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daddys_little_girl

New member
Joined
Jul 26, 2012
Messages
7
Reason
Lost a loved one
Diagnosis
06/2012
Country
US
State
WV
City
Charleston
Hello everyone,

I have spent a few days just reading various threads on this website and am amazed at the wealth of information and support available. Having resorted to the internet after my Dad's diagnosis of MND/ALS a month ago, I am relieved to find a place where I can get straight answers from those who are knowledgeable. I do have questions...lots of questions.

My Dad is 62. He started having muscle twitching in his left hand almost two years ago. Because of his insurance situation (and some bull-headed denial) he waited to be seen by a neurologist until a month ago. His little finger and the one next to it have drawn up. He has lost almost all of his muscles in the left arm and it just hangs by his side. His shoulder is slumped. He has visible, constant fascillations in his left arm. The neurologist diagnosed him and sent him to an ALS specialist. After MRI's and nerve conduction studies (from both Drs) and a muscle biopsy from the specialist, our worst fears were confirmed. The specialist has also noticed fascillations in his right leg. The specialist feels that it is a rare strain of ALS...bibroncial...and that the disease is in its early stages.

Does anyone out there have this same strain? Internet research has provided very little information. I did read that this strain stays limited to the upper body for a while before progressing to the lower limbs. Would the twitching indicate a more rapid/aggressive disease?

Also, because my Dad's muscles twitched in his left arm for over a year before he lost his strength, can I assume that he will have relatively good right arm function for a while longer?

My Dad has had an episode of shortness of breath while performing a relatively easy task...something that he was fully capable of doing a few weeks ago. He is a very active man, but is not in the best shape. (if that makes sense)

My Dad is still in the denial stage. When we speak I listen to him and try to keep the conversation light and positive, letting him discuss his prognosis on his own terms. We do this by phone ( I live out of state) He has been receiving information from various people about stem cell shots, herbal medicine options, etc. I want to support him in any way that I can, but wonder if I should be more proactive. I could use some advice on this as well.

Thank you and God Bless you all!
 
Hello daddy's little girl (hey, I'm one of those too!)

I'm so sorry to hear your dad has received this terrible diagnosis. You have come to a good place and will get lots of help, info, and support from everyone! (BTW, you will want to make your posts in the General Discussion or PALS parts of the forums as a lot of folks don't check this part of the forum for serious PALS posts)

I have never heard of bibroncial ALS... is this spelled correctly? A search also produced no results. Can you describe what makes it different? I too have a relatively uncommon ALS onset... hemiparetic... it went all over my right side first before spreading to the left. The onset and progression is different for every PALS, so I don't think anyone can really comment on what you can expect with your dad.

As for the respiratory symptoms, be sure to mention these to the neuro. He may need to be on BiPAP. His lung function should be followed very closely... if he goes to an ALS clinic, they will do this.

Denial is common... I don't think I know of a single PALS who didn't go through a period of it... some folks live in it for years! You know your dad best and know the right approach to talk to him. It would seem to be best to let him bring it up since that is the approach you are already taking. If he doesn't come around soon, you might want to gently broach the subject when the timing seems right.

PLEASE be aware there are many many scams out there that take advantage of PALS. Start researching them now before he decides to try one and spends so much money on ineffective treatments. A good place to start this research is on this forum by using the search function to read old threads about these treatments. ALS Untangled is also a fantastic resource that many of the ALS clinicians participate in. There ARE some FDA approved stem cell trials and drug clinical trials, so definitely check into those if he really wants to try something like that... his clinic neuro should be able to hook him up.

Please feel free to ask all the questions your heart desires and we will do our best to answer them! Welcome to the forum! :D
 
No idea about the strain he has, but...

Anytime someone is short of breath--especially doing something easy--that needs to be checked out. Remember, not all things are ALS related at all.

Most have weakness before the twitches. Not all twitches are caused by ALS--so that is hard to answer. He can check into clinical trials in his area. Most of the larger ALS centers have them going on.
 
@notme,
Thank you for your advice about the breathing. I whole heartedly agree with you. Being so far away from him right now makes me rely on information from third parties and leaves me feeling helpless. He did have the weakness first and was completely unaware of the muscle twitches. He cannot feel them at all. He had no idea that he had twitching in his leg until the Dr told him last week. (the twitching is visible and constant) He has begun to lose weight, which I can only associate with the upped metabolism due to the twitching in his arms and leg.

I do plan to look into the clinical trials in his area. He has expressed interest in participating. I spoke to his wife today. He has recovered from whatever "spell" he had with regard to the breathing. Both my sister, an RN, and I have advised her to watch his breathing closely and take him to an ER if he appears to be in distress.

He had his first PT appointment today. They tested him and told him that he has lost 80% use of his left arm and 10% use of his right arm. I did not get any information about his legs. He does get very fatigued by mid afternoon (every day) but tries to remain active.

He started to notice his weakness/twitching not long after being placed on a statin. He informed his GP about cramping/weakness a few months after starting them and she advised him to only take one every other day. He ceased taking them after his diagnosis and has begun to take CoQ-10 daily. I am not certain if there is a true correlation with exaggeration of symptoms with statins or not, but I have seen several folks here advise against them with an ALS diagnosis.

I am still left wondering if he is truly in the beginning stages or if he may be further along. I just moved out of state two weeks ago and am trying to decide if I need to move back to help care for him.
 
Ugh...my reply went to a moderator. I hope that it gets approved soon :)
 
Hi,

I think one of the reasons you are not getting many replies is your use of the term bibroncial; I have tried 4 separate search engines and cannot find it at all.

Have you checked your spelling?
 
Thank you!

bibronchial AKA "flail arm disease" AKA "man in a barrel"

My Dad had his first PT appointment today. He was told that he has lost 80% use in his left arm and 10% in his right. No news about his leg.

I should have also noted that he was placed on statins two years ago. He complained to his GP of muscle cramping/weakness and was advised to only take a statin every other day. He stopped taking his statins after his diagnosis and started taking CoQ-10. I am unsure of a correlation between the statin use and exaggeration or acceleration of the diease symptoms, but there are many in this forum who advise against them when diagnosed with ALS.
 
@notme,

Thank you for your advice. I whole heartedly agree with you! He has recovered from his "spell." Both my sister, an RN, and I have asked my step mother to monitor his breathing and take him to a hospital if he appears to be in distress again.
 
I answered earlier today, right after you first posted, but it's still MIA. Maybe it'll come up one of these days!
 
This is not a "rare strain." At least, we were never told that. Judging from all the pALS that WALKED through the Emory ALS Clinic with their arms just swaying, I think it is accurate to say so.

My husband still walked until 3 days before his death, when he suffered a horrific fall. He had no use of his left arm, whatsoever. His right arm was barely usable. When he walked his arms just hung and swung with his body's momentum.

There is no way to predict the speed at which the disease will progress.

I would suggest that if your dad has not already been fitted for a power wheel chair, that he look into that as soon as possible. Not having the use of your arms causes tremendous balance issues. This in turn leads to very dangerous falls. If he does not have a BiPap, he needs to get one as soon as possible.

I'm very sorry about your dad. I wish you and your family luck in dealing with this journey.

By the way, is your father on Medicare? You mentioned insurance and a denial, so it sounded as if he has private insurance. With a d x of ALS, he will be automatically approved for SSDI and Medicare. (There will be a 6 month wait for benefits, however.)
 
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If your father has a firm ALS diagnosis, he needs to go ahead and start using a BiPap machine. Studies have shown that it is very beneficial to ALS patients even in the early stages of the disease.

Also, this thread should be moved to "Current Caregivers". You will get more responses.
 
Thank you for the advice, Missy and CJ. My Dad does have a firm diagnosis and I will speak to his wife about the BiPap machine and wheelchair. I had not thought that we would need those so soon. My Dad is on Medicare. It was his own denial of symptoms that I was referring to. He just refused to go see a doctor. I am not sure now if an earlier start to the diagnosis would have been more beneficial or not. So many go through what seems like endless testing before a true diagnosis is confirmed. Dr. Alshirabtai at the Kirklin Clinic of UAB (in Birmingham) mentioned that he felt this was most likely a rare strain (his words) but that he would not be able to verify if it is "flail arm" or regular ALS until the follow-up in four months. So now we wait and try to make the most of every day. I am encouraged by your husband's mobility for such a long period, CJ. I am so very sorry for both of your losses. I hope that you will both continue to give me helpful advice as my family starts this gruesome journey. Thank you for your time and God bless you both!
 
Glen was still walking until the day he died but lost most of the use of his arms. His neuro (an ALS researcher before he left research to become the best care provider an ALS patient could wish for) actually said developing "man in a barrel" over time wasn't that uncommon. Seriously when one already has a rare disease that progresses differently in every patient, rareness ceases to have much meaning.
 
This is an excellent series of 3 videos.
 
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