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jwife

Distinguished member
Joined
Jul 10, 2010
Messages
163
Diagnosis
05/2009
Country
US
State
Alabama
City
Lincoln
My husband was diagnosed in April 2009 and we have watched his progression. Everything so far has seemed to be a slow process where he slowly loses skills. He had his PEG tube placed on Feb. 17th. The sedation and pain medicine made it a little difficult to regain his ability to stand for transfers and to walk short distances with his walker. But he was back to doing both a few days later. He was hospitalized again on Feb. 24th for sudden dizziness, blurred vision and low blood pressure. After a 4 day hospital stay, he was released with a diagnosis of low pressure due to medications for hypertension, swelling in his feet and prostate medication. He has not been able to stand for transfers, much less use his walker, since that time. We cannot decide if this is the ALS progression or the result of being in a bed for 4 days. The therapist believe that it is just from the hospital stay and that he might benefit from rehab to regain his ability to stand. Personally, I have not seen him regain any skill that he has lost.

Anyone else with similar experiences? Anyone who has gone to rehab and seen improvement?

Also, please be aware. He was in the hospital from Thurs night until Mon night, but was not able to transfer to rehab because the doctor coded the visit as "Observation". He was not considered "Inpatient" so he did not qualify for a rehab stay. Talked with a Medicare supervisor and Doctors are allowed to keep a patient for an unlimited number of hours of observation without actually admitting them as an inpatient. I am still appealing this with the hospital, but don't expect to make any gains. :-(

Janis
 
My PALS was in hospital as well for a broken limb. After that, she never regained her ability to use her legs. She was laid up for a couple weeks though. My pals was not interested in rehab to try and regain her limited ability, which was already weakened considerably from the disease.
 
My husband has benefited greatly from ot. He had frozen shoulders, and now he has full range of motion in both. He has actually regained some ability to move his arms, too. Unfortunatley, there was a miscommunication about his PT, and it was stopped for about six weeks. He lost so much during that time it was unbelievable. When he started PT again, he started to improve in his ability to transfer, pivot, and assist in standing. In short, I really believe that OT and PT help.
 
After my peg tube surgery I have not been able to get myself in and out of a regular bed since. That was in Dec. and I had both PT/OT working with me. When ever I get super stressed or have illness or pain it sets me back.
 
Similar situation. Since my partner stayed in hospital last week for 3 days in order to be given Bipap, his ability to walk with a stick has diminshed. We are trying a walker for added stability and he managed 20 mins around a toy store yesterday. This was after he claimed his legs were 'giving in' and he could not walk even a few steps. He had a fall which knocked his confidence. Will the walking stop overnight? I feel that once in a wheelchair he will not wish to walk at all, not even a few steps. Dreading PEG procedure now.
 
Sorry in advance if I'm writing this in the wrong area but I am kind of freaking out right now. My fiance also has been walking just with a cane for over 4 months now but over the weekend had two falls and it is obvious he now needs a walker which we are getting this week. I'm pleased to see the discussions above that those using walkers can get around for over 10 minutes. With a cane he can barely make a city block. He definitely does not want to be in a wheelchair but I see that day coming soon. Question to any of you - he just told me last night his tongue was feeling fat and that is usually a sympton of when your speech deteriorates. He has had no issues with talking and is still working full time. He also mentioned his neck is feeling harder to hold up. This really scares me. I thought we wouldn't need a wheel chair until he couldn't walk anymore but now I'm wondering if we will need it for these other reasons. Do you think once these things happen the progression speeds up?

What is PEG procedure? Are people happy with it?
 
WOW this was a good thing to read because they wanted to peg tube my husband 4 weeks ago but he said I want to think about it for a while, having ALS and having a surgical proceedure seems to be risky especially for my husband as he has bulbar onset ALS this pays thinking about if it does destroy your physical abilities in some way, however no matter the type of ALS onset you are dammed if you do and dammed if you don't.
 
