New CAL

[Kristy84slp]

Hi my name isKristen and my dad was diagnosed with bulbar ALS on September 7th of this year. It's a new diagnosis for our family as we had previously thought he had myasthenia gravis but his symptoms have been getting progressively worse. Both my sister and I are speech therapists and I specialize in communication and swallowing disorders though I have mostly worked with stroke patients, Parkinson's disease, Alzheimer's and brain injury (i.e. Not ALS). This diagnosis is very new though with bulbar symptoms he is progressing quickly. This is my first experience as a caregiver/daughter first and therapist second. Needless to say we are heartbroken and devastated by this new diagnosis. We are not prepared to lose him.

 

[Atsugi]

I'm really sorry your Dad is diagnosed.

Are you living close to him?

 

[affected]

So sorry for your dad's diagnosis.

As as CALS you will find you need to step back into your role as speechie and try to be objective as you help him, that won't be easy. You will find lots of support here.

 

[scaredwifetx]

I am so sorry about your dads diagnosis. There is wonderful medical and emotional support here. I have to say that I learn more here than from any of the doctors or clinics. a strong support system with family and friends is so important. My thought are with you and your family.

 

[Nuts]

Welcome, Kristy. You will find a great deal of support and information here. Have you seen the stickies at the top of the general discussion area? They provide a lot of information gathered by members here.

This is a devastating diagnosis. I am so sorry. Is your dad being seen in a multidisciplinary ALS clinic where he is seen by multiple specialties during the same visit? We love that arrangement and always come away with good information and help.

Again, welcome. COme often and ask questions, vent, or just talk. There is almost always someone awake.

Becky

 

[Narrowminded]

Hi Kristy and welcome. I'm sorry that you need to find yourself here, but as other have said, this is a great place. It has been a huge support for me and I hope you find it that was as well. Come, sit, vent, cry, scream, holler. We are all here for you in just about any way you might need. Also remember that everyone's time line for this disease is different. Some are very quick, others more slow and then further decisions can impact that as well.

Hugs,

Sue

 

[soonerwife]

So sorry to hear of your dad's dx. Feel free to ask question or vent anytime. We are here and understand!

 

[Kristy84slp]

I appreciate the support. I live in Jacksonville Fl and he lives in Tampa, Fl approx 3.5 hrs away. My mom and sister live with him and I come down on weekends. It will be difficult to stop thinking clinically and just be his daughter when all I want to do is fix it. I can't fix it. Dealing with depression that comes along with this diagnosis is tough. When you stop thinking clinically and start just being a family you have to feel all the hurt.

 

[vltsra]

Dear Kristen, I'm sorry to welcome you here. My husband was diagnosed almost a year ago. It is very sad to see someone you love suffering. I am taking a low dose of Zoloft, which helps me to focus and makes the sadness less overwhelming. Also, this forum has been a lifesaver, you will find many kind and understanding people here; no one else can relate in quite the same way.

V

 

[Aussiemndcarer]

Dear Kristen,
Welcome! I wish you strength in your journey. Our youngest son is a Doctor ( 3 years out) and lives a long way away, but still in our state.
At first I'm sure that it was so difficult to separate his clinical way of looking at things from just being a son! Now,he seems to be more at ease.he visits as often as can be ( involves flying and a 3.5 hr drive). The ALS journey is just so difficult for all in the family. I do hope that you find comfort here on this forum. I do and I live across the world from most of you, but I feel most welcome on line.

 

[FamilialALS?]

I'm sorry about your dad's diagnosis Kristen. My mom was bulbar onset as well. This disease is so all consuming that being a support to your family is essential.

I completely understand the sense of grief you are feeling right now and it is normal. I cried almost daily for the first three months and then you come to a level of acceptance and press on. It's never easy but you do adjust to the changing realities of what this disease brings.

Coming to this site for info, questions, and support was the best resource for me to manage it all. We look forward to helping support you as well.

 

[lgelb]

Hi, Kristen, sorry you find yourself here, and welcome. I too experienced a family member developing a disease within my professional scope. I think a key is to use the professional part when it's helpful and bury it when it's not.

Best,
Laurie