Change in Rate of Progression

[clewbcg]

Hi Everybody
I haven't posted in some time, but have really appreciated the helpful posts and support posted by others. I have a question regarding rate of progression. I know that everybody is different, but was looking for some direction from those whose progression started slow and then shifted into high gear at some point. I asked our doctor about the concept of plateaus and he said that ALS tends to be "slow" at the beginning and end and has a steeper curve in the middle. I got the idea that he doesn't believe in the concept of plateaus. My PAL was diagnosed 9/06 with a probable onset in 5/05. He was able to use his hands pretty normally until 1/08 when he suddenly seemed to shift into high gear. Now he can't really dress himself and it is very difficult for him to lift even a plastic fork or spoon. He is also falling more and makes alot of choking and gurgling noises at night. He also has trouble getting under the covers. He was taking lithium until this summer when he stopped because things were getting worse and He thought it was making him slur his words. The doctor says it is the ALS. His speech is still understandable but is getting worse all the time. I noticed that when we are out, people have a really hard time understanding him. Anyway, my question is: Will things continue at this rate? I read all the posts about making your house handicapped accessible, but we do not have the funds to make major changes. Our house is for sale, but no offers in this market. It is so hard to make plans when you don't know how fast things are going to happen. For instance, my husband PAL wants to get a car with better power steering when I'm thinking that he should stop driving and we should get a van. There are so many things to try to figure out. Taking things one day at a time is certainly the best advice for the emotional stress, but what about having to plan ahead in practical matters? Any input would be appreciated.

 

[Al]

I believe in the plateau concept. It seems to have been that way with me. I quit Lithium as did some others I know because we felt it was speeding up our symptoms. It's slowed a bit again for me. From what you describe your hubby might want to think seriously about quitting driving before someone gets hurt. We don't like it but it has to be done. Live for today but plan for tomorrow is a good motto. Try to stay at least one step ahead. Once it gets ahead of you it's hard to catch up.

AL.

 

[hopingforthebest]

progression

ALS is so different for each paient but your husbands onset and year diagnosed are similar to my husbands. He progressed slowly and then quickly and now is leveling a little. My husband knew when he could no longer drive etc. A vehicle for him to drive was never a thought with us. When he worked and could no longer drive, he had a co-worker pick him up etc. Now he is home.

I compare ALS to a "thief in the night". You never know when it is rearing its ugly head to take more from your loved one. When things seem calm you are silent and grateful but knowing it could get worse. Praying now that he would stay right where he is.

Just hoping for a cure real real soon!

 

[Zaphoon]

Making The Home More Wheelchair Friendly

My sister that has had MS for 20 years attends a church here that has a team of volunteers to build ramps to doorways for handicapped access. It doesn't cost a dime to the person they do it for.

My brother-in-law mentioned this to me just in case I should have the need myself.

Perhaps there are churches or other organizations where you live that may provide the same service. What a great service to the community, huh?


zaphoon

 

[clewbcg]

Saying out loud what I'm afraid to even think.

Thank you for all the imput. I appreciate the concern about his driving, but he tests out okay on that for right now. His hands have more problems with fine motor coordination than with gripping and steering. Nevertheless, he has a co-worker who will be driving him to work starting next month. We have some special problems with our house beyond ramps as we live on the side of a mountain. We are not members of the Mormon Church but local members have been wonderful in offering their help, and I know they would build ramps when we need them. Our biggest problem with a wheelchair is that we have no bathrooms that will be accessible. Besides the issue of narrow doorways, they are all set up so that the toilet is tightly fit between the wall and the tub or sink.

