Preserve Strength, Maintain Independence

I am a Seating Specialist here at Banner Good Sam. My first question to your PT is: “is he or she a Seating Specialist or an Assistive Technology Practitioner (ATP)?” and “How long has he or she been doing seating and mobility evaluations?” If you have had a seating evaluation, did they go over the pros and cons of a scooter vs. a power chair? Did they listen to your needs and concerns? Did they educate you as to why one option is better than the other? Do you feel any pressure to choose one over the other? Are you given the opportunity to try the different options? Here in Phoenix, I work closely with the different wheelchair vendors. If requested, our wheelchair vendors will bring a scooter/power chair out to your home to make sure that it fits your needs in your home environment. Is the PT able to arrange that for you? If not, does the vendor have a showroom where you could go look at the equipment? Since these are generally expensive pieces of equipment, I prefer that my patients have a chance to try out the equipment before we submit an order. These are all things I would ask the PT if they are able to arrange this for you.

Another area that I discuss with the patient during a seating evaluation is transportation of the powered mobility. Depending upon the equipment that you decide to get, there may be a lift for the back of your vehicle, or you may need a handicapped van for transport. Since that is not my area of expertise, I give information to the patient on who to contact. There are two or three businesses in Phoenix that put lifts on vehicles, or work with the patient to find an affordable wheelchair accessible van. Does your PT know of any businesses in your area that could help with that?

Again, it takes a bit of coordination, but your PT will probably be able to help you with this. This is a bit of a “puzzle”, and you need to have all the pieces explained to you, so that you can make an informed decision. I have found in my experience that I need to really listen to my patient so I can make sure that they are making the decision that best suits their needs. If not, then the powered mobility won’t be used. One caveat, make sure you understand what your insurance (Kaiser?) will pay for, if you have a co-pay, and how much it is. This is something that our wheelchair vendors work closely with the patient on. No one wants a “surprise”.

-Diane

Keep working with you doctors on differential diagnosis. Due to your slow progression and your positive response to exercise, you should continue with it (as long as it does not negatively effect your quality of life).

First I would recommend an Occupational Therapy evaluation with either an outpatient OT or an outpatient Certified Hand Therapist (CHT). They will do assess your hand strength and help you learn what would be best for you to maintain or improve your grip strength. It may be gentle range of motion exercises, it may be a home exercise program with soft theraputty, it may be tendon glide exercises, etc. In addition, the OT should work with you on compensatory strategies to optimize function. For example, would built-up handles on utensils help you? Using a button hook for buttons, or elastic laces on your shoes? The therapist could do an Activities of Daily Living (ADL) assessment with you during which you go over your day from the time you get up until the time you go to bed to help you address any issues you have.

Physicians are the professionals that differentially diagnose. Please continue to consult with specialists in your area until you find the source of your issues.

As always, I would recommend that you see an Occupational or a Physical Therapist for a thorough evaluation. Of course, it would be best if you see a therapist that treats patients with dermatomyositis. However, gentle range of motion, rhythmic breathing, and the fluid movements associated with qigong would all be beneficial to you.

If what you have left allows you to live a life that is functional and independent than I would say that maintaining is good and you’ve found a good balance. If you feel that you have higher goals and activities you’d like to do but cannot currently, I would advise seeing a local Physical Therapist who can help you toward your goals. If you’re finding the workload to be excessive and leaves you fatigued, losing ability or in pain, then I would say that building muscle strength may not be the best approach for you, and a maintenance program will work best and may need to adapted periodically if further weakness occurs.

Vibration machines activate muscles. Your body has to counter the perturbations the machine gives you and therefore reacting to the movement is healthy. All motions have benefits. Be careful though. Vibration can also inhibit or fatigue muscles. If you find yourself fatigued you may want to decrease the frequency and/or duration of the exercise session.

There’s no ideal type of exercise. The ideal program should be client specific to meet the needs of that client. A Physical Therapist working with a person with Myositis should identify weak muscles and stronger compensatory muscles. He or she should find exercises that work all muscle groups without excessive fatigue that leads to diminished functional mobility or increases fall risk due to post exercise fatigue and further balance impairment. The therapist should focus on range of motion and protection of weaker muscle groups and may decide to use resistive, anti-gravity exercise to strengthen muscle groups not affected by the disease and can help improve function….and therefore quality of life.

Hi Fay. Great news on disease remission. You most likely have hip and low back weakness, or you could have distal weakness and your hips are overworking. Either way, a detailed evaluation by a local Physical Therapist that works with Neurological Disorders would be your best bet on figuring out how to best help you. Remember, each person diagnosed with Myositis has different distribution of strength and weaknesses. Therefore, I strongly recommend that you see a movement specialist (like a Physical Therapist) who can help you find the ideal program for you and address your specific issues.

