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st123

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304
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Lost a loved one
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US
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Michigan
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Mid
Since my Dad's diagnosis earlier this week, I have spent hours on the internet. There is so much information and so many new medical terms to learn.

My Dad is 78, which seems much older than most of the cases I've been reading about. I'm interested in learning about others' experience with ALS in senior citizens. As if the disease isn't bad enough, I'm concerned about how we're going to deal with all of this as well as with his existing heart, diabetes, blood pressure, gout, and arthritis issues.

We will meet with a specialist next week and I'd like to have a good list of questions to ask.

He's still driving which scares me to death as he seems to be getting so much worse so quickly. Will the doctor advise him to stop?

He is having issues with excess saliva and problems with speech and swallowing. Any thoughts as to what to expect next and when with these problems? Does the Riluzole help?

He's also having a terrible time breathing. The doctor said his diaphragm is affected and not working well. He said that the specialist will determine if he's a if he's a candidate for a diaphragm 'pacemaker'. Does anyone have any experience with this?

I'm going to ask the specialist about mental issues. I'm sure he's depressed, though I understand that the crying is also a symptom of the disease. I'm worried about other issues though - short term memory loss, obsessive behavior, and lack of judgment. I thought that these were due to the stress associated with his house burning down a few months ago, but now I'm wondering if they're related to his disease. How do I know?

I know I sound like a candidate for the worst daughter of the year award since he has so many symptoms and has just been diagnosed, but we've been trying to figure it out for seven months and have had him hospitalized 3 times in that time period, but no one figured out it was ASL until we saw a new cardiac doctor last week. He seemed to suspect it immediately and made the neuro referral and now here we are. I would really appreciate any thoughts anyone has to offer. Thank you.
 
Re: New to this

Hello, I'm new to this too. My husband is 76 and was diagnosed in 9-2011. He has similar problems to your Dad. He has gotten a suction machine for the saliva and that has helped. Last week he was trying to cough up stuff and couldn't get it out , I called his Dr. and they have a cough assist machine coming tomorrow, I guess that pulls the stuff up from your lungs. They also sent a script for a med to dry his saliva up and that has worked quite well. His right side is getting very week, he walks with a cane now and has to have a brace for his right foot so it doesn't drop down. he's fell quite a lot, also his speech is real bad no one can understand him,and he gets very frustrated. He is still driving but told me yesterday he can't turn the key on in the pick up! He is still plowing snow and salting parking lots with the help of my son in law who has to poor the salt in the hopper.

Just take it one day at a time and ask alot of questions if you don't know.
 
Re: New to this

I'm so sorry you had to look us up. You'll find a caring and compassionate group here on the forums.

It's not uncommon to have a long period between symptom onset and diagnosis. Some folks go a year or more before receiving a MND diagnosis.

Right now Rilutek is the only FDA approved drug for ALS. It's worth a shot. His insurance will probably cover the drug. Many of our members have been on it for years. Some couldn't take it because of side effects, but your Dad's Doc will monitor him for any indication that there is a problem. There are also Clinical Drug Trials that he may be able to participate in as well as other research studies.

FTD (fronto temporal dementia) has been found to be much more common than previously thought. You'll find some good conversations with links to research in our archives by using the search engines on these forums. You may also search topics by using the tags at the bottom of the threads.

If his driving is scaring you he probably needs to stop. Make sure his physician is made aware. If necessary, he can even contact the DMV to have his license revoked. Call the DMV to find out what is required to receive a handicapped tag for the car if he doesn't have one already. There may be a form for the Dr. to sign.

There are medications and treatments that may help with the saliva. There's also a new med for emotional lability called Neudexta.
There are also a couple of threads about the diaphragm pacing system. There's lots of info about Bipap, a non-invasive ventilator that is used for ALS patients. You'll also want to check with the Doc to get a suction machine and cough assist. If he's falling, he may need an AFO and or a walker or power wheelchair. Difficulty eating may require the placement of a Peg tube to provide fluids and nutrition and to avoid aspiration pneumonia from choking.

Make sure your dad gets registered with the MDA/ALS Division and with the ALS Association in your area. They will provide handbooks to guide the caregiver. Many offer support groups and maintain a lending closet for equipment. He also needs to be registered on the CDC site where they are tracking cases in the US for research purposes.

See if your Dad can be followed by a specialist in an MDA or ALSA Certified Clinic. All the different specialties (PT, OT, Speech, Dietitian, Respiratory Tech, etc) are brought together on the same day to examine and follow the patient.

Do take a detailed list of questions with you to the appointment.

