new to this site...need to understand this disease

[donnablakely]

Hi everyone......My brother and I are the caretakers of my father (80 years old) who has been diagnosed with PLS. He is unable to walk without a walker, and even with that, he can't do much. PLS is affecting his speech and swallowing as well. I "get" the cause...upper motor neurons and the affect on the muscles.......but really am wondering what to expect............
....will he be bed ridden eventually?
....will it affect his ability to breath?
....will he be a candidate for hopice?
....does it affect a person's personality and demeanor? From what I have read, the disease doesn't destroy the mind....
....is it normal to lose a lot of weight?
....when will he need full time care?Right now he is living alone with the support of my brother and myself, but it is becoming more and more challenging because he is getting easily upset and angered...especially when we can't understand him. My brother is the primary caretaker and it is about to wear him out emotionally. We both want him to stay independent as long as possible, but we worry about his safety.

any help appreciated...
donna

 

[Zaphoon]

I feel for you all! At the age of 80, its my guess that PLS could seem to work more quickly than usual. At that age, muscles are already weakened by the natural aging process and who knows what motor neurons look like at that age.

I would say that the days of independent living for your dad are probably numbered and that the PLS is helping speed things along to further shorten that era.

Emotional lability is brought on by upper motor neuron trouble so, folks with PLS may experience this as well as folks with ALS. My temper flares at times and I am used to having more control than I now have (at times). Aside from EL, it can be very annoying and frustrating when you can't get people to understand what it is your saying.

You guys need some assistance and an odd break here and there.

Yes, PLS can make breathing troublesome.

Zaphoon

 

[olly]

hi donna.
sorry to hear about your dad,80yrs is quite an age to develop pls.
here are some of the best sites that explain pls,hope they help.
also if you look through backdated threads there will be many usefull posts.
any questions feel free to ask:-D

Primary Lateral Sclerosis Information Page: National Institute of Neurological Disorders and Stroke (NINDS)

Primary lateral sclerosis - Wikipedia, the free encyclopedia

Primary lateral sclerosis (PLS) - MayoClinic.com

 

[MtPockets]

You might want to consider asking his doctor about home health care, or any type of home assistance taking care of him.

 

[Tich1]

Hi Donna , it's not going to be easy for any of you take all the help available , you need rest and time out so you can be strong enough to care for your father . Sorry you had to come here , but you're welcome , and you'll find support and knowledge here xx

 

[donnablakely]

Thank you all for your responses. My dad currently has home health care, but we are just trying to foresee the pivotal point at which he will need some kind of caretaking while he is alone. My brother and I work fulltime...so you all know how difficult that is. My mom died a year ago this month from lung cancer........and while we tried to be there as much as possible, at least she had our dad with her all the time. I just worry about him being alone....and especially with his speech deteriorating....I am afraid he will feel so confined in his body...unable to communicate...either socially or when in time of need. I was talking to my brother about my concern that he will eventually not be understood on the phone...even with his best effort.........it is hard to understand him now. If something happened and he called 911 on his cell (no longer has a land line)....they will have no idea where to send the ambulance...sigh.............my mind is constantly thinking two steps ahead trying to prepare for things we have never considered before......and to prepare for those things before we actually experience the need............just know I missing a lot of things, though since I have never been down this road before. Felt the same about my mom as she battled cancer.............
Donna

 

[BethU]

Donna ... my speech is gone, and I wear one of those emergency call buttons to a service. They have some kind of amplifier that allows them to broadcast to any room in the house. If they get a button call and no one responds to their first amplified call, they telephone the house. If they cannot understand the person who answers, they call 911 with the location. I have a lock box on the front door with a house key in it, and the service gives the combination to the responders.

They are supposed to only ask me yes or no questions, but by now, no one can tell which one I'm saying, so they just call 911. I've used it twice and it's great.

I also have a TTY telephone (that the deaf use) with a keyboard that sends text messages. All emergency services have TTY capable phones at their end. It is a loaner from ALSA (ALS Association), and I am giving it back, as the button works so well, but if you can get one, it's a good solution. It also works as a regular phone for others.

I also have a DynaVox text-to-spoken-word device hooked up to my phone line, but they are expensive. I still prefer the button, as it's faster and cheaper, and requires no explanations about why you're calling. Just "send help!"

There are a lot of devices available for PALS, and wonderful support organizations, like ALSA and the MDA (muscular dystrophy assoc.) Register with them and grab all the help you can get. It is complicated dealing with ALS, and we all come to it knowing nothing about what to expect ...

Good luck to you and your brother and your dad.

 

[olly]

hi donna.
as beth said get in touch with your local alsa or mda.
i have dealt with renee lowery at the north texas branch for my friend del who passed away earlier this year,he could no longer talk.
i will give you her contact details but honestly the alsa let del down badly.

Renee Lowery, M.S.
Patient Services Director
The ALS Association, North Texas Chapter
1231 Greenway Drive, Ste 270
Irving, TX 75038

Office: 972.714.0088
Fax: 972.714.0066
Toll Free: 972.714.0088

i think the mda are better at providing any equipment to make things easier.
as for home care,del was told there has to be a fulltime carer at home before any other care can be given,unless you pay privately.

all the things beth mentioned will make things easier and give you some peace of mind when you can not be there.
i have the emergencey alarm system like beth,works the same way and even have a key in a combination lock outside my front door.
thankfully i have not had to use it yet,though knocked the alarm button in the hall a few times by accident.

hope you get things sorted out soon

 

[lbennett]

My mom is 83 years old. She is completely unable to care for herself now and my Dad of 84 is taking total care of her with out any help.

I live several hours away and it just crushes me to see my mom going down hill so fast.
I travel in EVERY Friday to attend to her and give my Dad a break.

Her ability to form words has all but left her. She has to eat only soft foods now and still gets choked easly. My main worry now is that she was hospitalized for 4 days this past week not being able to breathe. She says she doesn't hurt but she just can not get her breath. She is on steriods at this time. I worry that this disease has now attacked her lungs and is taking the ability to breathe away from her.

They will be married 65 years October 16..

My heart breaks for anyone that has a family member that is going thru this... It is very hard.