I want to just assure Dani and others that having a wheelchair in place and ready to use isn't likely to change the patient's timing in choosing to use it. I know of several PALS who had their powerchair sitting in a corner until needed. In my case I needed it the day my first one arrived, yet I still walked a lot within the kitchen, stood at the sink and stove, etc. Having a wheelchair makes it possible to gain a lot of energy, since it isn't all being used in walking throughout the day.

There are stories like Rox's regarding PEG surgery, and I personally am very interested in all of it--both the good and the bad. However, if the PALS wants to PEG, you should realize most of these have success, in that the PALS later says they're glad they did it. I'm not trying to pressure anyone to do it or not to get the PEG, but think the picture needs to be seen without an immediate fear; nor, for that matter in a cavalier way. All surgery follows our signing forms telling us loads of things that can occur.
 
I thought of one more thing... when we fall, usually we're already losing our strength. After hospitalization occurs, the weakness has simply progressed. In my own mishaps, I've seen this happen--I'm on the verge of losing something but fighting to keep it. A fall and an injury leave me worse than before and I don't get back to that being "on the verge"--it's now gone.

A rollator walker was my way of getting around for months before getting a wheelchair.
 
I can only suggest that you get the PEG sooner than later. My husband was diagnosed in 4/2010, and got the PEG in 7/2010. He had no side effects from the surgery or the anesthesia. From beginning to end (being put to sleep to waking up), the whole procedure only lasted about 20 minutes. Make sure you find a doctor that is very familiar with the procedure and ALS patients.
 
Question to any of you - he just told me last night his tongue was feeling fat and that is usually a sympton of when your speech deteriorates. He has had no issues with talking and is still working full time.

Don't know where he might have heard that his tongue feeling fat is a symptom of when your speech deteriorates. The usual initial bulbar symptom is slurred speech, and it's usually so mild that the PALS doesn't notice the slurring, but people around him/her do. There are many posts here on the board by BarryG, rose, BethU and others that describe bulbar symptoms, onset, and progression in great depth -- far better than me.

He also mentioned his neck is feeling harder to hold up. This really scares me. I thought we wouldn't need a wheel chair until he couldn't walk anymore but now I'm wondering if we will need it for these other reasons. Do you think once these things happen the progression speeds up?

Personally, no, I don't think that progression speeds up when these things happen. In fact, many PALS first begin using wheelchairs, scooters, walkers and the like well before they start having trouble walking just for fatigue and safety reasons. ALS doesn't give out gold stars for trying to stick it out instead of admitting you need help. But it sure will hand out black eyes, purple bruises and worse to the stubborn and unprepared when they try to take it too far.

What is PEG procedure? Are people happy with it?

The PEG tube is a feeding tube which is inserted through the skin of the abdomen, the abdominal muscles, and the abdominal wall directly into the stomach. Yes, most people like it because it is literally a life saver for PALS who lose the ability to eat and drink by mouth.

WOW this was a good thing to read because they wanted to peg tube my husband 4 weeks ago but he said I want to think about it for a while, having ALS and having a surgical proceedure seems to be risky especially for my husband as he has bulbar onset ALS this pays thinking about if it does destroy your physical abilities in some way, however no matter the type of ALS onset you are dammed if you do and dammed if you don't.

If your husband has bulbar onset, he will need the PEG and it is better to have it and not need it than to really need it and not have it. Choking episodes are scary and unpleasant to watch -- they are very scary and exhausting to go through as the patient.
 
Thanks to everyone for your honest and open responses. My husband went to inpatient rehab this afternoon and will probably be there for 2 weeks with intensive PT and OT services. When this first happened, I thought that the regression was from the hospital stay and spending so much time in bed. Now that a week has passed, I no longer feel that this is the case. I have assisted with transfers and tried to have each day be as normal as possible, and after this much time, he has gained no strength in his legs and actually seems weaker all over. Now I feel that this is just the progression of the ALS that happened at the same time as the hospital stay.