Good luck.
 
Re: New to this

St123, you're father may not mention his driving capabilities or really I should say his incapabilities to the doctor. And many times it is overlooked by the doctor. If you are going with him, you really need to mention it. You wouldn't want your father to be out on the road and get disoriented or something worse. Be prepared for a depressive state, losing your driving privileges will mean he's losing his independence.

I'm sorry for your father's diagnosis. I will keep your family in my prayers.
 
Re: New to this

Hello st123 & Bella77~

Sorry you both have to be here >>>>HUGS<<<< to you both!
My Dad was diagnosed one year ago this month :sad: he will be 77 this year. My Dad gave up driving probably 7 months ago. His symptoms started in his left hand, moved through his arm, left leg to right arm and he's at the point where he probably won't be able to stand really really soon. His speech is now slurred almost to the point that I have a very hard time understanding him. He uses the suction daily & oxygen (although not all day).
About a month ago he did go to get tested for the Diaphragm pacing system but his FVC was at 35% & my understanding is it needs to be 50% or right around there to be a candidate.
My Dad has fallen 3-4 times flat on his back, once on his face. There is NOTHING easy about this evil disease for sure~for anybody involved! It really sucks!
The only upside is this ALS Forum of Friends! They are all supportive, caring, will make you laugh & cry with you! I have learned a lot from them! And am very grateful ;)

Oh & if your Dad/Husband is a veteran contact your local VA asap. They will help you! They have been outstanding for my Dad & Mom.

You do have to take one day at a time & remember every moment you spend with him is a gift <3
 
Re: New to this

Your concerns about his cognitive issues are valid. Check out the ALS/FTD forum here.. it will provide you with further resources to see if that's a piece of the puzzle you're dealing with.
 
Re: New to this

I forgot to mention even with all of this going on with Dad he still has his "smarts" about him. His brain hasn't gone anywhere :)



:!: ps. GO PATS!:!:
 
Re: New to this

Thanks to all for the kind words and advice.

Bella, I'm so sorry to hear about your husband.I will definitely ask about the suction machine and rx for the saliva. I want to ask about the cough assist machine as well since he has been complaining that he can't cough the phlegm up and feels he's choking.. Their symptoms sound so much alike. His ability to speak has deteriorated so much recently and it's also his right side that is the worst. Is there a support group in your area?
 
Re: New to this

Hi Deb, thank you for all of the information. I'm sorry to hear you are dealing with this dreaded disease.

I am taking notes, including reminders to ask about clinical trials and a drug for the emotional lability. Yet another new word for me today. I'm going to share with my dad. He hates the crying and tries to explain to everyone that it's a symptom. I think that label may make it easier to think of in clinical terms, rather than emotional. Maybe anyway.

The specialist we're seeing next week is listed on the ALSA certified center website, which I didn't know existed til now, thank you. I'm happy to learn that. I'll be sharing that with Dad, too. Maybe I'll even get him on here one day. Thank you again!
 
Re: New to this

Hi Dorothy, thanks for the thoughts and prayers. I will definitely mention it to the Dr. I know it will be tough on him, though I think he knows it,s coming.
 
Re: New to this

So sorry for your loss, Katie. Thanks for the as ice. I will keep exploring the forums. So glad I found you guys today.
 
Re: New to this

Hi SisteRhood. We are contacting the VA. It sounds like they will be very helpful. Thank you for taking the time to share.
 
Re: New to this

va is difficult to work with depending in what area you are assigned. attempt to contact a rep from the pva that may be sitting in your local va office. their help is invaluable
 
Re: New to this

You have found a valuable resource in this site. All the people here are battling or are helping someone battle this monster. At your Dad's age ALS will be very hard on him. My wife is 68 and in almost 3 yrs. it has robbed her of most everything she loved in life. It has done a number on me also as her caregiver. ALS seems to age a person. She looks and acts much older that 68. Their are no rules with this beast of a disease.It acts differently on each person. You can never put a finger on what will happen next or head it off. That is one of the main frustrations in dealing with it.
 
Re: New to this

Thanks, Hagingon. Yes, my dad seems to have aged significantly over the past 6 or more months. I'm going to have to reset my thinking. I'm a project manager and use planning and schedules to deal with tough or stressful situations - even in my private life. It helps me to feel somewhat in control of a situation. Guess I'll try to use everyone's advice to be as prepared as possible and then just take it one day at a time. Um... can you guess that 'one day at a time' might be just a little challenging for me? ;) I have found a support group that meets once per month in a city about 40 minutes away. I'm going to check it out.
 
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