Remember, each person diagnosed with Myositis has different distribution of strength and weaknesses. Therefore, I strongly recommend that you see a movement specialist (like a Physical Therapist) who can help you find the ideal program for you and address your specific issues. Think about keeping a log of your activity and exercise with a fatigue/effort rating like the BORG SCALE. Try to make connections between exercise completed and how it related to function for you. Exercises that lead to improved function should be duplicated 2-3 times a week, and those which lead to exhaustion and dysfunction…you may want to adapt. How to adapt you ask? Find a local therapist who specializes in chronic degenerative neurological conditions. They’ll know how to help you. They’ll just need to make sure not to exercise you during a “flare-up”.

Discuss matter with your doctor. Generally, you don’t want to exercise during inflammatory phases. Regular, everyday activity should be sufficient. In you case though, it sounds like walking is beneficial, and you should keep it up as long as it’s done safely (using recommended equipment). Find a local therapist who specializes in chronic degenerative neurological conditions. They’ll know how to help you. They’ll just need to make sure not to exercise you during a “flare-up”.

Have you tried aquatic shallow water physical therapy followed by a community based shallow water program? It is less exhausting and you can duplicate functional activities in the water that you cannot on land. If you body feels like it has weights tied to it, gravity reduced activity/exercise should work well for you.

Yes, you don’t want to exercise during times when muscles are having an inflammatory phase. I would caution against high intensity exercise because it may lead to “overuse syndrome”. You may feel OK during the exercise but could have delayed onset weakness/fatigue that may impact your quality of life.

Have you tried aquatic shallow water physical therapy followed by a community based shallow water program? It is less exhausting and you can duplicate functional activities in the water that you cannot on land. The aquatic environment may also allow you to exercise with higher intensity which would give you pleasure I think since you were so athletic in the recent past. You may also want to consider researching MET (Metabolic Equivalent Unit Charts) that show a relationship between functional activities and caloric use for that activity. You may realize that you spreading the workload over a longer period doing things you enjoy may lead to higher caloric expenditures than an hour at the gym. At the same time, you’re allowing time to recover between activities while maintaining a high quality of life doing things you enjoy.

Please ask your Physician this question as well. It’s not uncommon to have stiffness and some discomfort with DM. Gatroc/calf stiffness with standing and walking is more indicative of stretching and most likely not braking down of muscle. Especially with normal activity like walking.

Good news is that you have a positive response to exercise like hiking and biking. Exercise itself does not cause disease progression, but exercising during periods of CPK elevation and during muscle inflammatory periods may not be ideal. At that time, muscle is already under stress, so additional stress may not be ideal. You should consult with your physician and follow their guidance on this topic.

I would recommend that you discuss this matter with your physician and see if there are other factors possibly playing into your fatigue. If not, remember….there are many ways to exercise. It does not have to be intensive or lead to muscle building. Oftentimes, relaxing, stretching types of exercise like Yoga, or breathing/relaxation exercises may have more functional benefit than you might think.

Your exercise routine may be just fine and may actually be helping you maintain a high quality of life. You may want to see a local Physical Therapist that treats chronic, degenerative conditions and can find the source of flexibility changes. It may be due to your weakness and it would be nice to know what your options are. I wouldn’t change your routine until you have a specific evaluation, and have a question and answer question about how to improve function, and increase efficiency/maximize ability based on your current status.

Cynthia, In answer to your second question. We also have an ALS Clinic in our Neuroscience Clinics. John and I are the primary PT and OT for that Clinic also. As far as reimbursement for “alternative therapies”, we have not had very much success with that. However, that being said, it really does depend on your insurance. I would call your insurance company and ask if they could assign you a case manager. That would be one “go to” person that you could contact when you have questions about what your insurance will cover. It is easier to have an insurance case manager rather than telling your medical history over and over to different people every time you call. In addition, you may get different answers from different insurance people which will be confusing. Anyway, ask for a case manager, and then see what your insurance will cover. Perhaps if the massage helps with pain control, your physician would send a letter helping you medically justifying your need for massage therapy. I would suggest always appealing an insurance denial. Although they don’t always reverse their decision, sometimes persistence pays off.

You might also check and see if there is a local massage school that would be willing to do massages for a reduced fee. However, since you have a chronic illness, you would want to be very careful following that avenue since you many not want to have an inexperienced massage therapist working on you. Just a thought, though.