I do not blame this regression on the PEG tube placement. We planned ahead so that the PEG tube was placed before his breathing reached a point that he would require major sedation for the procedure. He was only given the light sedation that makes you too drowsy to care. The PEG tube is doing well and is beginning to form the needed scar tissue around it. Besides, the PEG procedure was on Thurs. morning and he was weak only on Fri & Sat. By Sunday, he was back to usual routines. The PEG tube will be a big assist when he can no longer take his medications by mouth. An example being this morning when he was slightly constipated and I was able to use the tube to give him a small dose of Miralax. Don't hesitate to talk with your doctor about the PEG tube. I do not regret his making this decision. I know that when he begins to really have difficulty with eating and choking, this will be a true blessing for being able to maintain his nutritional needs.

I have not been able to speak to his neurologist about the intensive therapy. I called last week and left a message but only heard back this afternoon when he was already admitted to rehab. I plan to call their office tomorrow to get her opinion. As I have read here before, it isn't always easy to reach the neurologist. (The ALS Team at Northwestern in Chicago being the exception. They always responded the same day when we called with questions or concerns) Too bad we moved back to Alabama to be closer to family during this time.

I will update you all on the progress or lack thereof and of the opinions of his doctors. By the way, his blood pressure has already started to rise and his feet are swelling since they took him off the medication for hypertension. Don't know how they'll handle that.

Thanks for being there and caring enough to respond. God Bless!
 
Also thoughts on the wheelchair. We used the wheelchair as a way for my husband to save his energy for doing the important things like going to the bathroom at home. If we were going out somewhere, we used the chair. He started using the chair more around the house when it was getting harder for him to use the walker. I think that our PALS know when they need to begin to transition to a different way of doing things. Also, I think we can help by suggesting that they try something new just to see how it works. The smartest comment I heard when my husband was first diagnosed was to be sure to plan for what was ahead and start early and not wait until you needed something to actually begin using it. It is much easier to learn to use the walker before you actually HAVE to use it.
A word of caution on wheelchairs. We purchased his first manual chair without using insurance. I have been told that insurance and Medicare will only pay for one chair. If you use them to purchase the manual chair, they then will deny a power chair. I am not sure about this, we just did that because that was our understanding of how insurance worked. He now has a wonderful power chair purchased with Medicare and insurance. This is the first week that he has used it since he has been unable to use his lift recliner.
Hope this is helpful.
 
Find out why they took him off of his BP meds. My husband still takes his, although it is a much reduced dosage due to weight loss and inactivity.

Also, be careful that the OT and PT understand that working with an ALS patient is different. It is crucial that they understand not to fatigue any of your husband's muscles. That will actually damage them. Work them with resistance, light weights and focus on range of motion exercises. My husband starts his sessions with a massage to lossen the muscles. He went from 30 degrees ROM on his left arm to 180 degrees. Needless to say, this has made a huge difference in dressing him!
 
Progression can speed up and then plateau again, but something lost cannot be gained. That's what I've learned from talking to PALS or CALS. ..... For the person who cannot qualify for rehab, how about asking for some physical therapy? Just don't overdo it. If you strain yourself you can lose ground rather than gain it...... Just a comment also to you.... It seems that the hospitals make excuses or don't tell you
the truth sometimes. I find with ALS that "they" seem to think they can snow you or get you to believe anything. I'd rather have the truth in all situations, but you don't always get it. My sister was in the 4th stages of her cancer and we were told she was cured. She had no blood count left and was going into total arrest. We had trouble getting hospice in time to help us. Won't go into details here, but be assured I know what I am talking about. She died at home and hospice apologized. It was the doctors that wouldn't agree she was failing. She lived only 2 weeks from all that. Sad.
You have to stand up for yourself at the doctor's and in the hospital. Ask for what you need, and get explanations for everything the doctors advise. I think I'm considered a pain in the butt when I go to the
specialists with my husband. But I am also complimented by some.
 
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