- Mentor Freedom Catheters: These are the best (see cautionary warning below) I have seen or used. The sheath has an adhesive that allows the catheters to stay in place without any other tape or device. This helps avoid strangulation and leaks! These catheters only come is small, medium or large. Always go larger, rather than smaller, to prevent strangulation even if it creates leakage.
- A cautionary warning. Coloplast has purchased Mentor and they are now branded Coloplast. I have had more failures than I am accustomed and some boxes were so bad I threw them away. When contacting the company they claim the catheters are exactly the same. I dispute that claim from experience! The last box purchased (July 2009) seems to have improved so I am back to a recommendation. I will say they put me though hell for a period of about 6 months and 5 or 6 boxes of JUNK! Their response to my problem was underwhelming and the financial burden was mostly shouldered by me. They did send one replacement box around March but even that box had very high failure rates.
- Smith & Nephew Skin-Prep: This product helps dry as well as protect the skin from the catheter.
- Bard Dispoz-A-Bag Leg Bag: I experimented with many different brands over time, and this one works best for me. Bard makes an “Improved” model that has an integral valve, but I don’t like it because it limits where you can direct the stream, is slower and even if you placed a tube on the end, it’s a bit messier. You choose.
- Etac Reacher #6117: This lightweight reacher has non-slip jaws and is 28″ long. These reachers can pick up really small stuff, like a paper clip or a single sheet of paper, or heaver objects like an bottle of cooking oil. They are the best that I have seen or used. The only drawback is that they are a little fragile so you should expect to replace them from time-to-time. They are available from Sammons Preston 800-323-5547 or from Amazon.com, which has a better price.
- MPS Mark II Vehicle Hand Control: Best hand controls, period! These controls are available from New Ability in Melrose Park, Illinois. I spoke with Jerry at 708-345-3939; he seemed competent and flexible. I haven’t used him yet but since my long-time installer, Steve Meyer in Elmhurst, retired, I will use New Ability for my next car, if I can’t install the controls myself.
- Invacare 9000XT Wheelchair: This comfortable chair is more than adequate for my needs inside and around my house.
- Quickie 2 Wheelchair: This is my outside chair because of it’s long lasting, rugged and flexible design.
- The Roho Group High Profile® Dual Compartment Cushion: When gel cushions stopped being effective, I could sit in a wheelchair for a very short time. The Roho cushion came to my rescue. Now I can sit as long as necessary without fear of breakdown, although some discomfort will occur from time-to-time.
- Reebok High Tops: Unfortunately, these shoes are not being made anymore. They protect my feet and prevent pressure sores from developing. They are easy to get on and off. Sometimes you can find them for sale on the Internet.
- Land and Sky Pillowtop Waterbed: Simply the best and most comfortable bed I have ever used. One of the many benefits of this waterbed is its mass. As a paraplegic you will essentially stay wherever you last put yourself on the bed. On a normal mattress or even an air mattress, heat accumulates so you will become uncomfortable. With the mass of the waterbed, it tends to manage the heat build up much better. You will be more comfortable, and it will better for your skin.
- Roomba 560 Robot Vacuum Cleaner: This great little cleaning product does have a few problems. Occasionally it gets stuck under the sofa. It does require frequent cleaning, which sometimes means minor disassembly, but on balance it works very well. Manual mode works well for little messes. I recommend the remote control because you can drive the Roomba around to the spot that needs cleaning, and when finished, tell it to go home (dock) and off it goes all by itself.However, the final verdict isn’t clear. I have two Roombas. One is already on its last legs. The transmission is shot, and constant fiddling is needed to keep it working. The other seems to be OK at this time.
- Tyless Shoelaces: These shoelaces are much easier to use than regular shoelaces. I am sure there are many other brands, but I have found these to meet my requirements.
- Ettore Rea-C-H Telescopic Extension Pole: This eight foot, two-section pole has a light bulb changing adapter. The adapter is a yellow suction cup, which works reasonably well for changing reflector (R30) style light bulbs in recessed fixtures. Some finesse is required. It’s best to assume that the suction cup isn’t gripping the bulb very well and use balance. There may be better options, but this works OK for me. I don’t see the adapter on the company’s website so this may be an obsolete product.
