Newly Diagnosed (Bulbar Onset)

[Katy Sunshine]

Hi all, I'm Katy As much as I love new groups, I really wish this is one I didn't have to become a member of. No offense to all you great people. After about a year or so of slurred speech and my voice being reduced to a hoarse whisper, my GP sending me to a neurologist and months of testing (x-rays, blood work, MRI's, CT scans, NCS's and EMG's twice, and your in-office neurological tests) I was diagnosed with Bulbar Onset ALS on February 3rd of this year. We sort of knew this was coming, so it wasn't a great surprise.

During these months of tests I've had other symptoms to add in addition to the worsening speech. Choking on food and liquid, shortness of breath, waking up feeling as if I'm being smothered, and an over-production of saliva (put on Rubinol.) The day I was diagnosed he started me on Rilutek. I don't know if it's just wishful thinking, but it seems my speech is getting a little better.

A couple of weird things... I've noticed many, many times that I've had food or liquid in my mouth and have completely forgotten to chew and swallow. Also, my tongue will be blocking my airway and I'll have to make a concerted effort to remove it. There will be this audible "pop" when I finally get it unstuck. Other than a slight tremor in my right hand on occasion, some severe muscle cramping in my hands and feet, I have absolutely no symptoms in my arms and legs. So, I guess I have no questions in this regard. My questions are primarily about support systems.

A little bit about me and I promise to try and be as brief as I can. I'm 50 years old. I live in Panama City Beach, Florida with my boyfriend of 4 years. We moved here a year and a half ago for his job. Because of the high cost of living and my inability to work he has to work a great deal. So, I'm here far too often alone. I have no family anywhere. I'm an only child, both parents are deceased and I've no children. I've been on disability since 2002 because of a previous condition. I had Arnold Chiari Malformation, with Syringo-myelia. I was in a wheelchair for a number of years because of the spasticity in my legs. After a decompression of the posterior fossa surgery, years of PT and medications that problem was resolved, but not before I'd lost quite a bit of vision and hearing that I'll never get back.

Anyway... My boyfriend's family lives in another state. I don't drive, obviously. The nearest support group is 5 and 1/2 hours away in Tampa. The decline in my speech has caused me to become quite anti-social over the last year. I know no one here in PCB. I'm so self conscious about the speech thing and there seems to be far too many people who stop listening when you can't communicate well. I've even had people think I'm drunk which is a real confidence killer. I do have friends on Facebook who know what I'm facing and they're very supportive, but none live nearby. So, most the time I'm here alone and it's frustrating and scary. There's no one that really knows what this is like.

As bad as all of this sounds, I'm not looking for pity, just some guidance on where to go from here. I know there are these forums and they help a great deal, that's why I'm here. I don't have to feel embarrassed about the way I talk, which is awesome, but I don't know what to do about feeling as if I am alone in this. I'd so appreciate any advice y'all might have.

Thanks so much,
Katy

 

[lgelb]

Welcome, Katy, and sorry for all you have faced and are dealing with now. My husband also had significant deficits from another illness pre-ALS so I understand a little bit.

Is your office or clinic discussing BiPAP and a feeding tube with you? Is there a social worker there who can discuss programs/benefits for which you're eligible? Our Florida members can do better than I on that.

Do you have a smart phone with an app that can generate speech for you? If money's an issue, most states have assistive technology loan closets/grants. This is Florida's.

Are you filing for Medicare/SSI? Have you talked with the ALSA/MDA there?

Keep posting (note the PALS check-in thread also) and we'll help however we can. And no, you didn't need to hit the say hello thread first. This was fine!

Best,
Laurie

 

[Nikki J]

Hi Katy. Sorry you are here but you are among friends. Sounds like you are already expert in dealing with challenges.

Were you offered nuedexta? It is a medicine for emotional lability / PBA but PALS have reported for a while it seems to help bulbar symptoms for a while. A recent clinical trial supported that It is not a miracle but it seems to help.

Looking forward to getting to know you!

 

[Katy Sunshine]

Hi Laurie, thank you so much for responding. I am already on SSI/Medicaid. I have been since 2002 because of the ACM problem. So, thankfully I do not have to deal with all of that red tape. I registered with the Florida chapter ALSA. I received a phone call from a nice lady who said they could help me, but I'd have to have a second opinion from the Mayo Clinic in Jacksonville (4 hour drive) before they could help. I don't know when or how I'd be able to do that. First because of the financial reasons and second I just don't travel well. (Back when they were doing my MRI's they found a bulging disc in the lumbar area and I have DDD in my neck, which was/is giving me quite a bit of pain. In addition to the anxiety of leaving the house for an extended period of time, a long car ride would be unbearable.)