Working and running errands for 5-6 hours a day is exercise in itself. Fatigue is most likely an issue for you. There are many forms of Yoga, but finding a form that focuses on breathing, relaxation and gentle stretching may be of benefit for you. As I said, you’re most likely getting enough exercise with your daily life. May also want to consider 1-2 x week aquatic shallow water aquatic exercise with someone interested in teaching you active assistive motion and not necessarily resistive movements.

You should discuss the matter with your doctor, possibly see a registered dietitian and maybe even a local Physical Therapist that treats chronic, degenerative conditions and can help you find an effective program.

I apologize, but I cannot answer questions related to you medical diagnosis. You’ll need to discuss the probable contributing factors that led to your diagnosis with your physician.

I don’t believe that exercise causes permanent muscle damage, BUT exercising during inflammatory phases of your DM may cause a decline in your functional mobility due to fatigue, pain and additional weakness. Excessive resistive exercise aimed at “gaining strength” during periods of inflammation of disease flare up may have adverse effects. I would recommend that you discuss this matter with your physician.

Some research also shows that exercise can be beneficial. The question is “How” strenuous should the exercise be? No one has a recipe for this, because “overdoing it” is highly individualistic. You do have a point though. Excessive resistive exercise aimed at “gaining strength” can lead to excessive fatigue, which in turn could leave your immune system vulnerable. But, If an exercise balance is achieved where someone can exercise regularly without a drop in function and fatigue then exercise can be beneficial in my opinion. More research is needed to validate exercise benefits and how to find that perfect balance.

I have not seen any patients that have had tendon realignment surgery to improve hand function, so I cannot address that question. As far as supplements, injections, or IVIG treatments, I would talk to my neurologist about that. If your neurologist has experience with tendon realignment surgery, I would also run that by him or her for their opinion. Sorry that I could not be of more help with this…..

Due to your recent diagnosis I would advise you to investigate further the source of your significant loss of energy. If strength is not a huge issue, other factors may be at play. If strength and weakness are the source of your diminished energy, then having a specialized PT and OT eval to look at energy conservation strategies and possibly mobility aids that save energy may be of benefit to you. Please discuss this matter with your doctor.

I would continue with active, assisted active, and passive exercising and stretching of your fingers to keep flexibility. You might want to go to a Certified Hand Therapist (CHT) to be evaluated and get help with specific exercises you can do at home. Also, you may need bracing to keep fingers/wrists positioned correctly. Usually splints or braces are worn at night (and I prefer having only one splint on at night if bilateral splints are recommended. That way a person has one hand “free” at night). Positioning using a splint at night gives 8 hours of good positioning/day. However, this is something you would want to discuss with the CHT – it may not even be necessary.

John and I are fortunate in that we work closely with Dr. Todd Levine and Dr. David Saperstein, who are experts in the evaluation and treatment of myositis. If therapists have access to physicians like these, that is probably one of the best ways to learn about the disease. Otherwise, utilizing The Myositis Association as a resource is another excellent way to learn about myositis. In addition, a PT or OT who is interested in myositis can contact other treating therapists; go online to websites such as www.nlm.nih.gov ; www.mda.org; www.ninds.nih.gov ; etc. Go to their local medical library. Follow chat rooms or blogs written by people with myositis. Go to conferences. Go to continuing education courses. There are many ways to learn about myositis if one has the interest and does their “homework”.

I am a seating specialist here at Good Sam. It is difficult to recommend a specific wheelchair model since every person is unique and has his or her own requirements for mobility. I would recommend that anyone thinking about a wheelchair see a therapist (OT or PT) who is a seating specialist. You may be able to find one in your area on the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) website at www.resna.org. I recommend that because generally, a therapist is not trying to “sell” a wheelchair and tries to ensure that the patient gets the proper equipment. RESNA holds their members to high ethical standards, and I am sure that some of you have heard about all the fraud and abuse with respect to scooters recently. The OT or PT who does your seating evaluation has to medically justify every piece of equipment on the wheelchair. If they can do that, then there usually isn’t a problem from the insurance company getting what you need. I always emphasize safety, independence, and function with respect to mobility for my patients.

That being said, there are three categories of wheelchairs. Manual wheelchairs, POVs (power operated vehicles or scooters), and power wheelchairs. I would suspect that most people with myositis would be looking at powered mobility. Scooters have pros and cons. Power wheelchairs are divided up by wheel placement: front wheel drive, mid or center wheel drive, and rear wheel drive. They all have different features that should be discussed with the patient. Again, a seating specialist would go over the equipment pros and cons so that you can make an informed decision.

-Diane

Please discuss with your doctor.

