[Bookay87]

Greetings All, I am a 46 year old Black woman who was diagnosed with Progressive Bulbar Palsy in August 2015. (stressed my race because I haven't ran across many African Americans with this disease and I hope to raise awareness among my race)

My symptoms started slowly I noticed a slurr in my speech around Oct 2014 as months past by December it had gotten more noticeable and while at a speaking engagement I became so winded I couldn't get my words out. A few days later while a work one side of my face went dumb. I ended up 2 days in the hospital being tested for a stroke. They found nothing and sent me to a speech therapist. But I didn't go. a couple of weeks later I went back to my PC and said Look something is wrong and it is'nt that I cant talk. Why can't I talk in my normal matter and I'm tired all the time. She sent me to a ENT who sent me to a neurologist at VCU.

They did the EMG and everything looked fine. He initially diagnosed me with MG and put me on presidone. In June I caught a cold and ended up back in the hospital for 5 days. I had breathing issues and was choking on everything and had the worst heartburn. There ran further test there and in August I received the diagnosis of PBP/ALS. I had a 2nd EMG done at John Hopkins and those Drs concluded the same thing.

HOWEVER I have faith and maybe thats my diagnose but is not going to consume me. My boys are grown and live away from me in Florida. I have my mom and sister and great friends and WE ARE ALL FIGHTING. In November I completely changed my diet. I cut out all processed foods and sugars. Yes I lost 20 lbs I was 199 (i'm 5'5.. I could stand to lose a few . My Dr's werent happy but guess what ... the bloating and heartburn disappeared bye bye meds..and my energy returned. And I don't choke unless I drink to fast or put to much food in my mouth.

I do have some weakness in my left hand that comes and goes. I'm am taking the Nudexa and Rilulze too. The Nudexa helps my tongue movement. I'm not biting it nearly as often. I run 2 miles 4 days a week and I do weights 3 days. My weight has been holding at 173. I recently read a book called Eric is Winning and it has inspired me to look at nutrition in a ways to heal. Thanks for reading my story and I look forward to learning about this disease and fighting with all I have. Be Blessed

 

[KimT]

Hi Bookay,
It sounds like you are being very proactive. We all have different methods of dealing with this disease....I'm glad your energy returned! Best wishes in your fight.
Kim

 

[Atsugi]

Greetings All,... Thanks for reading my story and I look forward to learning about this disease and fighting with all I have. Be Blessed

Thanks for the story Bookay. Very interesting.

 

[Nuts]

Welcome, Bookay. Good nutrition is always a plus, just so long as you control that weight loss (we've been cautioned that sometimes when it starts it's hard to stop).

Welcome to our little party!
Becky

 

[Bookay87]

Thanks Kim

 

[KatB]

Bookay, I too have PBP, I started with slurring as well. But after looking back 4 months prior to the slurring starting, being so exhausted and out of breath when exerting myself, there were other signs for me I didn't see as a symptom of what was to follow.

My slurring started in Jan 0f 2014 it took until Feb of 2015 for me to get my diagnosis. I'm 2 years in and have been doing Alternative therapies the whole time. I was a mess with too many symptoms to list, mushy scalp, mucus filled poop and diet, acupuncture and herbs have really helped me. Everything I have run across has helped to some degree, some I continue to do some I have stopped. But I have learned a lot.

The most important thing I've learned Bookay is the diet part. There is no half doing this, it's all or nothing; no sugar, no fruit, no dairy, no alcohol, no white flour, no ice (cold foods or drink messes with digestion) very little to no grains. I'm currently in a full blown detox, with lethargy, smells coming from this body that no fart can match. It has been over a week and I'm finally coming around, feeling better and not smelling as bad, it may take more time but I'm seeing the light at the end of not knowing if I could do this but I AM. Glad to have you on board!!

 

[Bookay87]

Hi KatB thanks for the message. How is your detox going. How is your weight are you concerned? I'm interesting in trying acupuncture. I don't do many supplements as I wasn't sure of what to try. My doctor just recently ran test on my vitamin d and b levels and b6 is high D is low. Can you share more of what you were going through and what has improved. My speech has gotten worse. How is yours?

 

[KatB]

You are welcome! my detox was a real trip, I have been slowly detoxing for over a year now, off & on, testing the waters so to speak. Learning it can't be tested, as soon as i thought it was ok to have a little sugar or white flour, i realized i have to start all over again. I started learning about frequency & how it can help your body heal, called True Rife. So i started treatments using frequency. This sped up the process. I had 5, 3 hr sessions 5 days apart. The first session my tongue felt different & i could move it easier, nothing huge just noticeable. Each session was some small improvement, throat less restricted, neck ROM improved, etc. By the end of my 5th session i had a horrible odor coming from my body, i was so sleepy, i would sleep in later than usual, have breakfast then go back to bed. i watched TV, napped, ate, eliminated waste & it lasted for about 10 days. The odor is gone, i am awake and feeling much better.

You asked about my weight, i'm down a couple more pounds but i have brought it back up in the past, if i get off my schedule with feedings it shows, I just have to make up for missed calories.

if you do consider acupuncture , look for a 5 Element Theory acupuncturist that has herbs too.

i have done vitamins for a long time but don't advise people on what to take but found a group on Face Book called Whole Body Healing for ALS that might interest you.

My speech is gone, has been for a year now. I try but it's harder to understand than made up sign language haha. Sorry to hear your speech is getting worse if it's recognizable, get it banked for your speech generator.

take care & let us know how it's going. anything I can do to help.

 

[Bookay87]

This thing is so strange. Last night I recorded myself talking as I do from time to time to see if I'm getting worse. I talked for a full 2 minutes without drooling and every word was understandable. Today I'm typing using all of my fingers in the correct fashion. I hate to get excited because who knows what tomorrow will bring.