Pace of progression?

[KinzaDAF]

Hello everyone,

My father ( age 78 ) was diagnosed last November with bulbar palsy. ( He'd been having symptoms since July, so it has now been one year since symptoms began. ) Symptoms began with slurred speech. By March his speech was very difficult to understand but we could pretty much figure it out if he spoke slowly. In July speech became unintelligible, though he continues to carry on talking anyway. He is coughing a lot and my mom says that when Dad eats/drinks, it comes back up "like a shower". It seems to *me that things are progressing very quickly, but I have nothing to use as a frame of reference. I am hoping someone here will be able to help me figure out what this pace of progression may mean. I don't know how much more time Dad has. IS this a quick change/decline?

Also:

Dad has an appointment at the Cleveland Clinic next Friday, August 7th. If anyone has been there, what can we expect to happen at the first visit. ( I have heard that a team approach is used. )

Thank you all for any help.

Debbie
KinzaDAF

 

[KinzaDAF]

Oops! A correction: I MEANT to say that in JUNE Dad's speech became unintelligible! ( We could finally figure out his speech in March but were no longer able to in June, a mere 3 moths later. )

Debbie

 

[joelc]

Welcome to the forum! Sorry about your dad and what is happening. Unfortunately there is no way to predict the rate of progression. Everyone is very different and he could experience what we call a plateau and not progress any further for a long time. Take care!

 

[BethU]

Debbie ... Joel's right, it's really impossible to predict the progression of ALS. What I go by in my own situation is my FVC ... a measurement of lung capacity. The neuros at Cleveland Clinic will no doubt have a respiratory therapist measure that.

Usually a team approach means your dad will meet with a neurologist who will examine him and go over his symptoms. He will also be evaluated by a variety of therapists ... respiratory, speech, physical, etc. The good thing here is that he will be seen by one of the top clinics in the country, so he will be in excellent hands.

For many, many months, I experienced the same kind of "explosive" regurgitation that your mother describes, when food and liquid are expelled before you can even swallow. Now I have a feeding tube that allows me to get enough nutrition. It is a very small tube that goes from the abdomen right into the stomach, and you can use liquid supplements like Ensure, or liquify regular food. It's important that your dad keeps his weight up. That is the single most important thing in slowing progression, I've been told.

I'm so sorry your family is going through this. People at the clinic will have many recommendations for keeping him as strong as possible and fighting the disease.

Take care of yourself and your mom, too. This is very stressful on caregivers.

 

[KinzaDAF]

Thank you both so much for your replies. If patients have differing rates of disease progression and can even plateau at *any point, I have some hope that Dad may be with us for some time yet. It's just so scary! I have been afraid that with the way food is coming back up and that his attempts to swallow pills with water have led to major coughing and choking spells, he will aspirate. I hope that the doctors at the Cleveland Clinic will be able to provide some help. ( I did recently learn about a product that thickens water, and my mother has ordered some, so at least Dad will be better able to drink without choking. ) Mom did mention the possibility of a feeding tube some time soon, as Dad had been losing weight. ( She's doing her darndest to address that, by feeding him high calorie foods. )

Debbie

 

[BarryG]

Debbie, welcome to the forum and I'm sorry about your Dad. As anyone who has one will tell you, the peg (feeding) tube is the only way to go. It is very easy to use, there is no choking, coughing, spraying or aspirating and it is great for taking pills that can be crushed. To help with swallowing there are a bunch of thickening products that are usually available in drugstores and something that else that I eat a lot of is Boost pudding. It had a lot of calories and is the right thickness to go down easy. Also yogurt works good and I have a high calorie breakfast smoothie every day. I am sure that the clinic will be able to give your dad a lot of help in managing his eating and drinking problems and will be able to answer many questions. All the best to you and your parents.

Barry

 

[BethU]

Debbie ... just to add one more point. Barry mentioned yogurt, and that is how I take my pills now. It goes down pretty well, and is one of the two things (applesauce is the other) that allows me to swallow pills by mouth. I take a teaspoon of yogurt or applesauce, place the pill on top, and it usually goes right down.

 

[GlenBrittle]

Those or any other substance that you are not used to chewing.

Like thick pea soup. I even took pills with ice cream.

Glen

 

[trying to stay positive]

Hi Debbie,
I'm sorry to hear of your father's diagnosis. My husband has limb onset & so far has no speech or swallowing problems, but I have read many times on this forum that having the person tuck their chin down to their throat helps to make swallowing easier. Maybe he will want to give this a try while he waits for his clinic appointment. Hang in there, I know this can be a scary disease.

 

[GlenBrittle]

Good Tip Linda,

I forgot about that one.

Glen

 

[KinzaDAF]

Thank you all so much. I will pass this information along to my mother. Next Friday ( and Dad's appointment at the Cleveland Clinic ) can't come fast enough for me!

Debbie

 

[Gelthling]

Hi Debbie,

Our experience is mum speech started slurring March last year, at Christmas she had to start writing a sentence that we just couldn't understand on the day, and now can no longer speak what so ever. (My mum is 54 and would talk a head off a chook!) All I keep being told is everyone's journey is different - and that can be very frustrating at times! I was going to suggest the yoghurt as well-mum seems to be able to swallow liquids better with a straw - though this doesn't help everyone so our speech pathologist says. Yes, bend the chin to the chest to swallow, and ensure when he is eating that there are no other distractions and he just concentrates on getting things down.
Best of luck!

 

[Marose]

Hi Debbie,

My mother, 77, also has bulbar with slurred speech. She received her food tube 2 months ago and has had no problems with it. She had a terrible time with the coughing even after she stopped having food and liquids by mouth. Her doctor that specialized in ALS prescribed 2 medicines: one is a tablet that is crushed and put through her food tube and the other is a patch she wears behind her ear that is changed every three days. She has had NO problems with the coughing since. Of course if your father is still receiving food and liquids by mouth, that could be the issue. The medicines and jevity (for food tube) would have been extremely costly. My ALS rep had me contact Hospice of Cincinnati. We have has no expenses since (other than a couple meds they don't cover).

as you've heard, progression varies widely but i'll let you know how hers has been. Her speech was slurred October of last year. She wasn't diagnosed with ALS until March as at first we thought she just needed new dentures. We had started grinding her food in March. She had a quick decline in her swallowing. in two weeks, she went from eating ground food and thickened liquids to not having anything by mouth and having the food tube surgery. then things seemed to plateau. She is still walking and has use of her limbs although they are getting weaker. she said sometimes she has trouble ripping of the toilet paper. hope this helps.