As far as the BiPap and feeding tube, yes, my doctor discussed this briefly with me. I was a little speechless, even with knowing it might be ALS. I just wanted to leave his office and return to my home... my sanctuary. I see him again on Wednesday (Mar 02) and I've actually written down questions and concerns I have, and other things that are bothersome to me, so that I won't forget.

I have no idea who my social worker is with Florida DFS, but I'm sure it won't be a problem finding out. I never considered that, so thank you for that tip. I have a cellphone, but it's not a smart phone. It's one that if you are low income you can get for free. It's very limited in it's technology and I only use it to have in case of emergencies. I will, however, look into the link you provided.

I'd like to say how grateful I am that I've found this place and all of you. As soon as I saw that someone had responded I immediately felt a little less alone. So, thank you so much for welcoming me and giving me hope that I'm not doing this by myself. Thank you, too, for the information.

Sincerely,
Katy

 

[Katy Sunshine]

Hi Nikki,

Thank you for the warm welcome. Nice to be among friends. I have become quite a pro at dealing with what life has tossed at me. I lost both of my parents to quick battles with colon cancer. My mother was a year younger than I am now. That was back in 1996, the year before I was diagnosed with ACM. I lost my father 4 years ago. The year before that my husband of 25 years had a massive heart attack and I lost him as well. All of these losses have been devastating, but I've never given up. There's been a time or two that I wanted to, believe me.

Even through all of that, along with this Dx, the good times in my life have far outweighed the bad and I hold on to that. Hopefully I will feel better and be able to make some more good memories.

I've not discussed Neudexta with the doc yet, but thank you for the tip. I've written it on my list of things to discuss with him on Wednesday.

Thank you so much for responding. I really do appreciate it.

Sincerely,
Katy

 

[fionae]

Hi Katy...

I am sorry to be welcoming you here, but you are welcomed.
Thank you for telling us about yourself, and for expressing your
concerns, feelings, and experiences so thoughtfully.

I, too, have overwhelmingly bulbar symptoms, so I can relate
to much of what you have experienced with this disease.
There are many of us here who deal with the bulbar symptoms
on a daily basis.

I am glad you found us.
Remember, you are NOT alone in this.

Best,
Laura.

 

[Katy Sunshine]

Hi Laura,

Thank you for the welcome. It's unbelievable that so many are afflicted with/by this horrible disease in one manner or another. I had no idea! Even though it's uplifting to know I'm no longer alone in this, it saddens me to know that so many are facing it.

I've been a writer for most of my life, published in some manner or other over the years, so my biggest comfort is my ability to express myself in this way, even though I cannot verbally. I cling to that with every fiber of my being.

I'm so sorry that you have to be here, as well. This is such a vast area with so much to take in. Perhaps you could recommend some specific spots that might help me. I'd really appreciate that.

Thank you again for the welcome.

Sincerely,
Katy

 

[Nikki J]

Quick note on nuedexta. I do not think it has an approved indication yet for slowing bulbar as the study was only recently reported. It is expensive so insurances often have prior authorization requirements and will approve it for emotional lability. PALS have been know to ...exaggerate that symptom. Just fyi

 

[KimT]

Hi Laurie, thank you so much for responding. I am already on SSI/Medicaid. I have been since 2002 because of the ACM problem. So, thankfully I do not have to deal with all of that red tape. I registered with the Florida chapter ALSA. I received a phone call from a nice lady who said they could help me, but I'd have to have a second opinion from the Mayo Clinic in Jacksonville (4 hour drive) before they could help. I don't know when or how I'd be able to do that. First because of the financial reasons and second I just don't travel well. (Back when they were doing my MRI's they found a bulging disc in the lumbar area and I have DDD in my neck, which was/is giving me quite a bit of pain. In addition to the anxiety of leaving the house for an extended period of time, a long car ride would be unbearable.)

As far as the BiPap and feeding tube, yes, my doctor discussed this briefly with me. I was a little speechless, even with knowing it might be ALS. I just wanted to leave his office and return to my home... my sanctuary. I see him again on Wednesday (Mar 02) and I've actually written down questions and concerns I have, and other things that are bothersome to me, so that I won't forget.