Anyway, I guess I was really looking for stories of rate of progression from PALS who started out slow to get an idea of how long it took people to get to total dependency or to pass on. It seems so horrible to say this that I have not asked this question out loud until now. We have so many life style decisions to make, and as Al said, you want to keep ahead of the game. I have used many of the ideas from this wonderful site to try and do this for practical every day life including: hand splints to delay curling of the fingers, velcro on pants and shirts, modified dining utensils, hoyer lifts, advanced communication computers, personal voice enhancers (my husband teaches) and a bidet for the bathroom. It has been so great to get these ideas from this site and have the time to research sources and funding. But we have major decisions to make. We have to decide if we move closer to his work or closer to family, remodel the house or move, rent short term or buy something handicapped accessible. Do I get another job or stay home to be available for full care for my PAL. My PAL and I just got married in our 50s a year before his diagnosis and I'm not from here. Do I move him when he is fully dependent on me back across the country to where he has family and friends and I don't? Can we afford to do that? Can I afford to do that and then move again when he isn't there any more? Can we sell our house? (Probably not in this market.) Do I start trying to get back into the workforce here to plan for my own future? I apologize for the long post-I sound like I'm raving but I just need to have some idea of what to do for our future and my future. Every attempt at a decision seems to wind up in circular thinking. We have already spent money on plans that were based on his slow progression that now won't work, and we don't have unlimited funds. I feel so sorry for young PALS and for caregivers with young families and full time jobs and it seems wrong to even complain about my situation. I'm very scared that I will wind up alone in my 60s in a strange place, broke and physically and emotionally beaten when this runs its course. I have been seeing a therapist and this has helped emotionally but can't someone tell me how long this nightmare will continue. How can I prepare for what lies ahead for me? We have a wonderful ALS clinic but our doctor will not speculate on length of time for my PALS. I know everybody is different. I just want to have some idea of what slow progression means in the most general sense. Two years more? Ten years more? There must be some kind of general length of time that applies to people who don't go fast (2-5 years) and who aren't Stephen Hawking (more than 20 years). Should I just not try to plan for my own future? Do other caregivers think these thoughts? Is it hurtful to the PALS on this site to hear a caregiver wondering how long their PALS will have to live? I love my husband and would hate for him to see this post. We have been more and more open in talking about all this in the last two years, but these thoughts are too awful to share with him. He got very upset (understandably) when a friend asked me where I was going to live when "it was over". Sorry again for the long post. Thank you for letting me vent. This site has been a lifesaver and I don't want to abuse it.

 

[Al]

You're not abusing anything. You have valid concerns and it seems overwhelming now. I think you need to talk to your husband about most of them to see how he feels about them. Not all at once but maybe one or two per day. It irritates me when my wife makes decisions without asking my opinion. You have a lot of things to look at. Our situation was not as complicated. Sorry I don't have a lot to offer in the advice dept. but maybe some of the others will.

AL.

 

[BethU]

No, it is not hurtful to hear that caregivers wonder how long it will go on ... and that they worry about what will happen when they're on their own.

These are not bad thoughts. They are absolutely normal, intelligent, and necessary thoughts, because you DO need to think of your situation when you are alone and you need to plan ahead.

I'm going to go WAY out on a limb here and say that if I were in your position, I'd go with the least optimistic as far as planning. That would be two years. If you can come up with some strategies or solutions in case you are alone in two years, it might help ease your mind, knowing you have specific plans to cope.

The probability is he will live longer, and that would be wonderful. And if you have your transition strategies in place, you will be able to apply them later than two years. The longer he lives, the more time you will have to enlarge your plans.

I'd look for resources right now. Do you have kids? Any family and close friends nearby? Are you a church member? Have you joined ALSA (ALS Assoc. of America)? ALSA is a great organization, and their reps know solutions to every problem you can imagine. It's free, and I know they will provide someone to counsel you. In fact, I'd start with them. Most health insurance companies provide social workers to help counsel in the case of serious illness, too. And your therapist will be invaluable.

I hope this helps a little. I really sympathize with your situation. Please feel free to "vent" here a lot. That's the whole purpose of the forum.

Hang in there. Let us know how you and your husband are doing.

 

[mndireland]

progression

We had the very same question, my mam started off slow and sure enough it got faster, the progression is really fast. We asked the doctor the other day can it slow down or get steady and she said no, if you have a fast progressing form it stays fast. So that is the short answer im afraid.
My mam started in the hands being weak and now a year on they are almost no use, but still she can hold a fork for a bit, it falls out of her hand a few times while she is eating, her legs are very weak, her speach is slurred. She chokes a lot and now we use a thickener in drinks and fluids etc, we are on a soft diet, so mainly pureed food and soups, porridge etc.
Her breathing is really bad, been on the nippy 5 months and now she is in the later stages of the disease so we use it quite a lot. We were told she only had hours to live last week, today she is home with us again and looking good, tired and down but still talking and laughing with friends. So prayers can be answered.
Take care

 

[hopingforthebest]

ALS progression

We had many plans when we retired here close to the kids and my husband started his "2nd career" after retiring from his first job of 30 years! He only got to work 2 1/2 years before having to stop working. He also taught college level, part time. We are in our 50's. ALS was a shocker and we are just now planning for what might be ahead of us.

