Caregiver Perspective: Helpful Resources for Supplies, Equipment, or Information
With Relapsing Remitting MS (RRMS), Lynn would have an exacerbation that could last days or weeks, but he would return to “normal” at some point and nothing much changed. With Secondary Progressive MS (SPMS), he stopped getting better. He happened to be in a clinical trial at the time he transitioned to SPMS so he was seeing his doctor every three months and getting the full court press evaluation. We started noticing that his scores were getting worse over time without any evidence of having had an exacerbation. He was not walking as far and his strength was less. Response times to questions got worse and overall he seemed to feel worse most of the time. That’s when his doctor decided his MS had changed from RRMS to SPMS and we realized we needed to look into making changes in our lives.
Referrals to helpful resources
We were not fortunate enough to have a comprehensive approach by his doctor to managing his MS. His doctor is a neurologist and he does not offer guidance on his care or alternate treatment measures; just on disease treatment. However, when I would bring something up, he would make referrals to other resources. His physical medicine/rehabilitation doctor has probably been the most helpful. He arranged for Lynn to be measured for a power chair and he’s talked to him more about dealing with his other losses and some measures worth considering in either preventing further decline or improving overall health.
I never realized there were so many mobility assistance options or that it was important to have someone who knew what they were doing to measure a person for the proper size wheelchair and accessories. His mobility assistance devices progressed from a walking cane (did you know you are supposed to put the cane on the strong side to use rather than the weakened side so that balance is better?) to a rollator (he refused a wheelchair for a long time so I used his rollator as a wheelchair instead) and from a rollator to a power wheelchair. For the power wheelchair we contacted a local physical therapy group who ran a wheelchair clinic. At the clinic, measurements were taken to make sure that back support, leg and arm supports, thigh support, and head supports were all the correct length and offered the quality necessary for his normal activities. Once we received the wheelchair, I turned to the durable medical equipment company that brought us the chair as my resource for accessories and repairs needed on the chair.
Skin care is so very important. Not being able to move voluntarily, it’s very easy for an area to break down due to the decreased blood supply caused by compressing blood vessels by body weight and gravity. Repairing broken skin is also very difficult for the same reason. Having a nursing background has really helped with this but I’ve also consulted with other nurses to ask, “What is the latest in skin care and damaged skin treatment?” For the most part, using a barrier gel or ointment works pretty well. Some people use Vaseline which is good for keeping moisture off the skin but doesn’t have the vitamins or other ingredients that support skin regeneration if the skin has started to break down. Right now I’m using an ointment that has calamine in it and covering it with a non-stick bandage that I tape sparingly to the skin with skin-sensitive tape. I’ve also used Mepilex which is an excellent preventative bandage for skin break down but it is also pretty expensive. I order mine from Amazon (I get almost everything from Amazon because they deliver to my front door and I can’t get out to go shopping.) A doctor’s order is not required.
Urinary catheter supplies
I have to intermittently catheterize Lynn throughout the day except for days when I go into work and then I put in an indwelling catheter so I keep supplies of both around. Initially, we had home health seeing Lynn when he came out of the hospital several years ago and upon discharge was no longer able to voluntarily empty his bladder. They gave me the name and contact information for a supply company and I order my supplies directly from them but I’ve also ordered through our pharmacy; it’s just more convenient for the supplies to come directly to my house. I order sterile gloves (They are not required for home catheterizations but I like to reduce the risk of possible introduction of a bacteria into this urinary tract.), a size 12 French self catheter (I use a small size that takes longer to drain his bladder but is less traumatic to his urethra) and I cleanse the area with chlorhexidine (Hibiclens) which is less irritating than betadine ointment. When I put in an indwelling catheter, I order a kit that has all I need for insertion including a catheter bag but still order a separate catheter so I can get a small gauge one. I also use a Statlock Foley catheter holder to keep the catheter from moving around with motion. Movement irritates the insertion area which increases the likelihood of an infection developing.
Finding what you need
I’ve used lots of things in providing for Lynn’s care over the years; some I find out about through word of mouth but much of what I find, I come across when searching the web. I search on words like, “handicap accessible” or “disability accessible.” I’ve found lots of adapted clothing such as pants that have no bottom but cross over in back; ponchos that cover both him and the chair when going outside, clothes that Velcro shut in back, etc.
Other good sources for information are Disability Navigator, Family Caregiver Alliance, and the National Alliance for Caregiving. There is also information on the National Multiple Sclerosis Society website under Resources and Support.
And there’s me. Please feel free if you have a question to send me a comment or reply. I may not know the answer but I’ll certainly try to find you one.
How many specialists did you see before finding "The One"?