Questions for my mother's neurologist

[nsmith555]

Tomorrow we go back to the neuro after receiving the results of the blood tests to rule out myasthenia gravis and B12 deficiency (both were ruled out), so I'm assuming the doctor will be gravitating towards the diagnosis of Bulbar ALS for my mom.

I want to ask some questions, but I'm not totally sure what questions I should be asking at this point and I'm hoping some of you can provide me with suggestions on areas to discuss with him, providing he doesn't bring them all up himself, of course.

Any help is appreciated!
God bless!

 

[Al]

Hi there. A couple of things I would bring up are is she having swallowing issues yet and when should you be thinking about a feeding tube and does she want one. Breathing issues should be addressed. Does she have any chest or diaphram weakness yet? Does she want a Bipap if needed and does she know the options?
Hope this helps. AL.

 

[JACKIEMAX]

hello all my forum friends

i have been sitting at this computer for almost an hour while my husband is in bed waiting for me, but i could not stop reading. i have never seen or read such an outpouring of love for each other as the als patients and their caregivers here.

i read the one about a lady's husband dying in his sleep. i just sat here and cried. all of us caregivers know this could happen to us at any time.

i wake up sometimes during the night and lean over to make sure my husband is still breathing. i read too that some of the als patients are in bad moods, and are experiencing dementia. are these symptoms of als? so far, my husband is in a good mood, and his mind is very sharp. will i necessarily be looking for these symptoms to occur?

i have made some friends here. paty and i e-mail each other regularly and 'vent' to each other.

thank all of you for posting, and God bless you all.

jackie

 

[Al]

Hi Jackie. Once again I'll have to say that most ALS patients are different. The bad moods are not a common thing but possibly with the internet we hear about it more because there are more people here talking about problems with ALS. Also you are more inclined to talk about such things if you are not face to face with someone. Dementia was never until recently thought to be a symptom of ALS. They always said the mind remained intact but are finding that some patients are getting fronto temporal dementia (it's late and not sure if I spelled that right) but it is still a fairly small percentage. I'd not worry about it if I were you. If it happens there is not much you can do about it and it probably wouldn't won't happen for quite a while if it is going to.
AL.

 

[paybackranch]

Fronto temporal dementia can cause and often predates the bulbar form of ALS in those cases where both are presented. This is the case of my husband, Jerry. He was a 'difficult' man before the ALS was diagnosed with bi-polar exhibited type symptoms. From what I have read to date, FTD is often misdiagnosed as bi-polar. I probably married my husband when he was already presenting as bi-polar looking back. He would have been the right age for the FTD to rear its ugly head (mid 50's). We have been married 14 years this past May. He was a brilliant man, high energy, charming and ruthless (the ruthless I discovered AFTER I married him). He is wicked when crossed and he is now Jerry to the 10th power. On one of the FTD caregiver forums and in some research papers that I have read, personality characteristics can become magnified by the FTD. My husband is now a bull headed, ruthless con artist who no longer can 'cover' effectively. There is some relief in the fact that those wicked characteristics that were reserved for family only now are there for the world to see. He is in the end stages of ALS and in the mid/late range of FTD. The combination of ALS and FTD are highly aggressive and right now both are racing neck and neck to end his life.

Melanie

 

[Al]

I am sorry to hear of the difficult time you are having Melanie. ALS is bad enough without FTD thrown into the problem. I hope you can find some solace here.
AL.

 

[paybackranch]

I had hoped to care for Jerry to the end, but his repeated actions (running away from home, involvement with the police either directed at me or when they went to look for him) eventually got Adult Protective Services involved. This whole story is a nightmare that I don't have the time or energy right now to delve into....but APS sent him to a lock down unit in a nursing home 75 miles away. I do my best to stay on top of things, but this is a hell hole of a nursing home and Jerry is doing his best to alienate the staff---including posting a note on his door that the director of nursing is trying to kill him. (At least he isn't blaming me for a change) He has been there a year now and is now unable to 'cover' in front of strangers. I drove to the nursing home on Thursday to take him to the hospital for insertion of a Nasal Gastric tube since he has been unable to eat for two weeks (imagine a nursing home not noticing him losing 11 lbs). He was hysterical while there and the nurses at the hospital had to sedate him to get the tube in. By morning, he demanded it to be taken out...he said that they also were trying to kill him and that I wanted the tube in so that I could put stuff in it to kill him. He has an ALS clinic meeting on Tuesday and a scheduled PEG tube surgery on Wednesday. No way to feed him or hydrate him until then. I don't know if he will be able to survive the anesthesia and surgery....and frankly, it will be a blessing if he can't. Please don't be harsh with me saying that....he will most likely will have to be restrained to be fed and is full of hate. This is no way to live....and no way to die. I can't get him moved to another facility (again, a long story) and I have run out of options. I don't know what to do, but I know that I have done all that I can. Those of you who have a LO who has ALS and has still has his mind intact...............you are blessed even though you both are dealing with this horrible disease. My husband is 'alone' in his mind and there is no changing that or his circumstances. Those who know my entire story know that I have moved heaven and earth to help him. I am all that he has. He has driven everyone else away over the years. I want him at peace.......

Melanie

 

[Al]

Melanie,you should not feel guilty. Sometimes the best we do just doesn't work. You've done your best, fate or God will have to help here now. I'm speaking as a PAL with limited movement but still have all my faculty's or at least I think I do.
AL.

 

[CindyM]

I am so sorry this is happening to you, Melanie. You sound like a remarkable person with great inner strength. I am sure Jerry knows on some level that you are doing everything humanly possible for him, but even if he does not know this, we all commend you! Cindy

 

[crystalkk]

Melanie,

I am sooooo sorry that you are going through this. Please try not to beat yourself up in side with guilt it is not your fault. They are both horrible diseases and you have to go through this with your husband with both of them at the same time. You and your husband are in my prayers. please take care of yourself.

 

[fiddleplayer51]

Melanie,
I can't imagine what it must be like to walk in your shoes day after day. There's absolutely no reason for you to think anyone would chastise you for statements you made in your post. The combination of ALS and FTD has got to be the worst of nightmares both for the PALS and the CALS. You must be exhausted after all you're going through. How I wish I could help you somehow. At least here on the forum you can be truthful about how you feel and make statements about your situation without holding back. You are in a living hell right now and I wish strength for you daily until the end when you can finally rest. I'm so sorry for how much more difficult your situation is than for many other's. I hope you will post whenever you need to and say whatever is on your mind.
Take care, Melanie. This too shall pass.
Peace to you,
Jane

 

[andyvaughn]

Melanie, I agree and second what every one else said. Sometimes the most loving, selfless wish we can have for someone is that they go in peace, and that the suffering ends. My grandmother lived for 10 years, bed bound, with her mind and body gone to Huntingtons disease. Everyone thought I was a monster for wishing the end for her, but I knew she wouldn't want to be that way. As much as I loved her, it was a blessing that she was able to finally leave her sickened body and mind and be free. You are a hero, this is a very hard road you are walking... I wish you all the courage you need.
Andrea, wife of Pals Jim