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How are you dealing with Kennedy's Disease in your life?
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Picture of Bruce
Registered: 09-28-2005
Posts: 654
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It is cold!

It is unusually cold for northern Georgia this morning. It is 13 degrees and the high might reach 34. We thought we moved away from this type of weather. Fortunately, we are supposed to be in the 60's again for Christmas.

My hands and legs are not functioning real well this morning ... the cold makes my hands more clubs than functioning fingers and hands. They just don't seem to want to work. It also impacts my ability to use the legs. I find myself feeling much weaker. Even though temperatures in the house are still comfortable, there is something about the cold that effects the functioning of the muscles.

I wear long underwear, wool socks, a hooded sweatshirt, and even have heat packs for my gloves. They all seem to help, but they don't eliminate the problem.

Do you experience something similar when it becomes cold?
Registered: 10-07-2007
Posts: 6
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Hello everyone, I am 36 and live in Northern Ireland thankfully it doesn't get as cold here as some other members have reported in their home towns.
My symptoms of this disease are still relatively slight but in cold weather my upper lip feels like rubber and seems to have a mind of its own.
For me the problem is having the cold.
I have been bogged down with a bad one over the past couple of days and what scared me is i'm getting strong cramps in my tongue when i'm having a coughing fit. It leaves me gagging for air. After maybe 5 seconds or so the cramps subside and i can talk properly again.

On another topic,I was at the dentist the other day and had to get a filling in one of my top teeth. Well, about half an hour later the whole side of my face was numb, from about half way across my chin, up to my eyebrow and from my left ear to the middle of my nose I couldn't even blink with my left eye and it lasted for 3 hours!!!
Do you think the dentist had gone a bit overboard or because of my facial numbness, on the same side, i was more sensitive to the anesthetic?
I would like to know if others have had the same problem so I can tell the dentist not to give me so much next time!!!

By the way, Merry Christmas Everyone!
Location: Michigan
Registered: 08-29-2008
Posts: 58
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Hello Davey! Happy Holidays to you as well! I read your post to my husband who also has KD. Of course, the best recommendation would be to always discuss your situation with your dentist before you begin any procedure. My husband said he has had similar experiences so, when he goes to the dentist, he will ask if the dentist feels the dental work can be done with no anesthesia. Sometimes if the cavity is small enough and wouldn't normally cause a lot of discomfort they can. But because everyone's situation and tolerance for pain is different you really should discuss these concerns not only with your dentist but maybe your physician as well.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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I have not had that experience at the dentist. I have experienced some cramping and other pain with the jaw. My neurologist mentioned when I had numbness on my left side of the face that it is not necessarily KD that caused it, but some compression on the nerve in front of the ear and slightly above the jaw joint. It went away after a few hours, but had me worried that it was going to be permanent when it happened.
Picture of Bruce
Registered: 09-28-2005
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Spinal Anaesthesia in a patient with Kennedy's Disease

I saw this report on the internet and thought it would be appropriate to post it in our forum.

Reported by: Lee JY, Choi YR.

PURPOSE: In this report, the authors present the anaesthetic management of a 43 year old man with Kennedy's disease who was scheduled to undergo orthopaedic surgery under spinal anaesthesia.Clinical Features: Local REB approval was obtained for this study. A 43-yr-old man with Kennedy's disease was scheduled for open reduction and internal fixation of a left ankle lateral malleolar fracture. Four years ago, he developed a postural hand tremor, and a slight swallowing difficulty. He had been admitted to a local hospital for a work up on 2003. The physical examination revealed fasciculation and atrophy of the tongue and facial muscles, electromyography (EMG) showed large polyphasic motor units in affected muscles, and a laboratory examination showed that serum creatine kinase was elevated at 290 u litre-1 (normal range 26-200 u litre-1). DNA analysis confirmed Kennedy's disease by demonstrating a triplet (CAG) repeat expansion in the androgen receptor gene on X chromosome. Our preoperative assessment revealed that he was 165 cm tall and weighed 75 kg. His physical examination findings were normal, with the exception of mild swallowing problems, weakness of the lower and upper extremities, and fasciculations. Spinal anaesthesia was chosen after an extensive discussion of the risks and benefits involved. On arrival in the operating room, non-invasive blood pressure was 130/85 mm Hg, heart rate 80 beats min-1, and oxygen saturation 98%. Following the rapid administration of 500 ml of Ringer's solution intravenously, spinal anaesthesia was performed at the L4-L5 interspace using a 25-G Quincke type needle. Bupivacaine hydrochloride (2 ml; Marcaine(R) 0.5% spinal, AstraZeneca) was administered. Surgery was started after achieving anaesthesia at the T10 dermatome. Postoperatively, his neurologic status remained normal with no worsening of his dysphagia or extremity weaknesses. He was discharged from hospital without any neurologic complaint on the sixth postoperative day. CONCLUSION: Kennedy's disease typically presents as muscular atrophy, weakness, and fasciculations predominantly of bulbar, facial, and proximal muscles of the extremities. When a patient with Kennedy's disease is scheduled to undergo a procedure requiring anaesthesia, anaesthesiologists should carefully assess patient preoperative status, respiratory function, and inquire about swallowing difficulties or a history of intolerance to any general or local anaesthetic agent. Considerations for general anaesthesia concern possible prolonged neuromuscular blockade and consequent postoperative muscle weakness and a compromised baseline pulmonary function.1 Many inhalation agents have been reported to be well tolerated by the patients with lower motor neuron disease.2 However, it is not clear whether neuromuscular blocking agents prolong neuromuscular blockage. Depolarizing muscle relaxants, such as, succinylcholine, are not recommended. Moreover the possibility of hyperkalemia and of resultant ventricular arrhythmia or fibrillation has been reported in patients with neuromuscular and lower motor neuron diseases by several investigators.3 If muscle relaxation is required, non-depolarizing neuromuscular blocking agents should be considered, and neuromuscular transmission should be monitored closely.

