Slurred speech only symptom

[Clever Girl]

My father has been diagnosed with ALS within the last 2 months. I'm temporarily relocated across the globe from my parents. The distance has been difficult leaving the only option for discussion via phone primarily with my distraught mother. I hide my fears so she can outlet hers - since she has to hide her fears around the rest of the family back home ...

Wow! I do actually have a question: My mother says that my 77 year old father's only symptom is his slurred speech which has worsened in the last 4 months and is what drove them to the doctor's offices, followed by all the endless tests, in the first place.

Has anyone else heard of or experienced slurred speech being the only symptom at the onset?

Thanks for being there.

 

[seattle86]

Yes. Bulbar onset usually starts with slurred speech only. It progresses from there. Sorry to here about your father.

 

[rachelg]

Hi

Sorry to hear about your dad.

My husband who was recently diagnosed with PBP started with slurred speech only about 10 months ago. This was his only symptom until a few months ago when he started to struggle with chewing then swallowing and choking. He is due to have a PEG at the end of the month.

 

[thelma313]

Hi, so sorry to hear of your dad's diagnosis. My father also started with slurred speech. It was another 6 or 7 months before he developed drop foot but he had been experiencing leg cramps during the night for a while before that. He said he would get charlie horses in his calves very often and it hurt like hell. He was diagnosed in August and today he has a lot of trouble walking, wears orthotics on both ankles and uses a cane but every case is different so perhaps your dad will have a much slower progression, not that my dad's progression has been fast or anything but the slower the better!

Your parents may be bombarded with information and it may be difficult to process but the best thing my dad has done so far is getting a feeding tube called a PEG. He had it done in March and has gained 12 pounds since then. Let me tell you, the weight gain has helped him more than any medication and if there was one piece of advice I would say you absolutely should have it is that weight loss has a very negative impact on a person with ALS. My father's decline has literally hit a plateau since the PEG and it is better to get it earlier rather than after too much weight has been lost. Of course your father's neurologist and speech therapist will be better able to assess when the best time is for your father. It is a non-invasive procedure and trust me it improves the quality of life significantly. My dad initially didn't want to have anything to do with it but after he had lost 20 pounds and when I properly explained to him what it entails he came around.

The next thing is try very hard to keep your spirits up and for your dad to remain as positive as he can. My dad has displayed incredible courage and he is such a trooper I am in awe of him. It is so important to have a positive mental attitude and you can help your dad with that. You can read about many people on this forum who defy the odds and whose bravery will amaze you.

I'm sorry that you had to come looking for this forum. I really really know what you are experiencing. I too was away from home when we got the diagnosed. I was in New York City doing a dream job and for our family the news came right out of left field. I had been researching on the internet what could cause my dad's slurred speech and when I came across ALS I skipped right over it. I read the description and thought, "Well there's no way my Dad has that!" and determined he had something minor that was treatable. It just never crossed my mind that my dad could get a disease this rare and this horrible but honestly the people here on this forum have guided me through the worst news I have ever received in my life so you totally came to the right place. You will find tremendous support here and great advice and valuable information.

Hang in there and know that you are not alone!

 

[Marjorie R. Wilcox]

We welcome you although we are sorry for why you are here. Likely the doctors saw more than just take the slurred speech as a symptom, such as tongue twitching. But anyway, we pray you will settle in and be able to take things as they come... if and when. It's "hope for the best, but prepare for the worst". We hope he can take one day at a time and keep his quality of life much the same. At 77 anything can and will happen. We wish you could be closer as the family will have to pull together..... God bless you and your family.

 

[patricia1]

Thats how i started 10 years ago.
Took 7 years too move to limbs
pat

 

[Clever Girl]

Thank you so much for all your kind words and helpful support. I've been dealing with acceptance in the last several weeks and this has helped me tremendously.

 

[Clever Girl]

thelma313,

Thank you for taking the time to write your story in such detail as it parallels my situation so closely. I'm so sorry to hear about your Dad as well. There has not been a day that I have not thought about your post and how I have to focus on remaining as positive as I can. I have to learn how to be hopeful in a way that I've never experienced before (probably will be a better person for it).

I've also started the logistics of moving home to be with my family (part-time phasing into full-time) and simultaneously preparing to have my life changed so that I can be there for my Dad which is an honor.

Your advice regarding PEG was gently communicated by me to my mom last night on the phone, after she brought up that he's starting to have some trouble. I can't tell you how much it helped me to be able to offer her a something, a plan for when I get home next month, I'll go with her to the doctor and discuss the details of PEG.

Thanks so much and best to you and your Dad!

 

[thelma313]

Clever Girl,

You are very welcome. I am touched that my post may have helped in any way. I'm so glad that you had the conversation about the PEG with your Mom. If your Dad is resistant to it, let him know that my father wanted nothing to do with it at all at first. I really had to campaign to get him to go along with it and he is so glad that he has it. He surely would have died by now if he hadn't. He can't eat anything my mouth except for puddings, yogurts, applesauce and cheesecake. Not exactly the 4 food groups. The nourishment and weight gain gave him energy and strength and actually improved his condition.

I know what you mean about having to learn to be hopeful. It can be very challenging and yes we probably will be better people for it one day. I know that ALS is devastating but in many ways it has brought out a side of my Dad that I have never seen before and made him gain a perspective and acquire a bravery that I know I will treasure for the rest of my life.

I have often thought of you and how you are doing and coping. I too had to deal with acceptance and let me say that the first few weeks after the diagnosis are now a blur to me. I guess I went through shock and grief and although I still get waves of sadness regarding my Dad, I am stronger and feel more confident about handling this situation. This forum helps a lot. There are so many amazing people here with such great advice. Whenever I have had a question, it has been answered.

Take good care of yourself and give my best to your parents.