- Territory Ahead: Taboose Pants and Zephyr Pull-Ons are as hard-wearing as jeans, but as easy-wearing as a pair of sweats. Both have full elastic and look pretty good.
- How to Adapt: This web site is packed with useful disability focused information, A lot going way beyond the scope of my insights. Also the man that is authoring that site is more recently disabled and his perspective may be more applicable than my own somewhat obsolete views.
- My homeowner’s association (Lake Ridge Club) governing the 68-single family homes in my sub-division did not permit emergency backup generators for more than 22 years. Over the years I had made requests to install one but was told it was too hard to accomplish or whatever. Following a giant snowstorm in 2011 that dumped snow measured in feet that would have prevented me from leaving me home in case of emergency. That event drove home to me the importance of become self-sufficient in the case of power loss. Compounding this need, there is a inclined platform lift that if I was operating at the time of a power failure, it could have serious consequence. In February 2011 I requested permission to install a backup generator. The association determined that the ADA likely would compel them to allow the installation despite their restrictive declaration. They even declared that fact with the Village of Burr Ridge. The president informed me of this finding and indicated that I could have just gone ahead with the installation. Instead I choose to work with them and fully cooperated. About 6-months later they granted permission to install my generator. My generator, a WINCO PSS12 and the enclosure is a tan color – similar to the bricks in the homes in my sub-division. The enclosure is designed to be long lasting and to accommodate the harsh environment of the generator. On or about May 8, 2012 the Association’s president contacted me about changing the color of the generator – they had reserved the right when granting permission but was not mandated. Presumably they had reserved this right in the event of complaints. The president of the association has admitted to me there are no complaints. My six most immediate (excluding a home owned by a board member) owner occupied homes have voiced no concern – for good reason because the generator is barely visible even in winter. The Association’s own rules even permit the color tan for 2nd air conditioner condenser which to the casual onlooker mimics the appearance of my generator. I believe the association is acting out of bias or has some other reason to punish me and not to accomplish some reasonable goal. Here is the letter that I wrote to them if you want more of the story – just click here.
- United Healthcare, Prescription Solutions and American Medical Security are all owned by United Healthcare. The following is a very disturbing situation. I am prescribed a medicine and I have been taking for more than a year. The insurance company’s pharmacy that pays for the benefits requires a prior approval for this medicine. This drug is covered by my insurance plan, however Prescriptions Solutions has chosen to not supply it themselves. This forces me to purchase it locally and that is the first screwing of this troubling adventure. This places an additional financial hardship on me as it denies me of a lesser co-pay if purchased directly from them. More importantly this breaks the communication with them. As a result of this broken communication chain in March with no warning when I attempted to obtain a refill, Prescriptions Solutions declined the payment. When I contacted Prescriptions Solutions, I was informed the prior approval had expired despite many refills remaining on the prescription. It has taken 4 weeks, 2 letters, and more than 10 hours on the telephone with them to have the beginnings of what is looking like success – I think. I would add they have been approving payment for the medicine for well over a year at this time and during that time it has always been a problem getting the medicine due to their poorly crafted and administered cost control polices.. During these numerous calls to Prescriptions Solutions, their customer service advocates (a really hilarious name) have told me at least 4 different stories (the medicine is not covered, the insurance company won’t pay, doctor’s office provided the wrong information, etc) – In one call “Mary” (her real name) refused to define a term that I needed to be able to tell the doctor what they required. Mary also stated there was no way to follow-up with her and no other identifying (for her) information could be provided. The consistent theme on each of these contacts was someone else was to blame.
However Prescriptions Solutions computer system is still refusing to authorize payments to the pharmacy. Contacting them yet again and the first words out of the customer service advocate was to blame the Pharmacy. She further assured me she would call the Pharmacy and provide them the needed instructions to complete the transaction and would call me back with an update. No big surprise 4 hours later and no call back and no medicine.
And perhaps the final insult, this medicine requires consumable medial equipment to administer the medicine which according to American Medical Security is a covered expense. Since Prescription Solutions does not carry these supplies and AMS has been unable to provide me with ANY “in-network” companies that carry these supplies. As a result I have to purchase them separately and they treat this additional (and wrong as this should be part of the drug benefit) expense as out of network and apply the costs against my annual deductible opposed to reimbursement.