I have no idea who my social worker is with Florida DFS, but I'm sure it won't be a problem finding out. I never considered that, so thank you for that tip. I have a cellphone, but it's not a smart phone. It's one that if you are low income you can get for free. It's very limited in it's technology and I only use it to have in case of emergencies. I will, however, look into the link you provided.

I'd like to say how grateful I am that I've found this place and all of you. As soon as I saw that someone had responded I immediately felt a little less alone. So, thank you so much for welcoming me and giving me hope that I'm not doing this by myself. Thank you, too, for the information.

Sincerely,
Katy

Hi Katy,

I'm sorry for all you've been through and all those people you lost. I take exception with the woman from ALSA. Why did she say Mayo Clinic? What about someone in Panama City who has had experience in dx ALS. Dr. Jack Shumate, Neurologist in Panama City, FL | US News Doctors Here's one who does. The other option is sending your records to Mayo or Shands in Jacksonville and see if they will do a consult with your regular neuro. I would understand her position if you had very few symptoms but you don't!

 

[Katy Sunshine]

Hi Laurie,

I'm not quite sure why it had to be the Mayo, specifically. She said the doctor there was their 2nd opinion doctor? After she said Jacksonville, I sort of stopped listening because I knew it wasn't happening. My neurologist offered me a referral for a second opinion, I'll talk to him about a someone who specializes in ALS locally when I see him Wednesday. I really like my doctor, he's informative and helpful and I have a great respect for him. Do you think I'll be able to keep him after I get the second opinion? I hope so.

Thank you for responding.

Sincerely,
Katy

 

[Katy Sunshine]

Sorry, that last post should have been to Kim.

 

[pittsburghgal]

Hi Katy,
I am sorry to hear about all the difficult challenges that you have faced in the past and are facing now.

I am concerned about your choking when eating or drinking because you sound like you are at risk for aspiration. My husband had 3 episodes of aspiration pneumonia and almost did not survive. Are you near any hospital where you could get a modified barium swallow to test your swallowing ability? I agree with other comments that you should consider a feeding tube soon.

Sharon

 

[Katy Sunshine]

Hi Katy,
I am sorry to hear about all the difficult challenges that you have faced in the past and are facing now.

I am concerned about your choking when eating or drinking because you sound like you are at risk for aspiration. My husband had 3 episodes of aspiration pneumonia and almost did not survive. Are you near any hospital where you could get a modified barium swallow to test your swallowing ability? I agree with other comments that you should consider a feeding tube soon.

Sharon

Hi Sharon,

Thank you. Yes, I'm near a hospital. I had a Barium Swallow about 6 months ago, and things were pretty good. Some things have changed in the months since then. I suppose it's time for another. When I see my doctor on Wednesday this problem is something we'll address. It's at the top of my list.

Thank you so much for responding. I have so many questions for all of you. I'll hold off for a bit, though.
Sincerely,
Katy

 

[KimT]

Hi Laurie,

I'm not quite sure why it had to be the Mayo, specifically. She said the doctor there was their 2nd opinion doctor? After she said Jacksonville, I sort of stopped listening because I knew it wasn't happening. My neurologist offered me a referral for a second opinion, I'll talk to him about a someone who specializes in ALS locally when I see him Wednesday. I really like my doctor, he's informative and helpful and I have a great respect for him. Do you think I'll be able to keep him after I get the second opinion? I hope so.

Thank you for responding.

Sincerely,
Katy

Katy, You can keep any doctor you want but you should get a second opinion from someone who specializes in MND. I kept my local neurologist because he's available quickly, is only a couple of miles away and will write an Rx for whatever I need. I still go to Jacksonville because I don't want to miss out on any clinical trial or new information but I still have all my regular doctors here. I've had my local neurologist since 2000 when I had a car accident. It's still pretty new to me and, living alone, has made it hard to get through all the financial decisions.

 

[AnnMarie]

Hi Katy,

Sorry to welcome you here, and for all the difficulties you have had in the past.

I also am diagnosed with bulbar onset, and although was prepared for this diagnosis it was still overwhelming to hear them say it.

If you are having difficulties with swallowing, I would strongly urge you to be proactive and have a feeding tube placed. I did and it was one of the best decisions I made.

I agree with Laurie, if you could obtain a device with a text to speech app it is so helpful. I use mine all time and has enabled me to participate in conversations or at a register etc. I signal to the person I can not talk and use the app. It has given me some independence

You will find extremely knowledgable, helpful, supportive and caring people here.