Hi Noemi, Thank you for your questions. I would continue the Yoga. With an experienced aquatic physical or occupational therapist you can do anything in the water. They can support, splint, position, float extremities to provide balance, comfort and optimize ability to participate in functional exercise in the water. In addition, specific ROM, strength, balance and mobility can be accomplished to tolerance as well. Make sure you use a self assessment fatigue/exertion scale like the BORG Scale in order to be aware of effort and know when breaks are needed or when fatigue is creeping up on you. Exercise when done correctly should make you feel better.

We look at every aspect of your life in order to save energy while still keeping things moving effectively. The goal is always empowerment and achieving meaning and high quality of life. That may mean giving up certain things, and replacing them with other things…or using effective tools that help accomplish activities more efficiently/effectively.

If you don’t have power mobility, you most likely should look into it. Kids are very accepting of alternative mobility when engaging with them.

There are many tools and aids out there that can help with activities of daily living and mobility. Life can still be very meaningful. Oftentimes we hear “why did we wait so long before using some of the available tools out there”.

You most likely have a combination of trunk flexion, hip and knee muscle weakness combined with a balance impairment. You most likely avoid stairs because they are difficult and dangerous. One uses different muscles for walking and different ones for stairs.

You may have an excellent point. There need to be more educational opportunities in the Physical Therapy and Occupational Therapy professions when it comes to Neurological, chronic, degenerative disorders. Associations like the Myositis Association can help with that. Therapists can learn how to write better goals based on their evaluation findings and still achieve functional outcomes. The need and genuine desire to “fix” people needs to be balanced with helping people achieve modest goals and reaching an acceptable compromise. If the client is educated in findings, options and involved in the plan of care, outcomes can be satisfactory for everyone…even with chronic degenerative conditions.

If “managing” versus “fixing” becomes the norm, I do feel PT’s and OT’s have the skill and the education to do an excellent job, but people need to be taught how to effectively “manage” and “treat” a chronic condition with the goals being safety for both clients and caregivers/loved ones; balance, mobility in the most efficient manners even if tools are needed; people would not only need to learn about their tool options but would also need to learn how to use them; fall recovery techniques; caregiver training; exercise education as part of a home program that again leads to effective completion of exercise and improved function and ability without energy depletion; equipment recommendations that have respect for appearance/cosmesis that excites potential users and gets them involved in the plan of care rather than receiving equipment the therapists find are important and end up in a closet or storage. Yes, there’s lots of room for growth, but I believe creating Physician/Therapist connections locally where therapists work closely with the referring MD’s and learn more on how to best manage these conditions. Because client needs vary so much, Physicians and Therapists both learn more when they work together.

Gentle range of motion and stretching daily is a good idea. Tearing will not happen, unless you’re generating tremendous forces that act upon your tendons. For example, jumping down from a higher surface, falling, etc. If you’re concerned about how to safely stretch, please seek professional assistance.

Hi Bonnie, I cannot give you specifics without evaluating you first. Please ask your doctor for advice first and if needed seek a therapy evaluation to get your answer.

If exercise does not cause excessive fatigue or loss in function then it’s most likely OK.

There are benefits to exercise but it must be done correctly for you without overworking muscles. If PT made you worse, then you most likely overworked. Make sure both your Neurologist and Rheumatologist are aware of your response to PT. See if they would be OK with aquatic gentle exercise or Aquatic Physical Therapy which is more sensitive to energy conservation but still works on stretching, range of motion and gentle strengthening to your tolerance. Exercise should be adapted if it leads to excessive fatigue and therapist should know exercise response if they are to adapt a program to your specific needs. If your doctors say no to therapy, follow their advice.

If exercise is not making you function worse the same day or the day after then you’re most likely exercising correctly. Movement oriented exercise should be just fine…exercise aimed at “re-gaining” lost strength should not be the approach to exercise.

We work closely with our clients to identify/define what “quality of life” means to them. Then we outline goals that engages our clients and includes them in the plan of care. Little by little we work toward modifying lifestyles, improving safety, maximizing functional mobility even if it means using tools; improving energy conservation strategies, looking into universal design/accessible living environments and many other things that allow our clients to feel like they have Power Over their disease process.

Our doctors work closely with us to make sure all client goals are met (even ones that do not include pharma options).

Passive and Active Assistive exercise is still exercise. Yes, try it and see if it helps.

TENS = pain relief MES = muscle stimulation and activation. May also act as biofeedback for muscle recruitment. May lead to overuse for some people. Can only be hooked up to isolate specific muscles and therefore not that functional. Works on the “building lost muscle” mentality. Not sure if this is the ideal way to exercise.

I can’t give specific advice unless I evaluate.

As an OT, I always look for a way to pair my treatment with a functional outcome. Therefore, I may work on strengthening/range of motion so that the patient can perform a functional task. The outcomes have to be objective and measureable.

