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K Lynne T

New member
Joined
Mar 20, 2013
Messages
7
Reason
CALS
Diagnosis
12/2011
Country
US
State
Texas
City
Carrollton
My husband has ALS. He started developing symptoms Thanksgiving Day 2009. Currently, his speech is affected and he has cognitive thinking problems. It has not progressed to his lower body yet (which I am grateful). The man I married was a "man's man", loved to get involved, outgoing and loved giving his opinion on everything, loyal and I knew I could always depend on him. Now, I've been placed in that role. Most days I can handle it, but not today. When I get home from work, I put on my "happy face" and try to cope.

I've only posted once on this website, mostly I read the stories. Now, I'm terrified after reading them and all the pain and suffering this disease causes. How am I supposed to work (need money and insurance besides Medicare) while taking care of him, the house, the cars, etc. It's overwhelming! What do I do when he can no longer walk or take care of himself?

I am terrified! Any words of wisdom?
 
I am so sorry that you have to go through this. You may need to look into getting some outside help when the time comes. You will be of no use to your husband or yourself if you don't have a break once in a while. You will not be able to do it all by yourself and stay healthy for him and yourself.

Maybe contact your local als clinic and see what is available. Sometimes you have to put yourself first. You are a loving and caring wife. You can't be happy 24/7. All your feeling and fears are completely normal. This is a terrible disease not only on the PALS but the care givers too. Maybe even more so. I am sending strength and love your way. HUGS!

We are here to listen anytime you need.
 
Everyone has days when they just can not handle it--I'm sorry today is one for you. You and your husband have been facing this a long time and have the added burden of cognitive problems so don't feel bad for having an off day.

It does suck--not just for him but for you too! I know how hard it is to put on ;that happy face and keep on going. the only thing I can suggest is you try to schedule a couple of days off--a respite is really great for helping you to get your head back in the game. I know how hard it is t o schedule and arrange==believe me! I have only had one in 6 years! it was the so great--got away for 4 days and nites with girlfriends. I had to start planning 2 months before hand to make sure there was proper care for my husband. Our ALSA helped financially with $500 respite fund and family all pitched in.

In the mean time, maybe you could just get out for the evening--get someone to spend time with him and go straight from work to dinner and shopping or a movie with a friend. Please, do something for yourself--you deserve it!

B
 
I really can't add anything to what Barbie said... please go reread her response. You need you time as much as you need air to breathe and food to drink.
 
Thanks so much for the words of wisdom. Some days are just harder than others. My daughter is just finishing up her first year of nursing school, so she'll be able to help more. My son will be returning from Afganistan in June, so that will help also. Family is what is important.
 
DO I HAVE ALS ?
The two most common questions ask by new suspecting ALS patients are, do I have ALS and the other is what should I do? Do I have ALS is a difficult question to answer. One visit to your neurologist will not be conclusive. He will tap on your knee, push down on your elbows, perhaps administer or schedule a couple of tests and will still not give you definitive answers. Come back in three to six months or go to a different recommended neurologist that will do about the same thing, with no better results. After a year of two of disease progression the neurologist will conclude that you probably have ALS. There is one drug, Rilutek, it is very expensive and may extend your life by six months. He can prescribe it for you if you want.
What should I do is a much easier question to answer. One thing is that bucket list, if you can afford it; take that trip or adventure you have always wanted to do. Make contact with relatives and old friends that you haven’t heard from in too long of a time. Make your home as accessible as possible, ramps, rails etc. Straighten out your legal choices and investments. Make final arrangements, your pastor, family members and funeral director can all be involved.
Next, FIGHT THE GOOD FIGHT. You are the best advocate you have. ALS will wear down and decrease your physically capabilities and if you let it ALS will emotionally weaken you. The feeling of hopeless and depression can creep in. Do not depend on your doctors to give you all or the best information. While you have the most energy and hope, get informed and involved in the on going ALS efforts. There are multiple organizations and groups that are searching for the best next choices and how to achieve those goals. A web site search will lead you to, CLINICAL TRIALS. Gov, ALS Association, ALS UNTANGLED, local support groups and smaller advocate groups like ALSTUN. Large and small, staffed professionally or with volunteers they are not competing groups, however they are not well organized enough to present a unified effort. And they all need funding and volunteer support to carry on most effectively.
Given that doctors have very limited treatment options the FDA and the pharmaceutical company’s are the biggest players in the game. Different type of research done is being done by different companies and institutions. Kansas State University, Neuralutis Pharmaceutical and Cyterkentics Pharmaceutical are currently involved in drug trials and or research. Stem Cell research is on going at Mayo and Emory. I am sure there are others that I have not mentioned or aware of.
A common goal for all of these advocacy groups and companies is to convince the FDA to more rapidly approve these multiple treatment options. All of these efforts need your support. Finding and supporting these efforts is the answer to the question, What should I do? Finance, political pressure and awareness through social media outlets are all opportunities. Your activism and efforts represent the greatness opportunities.
Randy Bergs
 
The only thing I can add is that when my husband first got diagnosed in Jan of 2010 I thought the world was going to end. I felt SO much fear of the unknown and uncertainty in my own ability to handle everything that was sure to come. Now, that my husband is nearing the end of his struggle with this disease I feel a lot more at peace with it. I feel very sad about the hole that is going to be left by his death, but no fear. My faith in God has evolved tremendously since diagnosis. I am not the same person now that I was at diagnosis. Don't waste any time or energy worrying about anything that is out of your control (which is practically everything). Try your best to keep your attention on the present moment. Have faith that what you need will come. Lean on people that love you. God will show up. Love, light and strength to you!
 
@K Lynne T:


You must remember that no matter what happens to your husband's body, he is still the same person he always was. This disease is there, but it can't change who he is.

And, I don't mean in not ignoring the symptoms, of course not, but to look elsewhere for gratification. Always appreciate all the OTHER things you both still have and can enjoy. You should think that if it weren't this, it would likely be something else. Life is indeed too short. Make the most of it if you both can. I know this disease is tough and you are likely in the grieving stage.... but it will be dealt with as soon you guys accept it and use that strong motivation in better modes. It will be okay... and if it isn't... determine to be okay.... go on from here. I don't know if I said anything well, so just know we all here care and want to help.


My best regards,



NH
 
Listen sweet pea, you can get help! He can get disability from Social Security and Hospice will help you...Reach out..((HUGS))) to you we have all been there!
 
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