One thing I am so grateful is that we relocated close to our adult children. They have been so helpful and when I read posts of those far from friends and family I wonder how they do it! Our new neighbors are great and so is our church but our sons are who I reach out to. I am not one to ask for help and try to do things myself. This disease has taught me to ask for help more and to be grateful for any help we get.

As far as my husbands needs, I have the biggest support from the ALS clinic and now with Hospice for care needs. He can still walk, as his legs are not yet affected. His big health issue is the breathing and is on the bipap 20 to 24 hrs a day. Right now, the bipap is taking care of the breathing issues but when the time comes and it does not, my husband has made a decision not to vent/trach. We will cross that bridge when the time comes. For now....I pray (on my knees) for a cure for all ALS patients and ask for his progression to stay right where it is and not to get worse.

Someone might think this is not being realistic but to me....God is bigger than this stinking disease and He will let us know what steps to take and when.

I am glad you are getting help in talking to someone and hope you get support from this forum of wonderful PALS AND CALS. ONLY WHEN YOU ARE LIVING WITH ALS, CAN YOU UNDERSTAND OR COMPREHEND WHAT WE ALL ARE GOING THROUGH.

Nothing you ask here regarding your caregiver questions will be judged. We are all in this together.

Patty

 

[clewbcg]

Thank you

Thank you all so very much for your replies. I guess we all have our meltdown days and yesterday was mine. The fact that no one on this site judged me for my thoughts is worth a dozen visits to the therapist. Al, I'll remember what you said about sharing decisions with my husband. He has a right to know about any big changes that I'm thinking about, and there is nothing wrong with his mind. Also, it's a good idea to bring things up in little batches that we both can handle. When I don't talk to him about things, we get to a point where all the issues become too much to handle. I am very thankful that his attitude towards me is so great. He has not taken any of his anger and frustation out on me. I just read some new posts today about PALS being mean to their caregivers and that must be so hard for both the PALS and the CALS. Beth, thanks for going out on that limb. It really helped for me to think that way--i.e. plan for two years and hope for more. Hopingforthebest, you are so right about ALS teaching us to accept help gracefully. I have always been very independent and private and it is difficult to let others help. I don't have any children and my stepchildren are across the country and in school, but neighbors have been really great. Oh yes, I didn't even know about ALSA-I'll get right on that. Thank you!

 

[JACKIEMAX]

I Am Always Amazed When I Read Some Of Thes Posts Bec. They Are A Mirror
Of My Own Thoughts And Heart. I Hope I Can Remember The Things I Want
To Share Here. By All Means, Have Your Husband Be A Part In Your Daily
Decisions, Even If It Is Very Simple. They Are Still The Head Of The House,
Remember, Even If They Can't Do The Things They Used To.

Also, Plateaus Are Very Very A Definate Thing. My Husband's Condition Will
Dip So Quickly That I Have Wondered If He'd Live Through The Night, Only
To Have Him Wake Up Ok The Next Morning And Stay That Way For Weeks. I,
Too, Have Planned For 2 Years And Have Now Had 3 Years With Him, But With
Als, That Could Change At Any Time.

His Main Problem Is His Breathing, And Ithe Bipap Is Literally Keeping Him Alive, And He Knows It. Hospice Comes Every Other Day To Give Him An Enema. They
Use A Hoyer Lift To Get Him On A Potty Chair, And Then Back To Bed. He Can
Sit Up Long Enough To Be Fed, As His Hands Cannot Hold A Fork Anymore.

It Is Hard To Understand Him When He Talks Through His Mask, And This
Sometimes Is Very Frustrating For Him. His Mind Is Very Sharp.this Is A Monster Disease And We All Understand Where You Are Coming From. I Know
My Husband's Heart Could Give Out Any Time Now, Or He Could Still Be
Here In 6 Months. But I Know He Is Miserable, And If I Did Not Have The
Support Of Family, And This Forum Family, I Don't Know What I'd Do.

Jackiemax

It