If one of my patient’s goals is to be able to maintain or improve hand grip I want to know what they are having problems with. For example, the patient is having problems buttoning buttons on their shirts or sweaters due to impaired hand grip and decreased manual dexterity, and needs someone to help them dress everyday. Then, I might use theraputty, passive and active range of motion, adapted equipment, etc. to work on the strength and manual dexterity needed to button a sweater. This will allow the patient to increase independence with dressing, which is an activity of daily living.

If my initial assessment shows that the patient can only button one button on a sweater, then a short term goal might be: In 2 weeks, the patient will be able to button 4 of 8 medium size buttons on a sweater with a button hook and moderate assistance. A longer term goal could be: In 4 weeks the patient will be able to button 8 medium size buttons on a sweater with a button hook only and no caregiver assistance. This is an example of one goal of many that could be worked on during therapy. This would allow your therapist to work with you on functional goals rather than considering it just “maintenance”.

-Diane

I am familiar with the Tek Robotic Mobilization Device. I have not personally recommended one for a patient, but I think it is an example of equipment headed in the right direction. I like the idea of people being able to stand in a powered device. We are used to standing – not sitting all the time. It is better for bone health to be standing as well as sitting. In addition, there is the psychological aspect of always having to look up to people from a sitting position. I think the Tek is rather limited due to the low clearance; one would have to make sure that they were going only over smooth surfaces. I’m not sure how it would perform on a surface such as a carpet or sidewalk. In addition, I’m not sure how much core strength one needs to be able to control the device. People may remember the Ibot, it was standing /stairclimbing wheelchair, but you needed pretty good core muscles to control it. And lastly, it may be difficult to get insurance to pay for the Tek. Again, it is going in the right direction and I hope that this type of innovation continues.

Yes. Again, see NMES answer. If used in the right muscle group and tied into the appropriate functional activity it can help correct ineffective movement strategies or lead to other positive outcomes. If used incorrectly, it can overwork muscle groups and negatively effect functional mobility.

Yes! AFO’s work well for awhile, but due to proximal weakness, a KAFO is not as effective. An exoskeleton system is a better option. People are generally scared of high tech, but I think this is the direction the future is heading. The systems you mentioned including the exoskeleton technology is welcomed by some but not all due to their robotic nature…If given a choice, I think people prefer devices that allow them to stand versus sit.

Great question. There are conflicting opinions clinically and in research. In IBM the inclusion bodies cause the muscle damage which therefore creates the immune response. I personally know that no one goes on bedrest when their CPK values are high. Therefore, functional activity is much more intense than passive, active assistive or even active range of motion. I feel that appropriate range of motion during these times can only help the immune response, BUT if gravity assisted or passive range of motion leads to excessive fatigue which compromises basic function, then I hold off on exercise all-together. I feel that the combination of gentle range of motion combined with the effort to function and accomplish basic needs, may be too much for some people and therefore, function always wins. People must still eat, bathe, use the bathroom etc. That can be their exercise if that’s all they can tolerate.

Hello Gilbert, Thank you for your question. Unfortunately, I’m a Physical Therapist who works in an adult hospital. You may want to ask you doctor the same question and they can check on the study’s progress to date.

I think you’ve found the best way when doing it on your own. If help is available, you may want to invest in a longboard/slideboard that can be slid under you so that you may be lifted into a safe place. Calling 9-1-1 and having the fire department come and help is another option They’re good at it and can assess you in case of an injury. May want to consider an emergency alert system to complete your fall risk prevention checklist.

Yes, I would say it’s time to update your home exercises.  If knee weakness is the cause of your locking, bracing may be of assistance to protect your knees and allow you to walk safer. Please consult with your doctor for opinion on the matter.

I’m not available as a consultant for I work full time in a Neuroscience Clinic for a large non-for-profit (Banner Health). I cannot share my ideas beyond discussions like this, for PT’s must do their respective evaluations and write goals that reflect their findings, lead to desirable outcomes. Learning how to write goals that lead to outcomes for the more chronic degenerative conditions takes working with the clients frequently, to the point that you as a therapist can truly empathize with them and their challenges as they engage in everyday meaningful activities. In addition, working closely with a specialist Physician is a huge asset. We all learn from our clients and can better serve them when we work together for their well-being. I’ve been privileged to work with a great team of Physicians that have taught me a great deal about these degenerative conditions. Their excitement and intervention has led to excitement within our comprehensive team and we truly do our best to find the smallest detail that will lead to a desirable outcome and provide hope for the person that lives with the condition on a daily basis.

If you have difficulty getting up out of a chair, you must be more aware of the type/style of chair that you sit down in. Big, overstuffed recliners can be especially difficult to get out of. The same goes for many of the couches on the market that have seat cushions that are deep (the distance from back of the knee to the back of the buttocks) and “squishy”. You also don’t want a chair or couch that is too low.

If possible, use a chair that is fairly firm so you don’t sink down into the chair. In addition, the chair should have arms, so you have something to help you push up and out of the chair with. A higher chair is also easier to get out of. Some people use bar stools or “perching stools” rather than a regular chair. The pub style dining room tables with the higher chairs are helpful for people who have difficulty getting up from chairs.

If you have a favorite chair or couch that is too low, you can buy furniture risers in different heights that will raise your chair and make it easier to get out of. These can be bought at medical supply stores, online medical supply stores, or a store such as Bed, Bath, and Beyond.

An electric lift recliner chair is also an option. These chairs are motorized and raise you up so that you are in a semi-standing position. These should be tried out to make sure they work for you before you buy one.

There are several options to help getting up from a toilet. First, I would consider raising the toilet. One option is a raised toilet seat with arms that can be attached to your toilet. Another option is a “toilevator toilet elevator”. It is a 4 inch high piece of resin that will goes under your existing toilet and raises the whole toilet up. If you don’t want to do either of these options, then you could replace your existing toilet with a “high boy” or “American Disabilities Act or ADA” toilet. Regular toilets have a seat to floor height of 14 to 16 inches. An ADA toilet must be between 17 and 19 inches high.

Then I would consider putting grab bars next to the toilet to have something to push or pull up on. Or, a toilet safety frame is another option as opposed to grab bars. It is a frame that attaches to the back of the toilet and allows you to have something to push down on. There are many different styles of safety frames. Some people use a bedside commode (take the bucket out) and place it over the toilet. These are height adjustable, have arms, and can be easily taken off the toilet if for some reason you don’t want to have equipment on the toilet all the time.

There are more expensive options, such as a hydraulic toilet seat that lifts you up off the toilet. One such seat is called an “Uplift Commode Assist”, another is the “Tush Push Toilet Seat Lift”. If possible, go to a medical supply showroom to try these out. Sometimes they push you too far forward rather than up.

A third option is really a frame called the “Power Toilet Aid (PTA)” that fits over your toilet and lifts you straight up 13 inches. I have heard from 2-3 people who thought this was most helpful. However, it is pretty expensive (Approximately $1500), but it may be worth it for independence and safety.

This is a good question. You can’t really carry a raised toilet seat with arms around when you are traveling. There is a foam toilet seat called “Comfort Rise” (website: www.180psi.com) that is a little more “portable” and one can be stacked on top of another to increase the height, but still leaves much to be desired. Plus, it doesn’t add much height, but may be enough to help getting up. I haven’t purchased one, so I can’t vouch for safety. There is also a “Softie Toilet Cushion” that adds 4 inches of height, but again, I can’t vouch for safety. If you are flying, my understanding is that you can put a raised toilet seat in a suitcase and mark it as “Medical Equipment”, the airlines can’t charge you a fee for it. I would check on this with the airlines as their policies may have changed. There isn’t anything really great out there that I have found. Perhaps someone on this forum has knowledge of other products or ideas that they could share.

It provides gentle exercise from a position that is more supportive (recumbent); Be sure to keep it at tolerable levels that you can easily do, versus resistance levels that you can only push for a few seconds.

Ones that do not cause pain and work the most muscle groups from functional postures. Co-contraction activities that recruit back, abdominals and rotators and work from cervical to lumbar. Best accomplished in the aquatic environment but can also be done in land in the form of multi-level rows. May need to be done in sitting for safety.

I highly recommend finding a local Physical Therapist that treats chronic, degenerative conditions and can help you find an effective program that is specific to your needs following a PT evaluation. The intensity, frequency and the type of core exercise must be specific to your needs. If you want trunk exercises because you’re finding weakness in the area, you need to consult with both your Physician and PT to find the source of the weakness and what the best course of action is. “Strengthen to regain lost muscle or ability” may not be the best idea.

Please ask your Physician the same question. They normally have a reason for ordering therapies or not ordering therapies. Specific data drive their decisions, but please ask them to see how they reach their conclusions and why?

A Physiatrist is an important physician and they’re usually on the case when a person is admitted to acute rehab. In our team we have board certified Neurologists that specialize in the diagnoses we see, but if the services of the Physiatrist are needed, we refer out to that person.

Not with strengthening muscles that have been targeted by Myositis. Bracing may help vulnerable joints or areas that may require support while you’re working on other body parts. This will prevent injury to the involved areas.

If you improved you must have more of an inflammatory Myositis. The best balance exercise is the one that works. Please consult with your physician and see if they’d like to get you into a balance program. They’ll also be able to identify if it’s a weakness issue, a balance issue or a vestibular issue.

First you should consult with your neurologist, or any other physician that is treating you for myositis to see if they know any therapists that specialize in myositis or neuromuscular diseases. I would contact The Myositis Association to see if they have any physician or therapists listed in your area. I would also contact your local hospital’s Physical and Occupational Therapy Department to ask if anyone there is a specialist in treating people with myositis of neuromuscular diseases (or even if any of the therapists have an interest in treating a person with myositis). If you go to any conferences or are on any web chats, you could talk to others to see if they know any therapists in your area. You might also check the National and local therapy associations. In the United States that is: AOTA (for Occupational Therapists) and APTA (for Physical Therapists). In Arizona it is ArizOTA (for Occupational Therapists) and APTAZ (for Physical Therapists).

Hi Charlie. Happy to hear that you’re having guided exercise. You are exercising correctly if the program does not negatively effect your function or fatigue levels. If it helps you live a meaningful, full life safely, then you’re doing well. I would caution against finding the maximal weight for maximal benefit. That mentality tends to lead to overworking.

I would caution against finding the maximal weight for maximal benefit. That mentality tends to lead to overworking. Yes, you can do weights, but how much and which exercises is a challenging formula to figure out and may take a few weeks to find that balance when working with a local Physical Therapist that treats chronic, degenerative conditions and can help you find an effective program that is specific to your needs.

I don’t like to post handouts that are not specific to someones needs. I like to prescribe exercise based on PT evaluation findings.

Generally any exercise that makes you feel better, does not exhaust you, and helps you function better should be OK, but I think targeted exercise catered to your needs is best. Therefore, finding a local Physical Therapist that treats chronic, degenerative conditions and can help you find an effective program that is specific to your needs. This is the best advice I can give in a forum like this.

I don’t like to post handouts that are not specific to someones needs. I like to prescribe exercise based on PT evaluation findings.

Generally any exercise that makes you feel better, does not exhaust you, and helps you function better should be OK, but I think targeted exercise catered to your needs is best. Therefore, finding a local Physical Therapist that treats chronic, degenerative conditions and can help you find an effective program that is specific to your needs. This is the best advice I can give in a forum like this.

Being in the United States, I’m not very familiar with treating therapists in Canada. If I were looking for a physiotherapist, I would start by asking my physicians if they know of any therapists in your area that specialize in polymyositis. I would check with my local hospital’s therapy department. In addition, I would contact the Canadian Physiotherapy Association at www.physiotherapy.ca/ to speak with someone regarding therapists in your area that may have experience. If there is a support group in your area, I would ask others in the support group, or on web chats for information.

Normally it’s best to adapt your environment (raise surface or find a better surface that helps you get up). If it’s a technique issue, that is best figured out under the trained eye of a movement functional therapist like a Physical Therapist. If weakness is the issue, stand aids may be necessary.

This should be addressed by a Speech and Language Pathologist (SLP). Your physician should refer you for an evaluation.

Consult your Physician and Dietician for diet/nutrition questions. One should try to optimize function in muscles not affected by IBM and think more range of motion or gentle exercise that is not exhausting for muscles groups affected by IBM.

Generally any exercise that makes you feel better, does not exhaust you, and helps you function better should be OK, but I think targeted exercise catered to your needs is best. Therefore, finding a local Physical Therapist that treats chronic, degenerative conditions and can help you find an effective program that is specific to your needs. This is the best advice I can give in a forum like this.

Please, Consult your Physician and Dietician for diet/nutrition questions.

Again a great question for your doctor.

If you don’t feel safe, I would be willing to say you’re running out of ways to compensate on your own. Please consult with your doctor and seek a consult with a therapist in your area that treats chronic, degenerative conditions and specializes in things like power mobility (not only for mobility, but for independence with sitting to standing, bed mobility and positioning; safety in home to include bathroom and shower. We highly encourage seeking advice about adapting your environment so it allows independent functional mobility that is safe. Best to start the process earlier rather than later.

John and I believe that you are never too old to improve your quality of life. First, make sure that you have a good medical team following your care. Make sure that your physicians and the rest of the team is meeting your needs, answering your questions, and helping you find ways to optimize your abilities and function. Make sure you have good emotional and social support systems in place. Then decide what “quality of life” means to you. You may not be able to do things the way you used to always do things….you may not be able to even do the things that you used to do. BUT what CAN you do? What is meaningful to you? What gives you pleasure and purpose in life? Despite all the things that you can’t control, what CAN you control? Can you find something that gives you pleasure every day?

Polymyositis has pharma treatment options for the symptoms and IBM does not have a curative option. From an exercise perspective they are generally treated similarly and all dependent on specific evaluation findings followed by a program that is specific to your needs and aimed at optimizing function and not trying to regain lost strength in involved muscles.

From an exercise perspective they are generally treated similarly and all dependent on specific evaluation findings followed by a program that is specific to your needs and aimed at optimizing function and not trying to regain lost strength in involved muscles.

By wheelchair seating, I mean a wheelchair evaluation. In our facility, we refer to a wheelchair evaluation as a “seating evaluation” or a “seating and positioning evaluation”. Sometimes we see people that referred by Voc Rehab that need to have comfortable seating in an office chair, etc. So therefore we refer to all of our evaluations of this type as “seating evaluations” rather than “wheelchair evaluations”. It can cover a broader category.

I often go to Active Forever website if I am looking for adapted equipment. Their website is: www.activeforever.com. Another good website is www.pattersonmedical.com. I often just browse these types of websites to see what kind of equipment is available. If you live in a community that has a medical supply showroom, you could visit that also. We are fortunate here in Phoenix that Active Forever has two showrooms.

Exercise has not been proven to slow down progression of IBM to my knowledge, BUT it has been shown to improve functional ability and mobility while living with IBM and therefore improve quality of life.

Hi Karen and Lexie!!! So good to hear from you. We hope you are doing well. It was great to work with you here in Phoenix. We both look forward to seeing you both again in a few months.

Without being able to see your fingers and assess you, I don’t want to make a guess on this….do you have a Certified Hand Therapist (CHT) in your area that you could see?

Keep exercising in the pool. It sounds like it’s working for you. Any change in fatigue, functional mobility and ability that creates a balance impairment and compromises safety may mean that you’re overdoing it a bit. BUT, your awareness of body in space in the water is also different from land. If you find that your backwards fall tendency improves several minutes after being out of the water then you’re probably OK with your current exercise. You should however use a walker or walking aid that helps prevent the backwards fall tendency.

Again be careful with more. If it negatively effects functional ability, mobility, balance, walking, safety and increases fatigue then you risk overdoing it.

As far as dietary questions, I will defer that to a dietician. You should ask your neurologist to refer you to a dietician for a consultation.

If your current activity level allows full (or mostly full recovery) by the next day, then you’re OK. If not, you might need to decrease activity the next day to allow full recovery to occur.

Yes, stretching during the day is important when you are working in front of a computer. It is too easy to get involved in your work and not take a stretch break. I would go as far as setting a timer that would let me know it is time to get up and stretch, take a quick break, do some deep breathing, etc. Ergonomics are also very important. If possible, I would have your workplace arrange to have an ergonomic assessment done for you. If there is no one in your area that does that, there is a lot of information on the internet about ergonomics in the workplace that you could read and bring to your employer.

I would check with my physician before I went ahead with this. He or she should be able to advise you. In fact, the massage therapist may want clearance from your physician before they do a deep tissue lymphatic massage.

If you have questions about what your doctor is recommending, I would get a second opinion from another physician. This is out of our therapy scope of practice.

Myositis is complicated and highly individualized. I’m a proponent for longer duration and lesser frequency while complementing my care with an effective home program that can be “tweaked” as needed to achieve desirable outcomes. A PT normally needs time to asess response to exercise and adapt accordingly. If the frequency and duration are narrow, it’s difficult to reach ideal program benefits. The goal is an independent lifestyle (even if tools are needed to assure safe function, with minimal fatigue and effort so one can enjoy a desirable quality of life. Futhermore, the patient should have many exercise options so that they can make informed choices depending on how each day feels.

There is a device called a “seat lift assist” or “uplift seat assist”. This sits on top of the chair cushion so it adds height, it then gives you a gentle lift when you stand. Often, this is enough to be able to get up out of the chair. If possible, try one out either with a therapist or in a medical supply showroom.

Shallow water (approx. mid abdomen depth) is a good working depth for aquatic exercise. Deep water is more fatiguing and dangerous. For exercise specifics you must work 1:1 with an aquatic physical therapist.

I would check with your neurologist on how clinical trials are going. Or perhaps the NIH website has information.

I am not aware that Medicare covers bathroom equipment. But a bedside commode that fits over a toilet is can also work for getting on and off the toilet safely.

Occupational or physical therapists often do ergonomic evaluations. You might check the RESNA website: www.resna.org to see if any of their professionals in your area do ergonomic evaluations. Your state’s Depart of Voc Rehab might also be able to help you.