As Robbie2 indicates below, there is additional information on this subject at: KDA Surgery Concerns

This message has been edited. Last edited by: Bruce,
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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Davey - My impression is that the Dentist has several options as to how they induce numbness. In the last several years a procedure became popular that deaden a quadrant at a time and was more effective at general pain suppression than older methods. During one session we had to stop the procedure so I could recover from breathing difficulties I was having. For then on the older procedure, which was more specific to the area being worked on, was used and I haven't had a repeat of the breathing problems. If you relate this to your dentist it he may be able to understand the issues.

I still have to sit more upright than the dentist would prefer. If I get tilted back too far I have swallowing difficulties.


=================
email:rheitzman at gmail
Picture of Robbie2
Location: Vancouver Island, British Columbia
Registered: 10-08-2006
Posts: 58
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ANAESTHESIA CONCERNS AND KD:

The issue of anaesthesia (general or local)and KD patients is extremely important! On the KDA Homepage, near the center, bottom, is a yellow triangle that alerts you to a "KD HEALTH WARNING". Click on that, and 3 articles pop up regarding special anaesthetic concerns for KD patients. As a former nurse, I would advise anyone who has KD and their family members, to read these articles and then print them out. Give copies to your family physician, your family dentist and have copies on hand for emergencies. The article Bruce has posted here is also one you might include. People with KD can respond very differently to anaesthetic agents than what is 'normally' expected, so this is VERY important information for you to know about and for your physicians and dentists to be aware of.
Picture of Bruce
Registered: 09-28-2005
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New Exercise Program

I mentioned in an earlier post that in late November I was fortunate enough to have a Physical Trainer (PT) work with me in my home twice a week. Over the six weeks he visited me, I was most impressed with the improvements he made to my previous exercise program (Smart Exercise Guide) that I have been faithful to for almost three years now. The gentleman focused many of the exercise routines around using proper posture to enhance the trunk strength as well as work on specific muscles.

In early January I finished writing the new "Smart Exercise Guide - Part II." It explains the exercises developed by the PT. I am amazed at how my self confidence has grown with several of these new exercises and how much more stable I am when standing and walking. I am even using a cane again for short distances.

Of course, everyone with KD is at a different point in their lives (how KD effects their strength, confidence, and capabilities). This guide has specific exercises for those who are wheelchair bound and for those who are experiencing some problems walking with a cane or walker. Many of the exercises have different difficulty levels to ensure they benefit more people. Once a person gains more strength and confidence, he can move to a more difficult level.

Personally, many of my problems with walking were confidence-based as much as muscle weakness and balance related. I had too many falls that ended up with some type of injury. Once I had the strength to perform several of these exercises easily, my confidence also improved and we were able to move to a more difficult level of exercise.

The full exercise guide in a PDF format can be found on the KDA web site by following this link: Smart Exercise Guide - Part II. Click on the link after the explanation to download the guide.

I would be interested in how others feel about these exercises or your modifications to them. Are the instructions clear enough or do I need to amplify on them? Do they work for you? Let me know. And, if you see any mistakes or improvements needed, please also let me know. Thanks, Bruce

Updated Guide: On January 22, I added five more exercises to the guide. I am amazed at how well I am doing walking again. I haven't been this comfortable walking in 3½ years.

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Picture of Bruce
Registered: 09-28-2005
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Depression?

One of the more common comments/questions we receive at the KDA has to do with depression. Often it is the spouse/caregiver that is asking the question or commenting on the mental state of the person they are taking care of. They hate to see the person go through this and want to know what they can do about it or just want to express their concern to someone.

Personally, I believe that everyone with Kennedy's Disease has had one or more bouts of depression. Some are able to work their way through it more easily than others, but it continues to be a major issue for the man as well as the caregiver. I do not believe drugs/medication are the answer even though for some it might be a necessary step when prescribed by a qualified psychologist or psychiatrist.

I have often said that the mental and emotional aspects of Kennedy's Disease are as difficult to handle as the physical ones. Frustration over not being able to perform a simple task is something that I still have to live with. I believe strongly that most everyone with KD has to go through some sort of "Nine Stages" (see page 2 of this topic). Acceptance of the health issue does not mean surrendering to it. Feeling overwhelmed is something most of us have experienced. I know most caregivers feel that way at times ... men with KD are not always the easiest to live with (did I say that?).

My daily exercise program is pretty important to me. It helps to have those endorphins rushing through the body for an hour or so each day. It is my drug of choice.

I feel that the KDA chat room on the 1st and 3rd Saturday of each month is especially helpful when feeling a little down. Knowing that I am not alone in this world often is all I need. The 2nd Saturday of each month chat is also an excellent format for those who do not have KD, but are a spouse and significant other, as well as a caregiver.

I would be interested in how you deal with depression. What works for you? Your thoughts would be appreciated. Thanks, Bruce

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Location: Michigan
Registered: 08-29-2008
Posts: 58
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Bruce, my husband said for him, he focuses on other little things that he is still able to do to keep him busy. (I always seem to find little things around the house that need his expertise! especially with the computer) He says it's not really dealing with it, the depression is still there but at least this way he feels as if he's been able to accomplish something and that makes him feel better. It's better than just sitting around not doing anything or resorting to liquor or drugs.

The chats are helpful in the way that they keep him informed of new studies and findings. His hope is to be able to contribute something in the chats that may be of help to someone else.

I enjoy the wives and significant others chats for the same reasons; to be informed and hopefully to be supportive to others and for the opportunity to "meet" new people!
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Great point! Thanks for sharing.

I know the feeling of being able to help with smaller tasks around the house including things on the computer. If we can ease just a little of the burden on the caregiver we are contributing.
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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For me, the depression is worse when I think of things I used to be able to do or that I still wish I could do.

I feel better when I focus on what I can do! I spoke in church on Sunday. The placed a chair and a microphone next to the pulpit so that I did not have to stand. Being able to share my knowledge and faith with others is a true blessing. Also, my belief that life is a time to experience. And this is an incredible, if difficult, experience. Besides, my kids love beating me at arm wrestling or any other physical activity.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, I love your attitude. Thank you for taking the time to share your thoughts.
Bruce
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Registered: 09-28-2005
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February Update On My Progress With My New Exercise Program

I continue to exercise every day. The renewed strength in my legs amazes me. Just as important is that I am not experiencing any pain or aches even though I have increased the duration of my exercises. Even the arthritis in my left knee is better. My arm and shoulder strength is also improving, but not at the same rate as my legs and balance. What I am most excited about is that I can stand without having to grab something or brace myself against the counter.
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Registered: 09-28-2005
Posts: 654
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Education and Awareness

The KDA normally receives several email inquiries a week. Many of the inquiries are from spouses or caregivers needing additional information to help their loved one that has Kennedy's Disease (KD). Occasionally, we receive an email from a facility that is caring for a person with KD. I am most appreciative of these caregivers because they are taking the time to research KD and understand what a person is going through that has the defective gene.

This week we received such an email. A caregiver in a nursing home asked a series of questions about how KD impacts a person. We exchanged several emails. Her final email was interesting because she commented that many of the staff felt the person with KD was 'faking it' (my term) and were frustrated with the patient. After reading my responses and looking through the KDA web site, she now better understood the physical and emotional issues a person with KD goes through. Two specific areas that frustrated many of the caregivers were: (1) the almost daily comments from the patient concerning muscle pain (constant aching), and (2) the frustration the patient exhibited with not being able to perform simple tasks. The caregivers could not understand why the patient would continually try to do something that he just couldn't do. One example was walking and as a result falling.

As I mentioned, fortunately she took the time to do some research and also contacted the KDA to help her understand more about the symptoms and emotional frustrations associated with the disease. She now was taking on the task of educating the rest of the staff about KD.

This incident makes me wonder about others with KD that might be in nursing home or facility where the staff is unaware of effects of KD on the patient. It once again expressed the need to constantly educate others concerning Kennedy's Disease ... especially those in charge of your care (in a hospital, nursing home, and even your doctor's staff).
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