husband diagnosed 8/7

[l2c]

Hi Linda, my husband was diagnosed in 2005 at the University of Chicago by Dr. Roos who happened to be a personal friend....never thought we would have to see him in a professional capacity!

Don's ALS started with cramps, then in his left hand then right etc. His hands right now are very clawed - I don't see too many who have that. His muscles were so strong that the weaker ones gave up and it pulled his fingers in toward the palms. He has figured out how to do a lot of things - I don't know how!

Don was diagnosed early because his sister was diagnosed in 2003 with almost identical symptoms. (No previous ALS in the family to our knowledge)

We live with my youngest daughter in Illinois and with the our brother in law in Florida (Don's sister died in 2006). We sort of own 2 half houses!

Right now Don can't stand or walk without much support from a walker. Outside the house he uses a wheelchair. He is on a BiPap at night and will soon be getting a feeding tube.

 

[brooksea]

Linda,

Very interesting about the infrared heat lamp! I've gone to a Reflexologist before - fell asleep in the chair, but woke up invigorated! Let us know if this seems to be helping your husband. I'm sure he doesn't mind being the guinea pig.

Y'all keep us posted!

 

[trying to stay positive]

Infrared heat lamp and a caregiver question

Hi CJ and all,
I don't know if we can tell if the lamp is helping or if it is the vitamins and supplements or a combo of the two. The Dr. also has him drinking a protein drink everyday. The Dr. recommends whey protein. I also have him eat a whey protein bar everyday. So it is hard to say what is helping or if it is a little bit of all the things. All I know is that he says he thinks his muscles feel a little better since starting all of this. Even if it is all physcological, who cares as long as he feels even a tiny bit better. He can be a real bear sometimes.......grumpy, snappy, uncommunicative, etc.. I understand his frustration and even his anger, but it can be difficult to deal with. I find myself wishing that he would move on to acceptance already!

On a completely different subject here...........I have been reading various threads and have read several mentions of wives being paid to be caregivers for their husbands. Does anyone know what that is about? Is it through the government? If so, Federal, State, local? I am definitely interested in learning more about this, as I will be the primary caretaker for my husband anyway. Thanks for any help and info.

Linda

 

[CindyM]

Hi Linda- I think the program that pays in-home caregivers differs by country and by state. Here in Massachusetts, if someone has a disibility and needs in-home care, he or she can hire their own caregivers, (paid for by the commonwealth) and many choose family members. If I ever get to that stage and have to hire my husband I'm going to make sure he has a detailed job description and some really explicit time sheets to fill out! LOL, I can see me now, waiting for the Red Sox to finish (they play daily) before i get my nose wiped. :-D

Cindy

 

[trying to stay positive]

need some more advice

Hello again. You guys & gals are the best! Support, advice, helpful hints, etc.! Thank you, thank you! I have another question to put out there. My husband has limb onset and is having a hard time shaving. He is down to once a week, but even that is getting difficult. He is not ready to hand that chore over to me as of yet either. He wants to get an electric razor. Any advice or experience on a type or brand that may be the easiest for him to use? He has a hard time with gripping things, but lifting his arms is what is especially difficult. Thanks for any help.


On another note, we put our house on the market Tuesday night. Please say prayers for us that what needs to happen will happen, and it will all be in Divine Order. I have lots more to say, but have to go for now. Thanks again to all of you trully wonderful people.

Linda

 

[kelly]

Hi Linda,
My husband has been using an electric razor...after years of manual shaving. A huge tip is to not let the beard grow to long...or it does not cut. I always get nervous when I have to shave my husband with a real razor. He thought about growing a beard...but I knew it would be really difficult to trim at a later time. I will keep you in my thoughts and prayers that your home sale goes well.

 

[CindyM]

Another grooming tip: Electric toothbrushes and electric flossers work well for me. My main trouble is shampooing my hair. My fingers cramp and hands get weak after but this is also a task I am not ready to give up just yet. Cindy

 

[Gina]

Hi my name is Gina and this is the first time i have posted.My husband Glen was diagnosed by the first neorolgist he went to in 2004.We were referred to London for a second diagnoses from Dr.strong....whom would not commit to a firm diagnosis of als....we were given a probable diagnoses of als and the last time we visited him was last nov...at which time we were told because of his respiratory weakness that it may be a month or so before he passes...it is now one year since.We also had to sell our house because of the stairs and i was anxious to find a place that was wheelchair accessable to be prepared for the future.Glen is getting weaker everyday.He can still walk but only about 10ft and then he is grasping for air.He wears a bi-pap at night and uses his oxygen now all day.I go to sleep every night beside him and wonder if he will wake in the morning .This disease is the most cruel disease ever.I also feel very much alone although i have familly and friends it is hard to explain how excrutiating the pain can be to watch my husband decline and i feel so helpless.He was always the strongest and most fit guy for his age people envied his physic and now he looks so frail and weak and cannot even open a water bottle.Sorry to go on like this but my heart just feels so heavy lately and i know the end is coming soon and i am afraid!

 

[cheryilyn]

hi gina,
welcome to the forums. So sorry you and your husband are going thru this. There are a lot of great people here to help you thru this with support and advice.

 

[brooksea]

Gina,

I am so very sorry your husband has declined so. You will find suppport here from others in similar situations.

I hope you find strength to endure as we all have to. Let us hope for a cure or treatment very soon on the horizon...

 

[LUVELYROSE]

LINDA-
IM15 Y/O AND MY DAD WAS Dx WHEN I WAS 11 FOR YOUR DAUGHTER I THINK IT HELPED ME A LOT WITH MY DADS DEATH THAT I MADE MANY MOVIES OF US TOGETHER DOING THINGS WE LOVED TO DO. AND BE THERE FOR HER ITS A LONG AND ROUGH ROAD FOR US KIDS. MAY GOD BE WITH YOU IN THIS TIME.

-ROSE

 

[LUVELYROSE]

Gina-
I Know Exactly How You Feel. Its Like Theres A Brick In Your Heart And It Never Goes Away. Im Soo Sorry For You And Your Husband. May God Bless You.
-rose

 

[CindyM]

Hello Gina and welcome to the forum. As you say it is a lonely feeling to try to cope with this monster. In reality, there are a lot of folks who share and empathize but it ptobably does not always seem like that. I am so sorry for what is happening to your family. feel free to write anytime about whatever is on your mind. Regards, Cindy

 

[CindyM]

Rose, you never cease to amaze me with your maturity and compassion. Your Dad would be SO proud of you! BTW< how is schoo going this semester? Cindy

 

[Gina]

Hello again thank you all so much for responding to my post.You all sound like such a wonderfull group of people i am so fortunate and thankfull to have found this group.Today it is raining and i feel like the weather .My husband got up to drink his tea and is now back in bed again.He owns a cutlass convertable and an antique tractor.Yesterday he told me that he wants to sell them both to give the money to our children to help them purchase a house.His father had left the tractor to him when he died.He phoned his mother yesterday to tell her and after he hung up the phone he started to cry...he said i love that tractor....i think it is justt the sentimental attachement but he said i cannot take it with me.It just seems like everyday now he says something like that and i fall apart all over again...i am probably babblin i apologize i guess i am just so overwhelmed by everything happening so quickly.I must go for now as i have a few errands to run while he is sleeping.Thanks again for your support!