I wouldn’t be this upset over this adventure if this was the only chapter with this single medicine unfortunately its not and I fear on each refill yet another obstacle will be erected. THESE COMPANIES AND THEIR POLICIES SIMPLY SUCK – IF YOU HAVE ANY CHOICE DON’T BUY INSURANCE FROM THEM. I HAVE NO CHOICE AND DESPITE THE NEW AND GREAT 2010 HEALTHCARE BILL I WILL NOT HAVE ANY CHOICE UNTIL AT LEAST 2014. Update April 3, 2010. I now have the medicine. It required another letter (See the letter here) and more phone calls. After sending my letter I did receive phone calls from American Medical Solutions and Prescriptions Solution’s Client Relations Manager, he was very apologetic and I believe sincere. He indicated that they had indeed failed and he assured me the problem was resolved and would not be a problem again. I remain skeptical as he indicted the solution was a “special override” to the system.My concluding thought, Prescriptions Solutions is simply incompetent and they do not have my life or health as a priority. As one measure of their incompetence I reference the wrong prior approval, (See wrong prior approval here) l note it’s been marked as reviewed by MN. I conclude MN is at the very least careless because the 2 week approval is in direct conflict with the Doctor’s prescription for this medicine. My doctors office insists they never told MN this term and have told me they have that information in writing. The only conclusion I can reach is an error existed and MN chose to do nothing about it or worse was so clueless as to not notice – A Crappy Company with Crappy Systems! Also, as a result of the stress concerning this matter I am now experiencing one of my “spells” of feeling rather poor, higher than normal temperature and a very disturbed sleep. – Thanks United Healthcare I can only hope and pray that it resolves without serious consequence.
- Bubba’s Elevator Service of Joliet, Illinois: When Bubba Elevators installed a Savaria Concord Residential Incline Platform Lift, they failed to anchor it properly to the wall. The lift, while in operation, started to tear itself off the wall. In addition, they installed the wiring improperly and cut the primary electrical cable too short. The installer then attempted to cover up this mistake by simply twisting the ends together and covering them with electrical tape. Eventually this splice failed, shorting out the unit.
- Savaria Concord Elevators of Canada: The company failed to intervene when I had issues with Bubba’s Elevator Service. They refused to provide any repair service or parts for their Residential Incline Platform Lift. I found them difficult to do business with though they manufacture a good and useful product.
- Drake Hotel in Chicago, Illinois: I attended a charity dinner dance in 2006. Wheelchair access is very poor. I could not access some of the public rooms without requesting security, traversing a circuitous path and using temporary ramps. Since there were no public markings for these routes, I had no choice but to wait. Significant delays took place each time security was required to provide access to these areas. In one case, it took over twenty minutes to obtain assistance. Management, when contacted both that evening and later in writing, offered no relief and were dismissive. While the accessibility situation is understandable given the building’s history and significance, the poor service is not! Imagine the possible negative outcome for the wheelchair bound in the event of an emergency like a fire in one of those rooms. I say “no thanks.” The last straw was that more than half of the attendees at this event were afflicted with symptoms associated with the Norwalk Virus. This virus was confirmed in several attendees who were so sickened that they required hospitalization. No other common link was ever identified.
- Palos Country Club in Orland Park, Illinois: Inadequate accessible parking. The only accessible entrance, located in the rear, has been locked on two occasions.
- Fontano’s Subs in Hinsdale, Illinois: Great sandwiches, but an inaccessible entrance in spite of significant remodeling and expansions performed after ADA was passed. Personnel from the Hinsdale Building Department told me that compliance with ADA was not their problem; they advised me to contact the Department of Justice with my complaint. However, there is an entrance, which in my experience is always locked, that is accessible and would allow entry into the dinning room. Getting someone to open it is a problem as is navigating around the tables and other obstacles.
- Holland America’s Nordam Cruise Ship: Prior to booking and departure, I received assurances from Holland America that the ship was accessible and that “some” of the tours would be accessible. The reality was different. None of the tours during the three-week cruise were accessible. In addition, parts of the ship, including access to the outer deck, were close to impossible to use due to the absence of ramps or their type or style, and some doors could not be operated. Moreover, the ship was dirty and many elevators were inoperative during the entire cruise.
- Mobility Works of Villa Park, Illinois: This business adapts vehicles and installs MPS Mark II hand controls. Unfortunately, they have a policy I find unacceptable. They will not install hand controls without installing an MPD Accelerator Guard that covers the accelerator pedal. This cover, which is bolted though the floor, damages the floor and thus is unacceptable. Their salesman indicated that it was a safety consideration to prevent my feet from interfering with the accelerator. In my 31 years of driving cars equipped with hand controls, this simply has never been a concern as my feet and legs stay where I place them.The manufacturer of the hand controls does not impose such a requirement on their dealers. I found out later that other Mark II dealers don’t have this requirement either. Neither does the State of Illinois impose such a restriction. The Mobility Works salesman informed me that the cover was easily removable to facilitate an able-bodied driver to operate the car. Since the cover is easily removable, except for the permanent bolted part, I don’t see the point of requiring the cover other than for the lasting and permanent damage it caused the car. This is particularly detrimental given that I was installing these controls on my classic ’65 Chevelle.I guess Mobility Works feels the need to screw the disabled out of an extra $305 for a useless piece off equipment. I tried to work with them, spoke with the general manager and offered to sign a waiver. The general manger informed me that he was a legal expert and said the waiver would not be valid. There are other installers that are much better and less expensive.
- City of Elmhurst, Illinois: I attended their “Cool Cars under the Stars” cruise night recently. The bad part of the evening was that I was issued a $250 ticket for parking in a disabled spot. Go figure. Perhaps they thought the wheelchair, hand-controls, disabled parking permits, IV lines dangling from my arm were all some sort of an elaborate rouse. The letter I sent to the Mayor and Chief of Police explains the complete story, including some fault on my part, which should have been easily corrected. I won’t be back any time soon as I believe their police department suffers from arrogance and disinterest. The ticket was dismissed by a clerk in the city’s finance department the next day, but all in all it was an unneeded hassle.An update, I received a call from the Chief of Police, who apologized to me on the behalf of the police department, for its actions and how I was treated. I felt it was a genuine gesture. I learned from the chief that the two officers had complete control and authority to resolve this matter. Too bad I had to suffer at their hands. I also note that none of the police department’s response has been put in writing. I wonder why? I have not heard a word from the Mayor, although more than ten days (6-23-2008) have elapsed. It’s amusing to me that I was given 10 days to resolve the ticket, but the Mayor couldn’t acknowledge my letter in that same time period! I will avoid Elmhurst, Illinois to the extent I can.
- Village of Burr Ridge, Illinois. For many years the village has provided a subsidized taxi program for the disabled and seniors. To access the program, discount coupons are purchased from the village that are accepted by the taxi company. These coupons sell for 50 cents on the dollar. There was no needs test – economic or otherwise beyond being 60 years old or being disabled. Over the years the budget for this program has been increased several times. The village administrator when asking the board for a proposed increase that the program was very popular. NO KIDDING – free money is a popular program! In 2010 with the village facing financial challenges it was looking for ways to save money. The administrator suggested cutting this program’s budget and not allow the use of the coupons for travel to airports. The administrator reported the majority of coupons purchased were used to travel to the airport and that many of these users had no economic necessity. I wrote to the mayor and trustees (letter attached here) making the appeal that the administrators approach is flawed, and I raised the argument to consider implementing a needs test in lieu of destination restrictions. Imposing a destination restriction prevents travel for medical treatment or a family emergency such as a funeral. My letter had some impact on the trustees as a “needs test” was adopted, however Trustee Dave Allen vehemently argued that no use of the coupons to travel to an airport should be allowed. Unfortunately his view prevailed and the board at their January 11, 2010 meeting imposed the airport restriction. How unfortunate, if you otherwise qualify for this program, reside in Burr Ridge and have medical or other substantial needs like a funeral that requires air travel you’re screwed..
- Nationwide – Allied Insurance. I have had this company’s insurance for many years with no claim history and out of the blue they canceled one of 5 policies that I had with them. The notice was cryptic and it took some effort to find the real underlying reason not to mention which policy as the notice did not provide that basic piece of information. In response I wrote them a strong letter. While the letter did generate a flurry of contacts from them – none addressed the issues rather the calls were designed to pacify me and not fix the problems. I know have new insurance placed with a top rated company and as this is being posted on December 3, Allied still has not canceled the remaining policies despite the process being initiated with my agent in early November.