Resolved question:
My brother John Bunting (bunting.jr@gmail.com) ( needs online chat consultation about his worsening leg weakness resulting basically from kidney damage from his amyloidosis.
He seriously needs online help because he almost cannot speak intelligibly because of his cleft palate. His speech is almost totally unintelligible, even to me. Thus though his doctors and treatment are excellent, he is unable to speak normally vocally to them. And he is not informing them meaningfully about this now his primary and very serious worry: weakness in his legs. But he speaks totally effectively and intelligently online!
John is 74, of Quincy IL, a retired electronics engineer, having worked among other jobs for McDonnell-Douglas in St. Louis on the antennas for the Apollo spacecraft that went to the moon. Since retirement and as recently as two years old patientago, he was a primary Habitat for Humanity worker in the construction of seven H4H homes in Quincy. He has always exercised, until two months ago was still using his home walking machine several times daily, and earlier for intentional exercise almost daily rode his bicycle and worked out at Quincy's primary fitness facility. His home is a "cottage" in a superb retirement/healthcare complex: Good Samaritan Home; however his communication with the Home's medical staff is limited in the same way as with his doctors above.
He being treated primarily in Quincy by hematologist Karthik Koduru MD, (217) 223-8400 of Quincy's primary Blessing Hospital's cancer treatment clinic, with some connection to the Rochester MN hematology clinic. Happily, his CyBorD chemo (cycle #6 currently, will go to cycle#8 ending in August) has stopped creation of amyloid cells. But his leg weakness has progressed until he now must lift with his arms to get up from a chair, and use his arm to lift his leg into his car.
He is very concerned about swelling in his ankles. As a result, he is unwilling to do hardly any exercise, but spends almost all of his day either in his recliner (with laptop) with his legs raised or in bed.
His leg weakness is now his main worry. It breaks my heart when he tells me his big proud accomplishment is to walk the 200 yards to the dining room in the complex. It breaks my heart also that he is now clearly unable to play golf with me when I visit him or help me with chores when he visits me, customarily in September--
I believe he needs to get back to doing as much exercise as he is able to do. He needs your advice to encourage and guide him to do such exercise. I believe encouraging circulation in his legs by using/exercising them is more important than elevating them all day.
He is concerned about this also, and has just begun researching and using exercise, but only such as while sitting in his recliner, elevating his legs straight out above the footrest, and lifting them repeatedly!
I believe MD advice to encourage and guide him will be extremely helpful to him, and that he will follow your advice.
I suggest advice from a General Practitioner, or a Sports MD, might be more appropriate than a hematologist.
Would you please help my brother?
If necessary, I am willing to pay for your help to John.
He is:
John R. Bunting, 2130 Harrison St #48A, Quincy, IL 62301-6756
bunting.jr@gmail.com
Phone BUT USEFUL ONLY FOR TEXT, NOT USEFUL FOR VOICE: 217-316-6533
I am:
David R. Bunting dave8361@gmail.com 360-496-1435
114 Mountain View Drive, Packwood WA 98361
Submitted:
4 Days
Category:
Neurologist, Medical
Hello,
Thanks for your query
I am one of the In-house physicians at the DoctorSpring.com. We really feel sorry for your brother's condition. But I am afraid at this point we are unable to provide online chat service or phone consultation due to busy schedule of our physicians. But, I request you to ask any specific questions related to his condition we will try our best to help you. I would like to give a brief history of patient's conditions like, what is the main complaint? when has it is started? any associated morbidities or diseases, medical history and any previous investigations done before, previous reports if you could upload. This will help us to understand his condition better and to guide you in a best possible way.
Looking forward to your reply
Regards
My description of his complaint, other treatment and history given in my first communication is complete and should enable you to answer.
I add that his diagnosis of amyloidosis was last Nov. 2014, that he has been in CyBorD chemo treatment since January.
His kidneys are damaged by the amyloidosis. His stem cells are no longer creating the amyloid cells.
His 24-hr protein has fallen from around 700 in January to about 450 last month. As you know, normal is under 50.
His primary complaint is the weakness in his legs as I reported. I believe his leg weakness is caused primarily by his being in his recliner most of every day. Until recently he exercised regularly, almost daily and vigorously, riding his bike, using his home treadmill and using the local excellent and large fitness center.
I believe his leg weakness is caused by lack of leg exercise. Very concerned with swelling in his ankles, he is in his recliner most of every day. Together with his sleep time, he is off his feet perhaps 22 or 23 hours of every day. We know that bedridden people lose strength in their legs. That is I believe the reason for his leg weakness.
I hope you can give him advice and encourage him to get out of his recliner, get back on his feet, go back to exercising his legs: walking, riding his bike, going back to the fitness center.
Hello,
Thank you for posting your query.
I have noted John's medical history and his current clinical condition. It is unfortunate that he has a hematological malignancy and on top of that, he has developed weakness of both legs, hampering his daily activities.
Weakness is most probably related to his chemotherapy. In addition, vitamin and nutritional deficiency may play their parts.
Passive and active exercises would immensely help him.
Passive exercises could include lifting his legs by a physiotherapist or a caregiver a number of times, at regular intervals. This can be done while he is lying on bed, or while sitting in chair. John can himself do it by lifting his legs using his hands.
Active exercises would include making an effort by John to move his legs, whatever amount is possible, as many times as possible, while sitting or lying down.
In addition, we should try to do nerve conduction studies to ascertain the cause and degree of nerve damage.
I hope it helps.
Unfortunately we only communicate via emails, and I can help you only through this mode of communciation.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist