Beejet's home site

My Schedule

• 6:30 - Get Up, Ride Passive Bike for half hour
• 7:30 Eat Breakfast, all meals fed to me by Elizabeth
• 9:00 - Elizabeth brushes my teeth now and after dinner brushes and flosses teeth
• 9:15 - On Computer
• 10:00 - Rest reclined in chair
• 11:00 - Lunch Cottage Cheese and Grapefruit
• 11:30 - Computer and then rest in power chair
• 12:45 - Online Chat on MSFUNCHAT MIRC UNDERNET
• 2:00 - Rest in bed, snack, watch TV
• 3:00 - Get up, on computer
• 4:45 - Dinner
• 5:15 - Rest in power charir
• 6:00 - BM with help by Elizabeth
• 6:45 - On Computer
• 8:30 - Prepare for bed
• Tuesday and Thursday, Massage Therapy; Once monthly Shiatsu and Acupuncture. Sun 7 P.M. Chat on my site

A home health aide, Pauline, comes Tuesday and Friday to help me while Elizabeth goes out. She feeds me, brushes my teeth, helps me on the computer, uses the ceiling lift to put me in bed and anything else I need

1984

Noticed weakness in summer heat while assembling sailboat at lake. Knee gives out while skiing. See doctor, have physical therapy for knee.

1985

Knee continues to give out causing occasional falling. Unsteady gait.

1986

Difficulty walking without staggering, loss of balance.   See an orthopedic doctor who suspects MS, refers to a neurologist.   MRI and spinal tap are consistent with multiple sclerosis.  Diagnosis: probable MS.  No eye problems. Started using cane.

1987

From 1987-1990, did regular exercise twice weekly at local rehab facility.  Using cane & walker, ankle brace.  Right hip weakness & pain.  Leg pain.  Short term memory problem.   Tried Symmetrel for fatigue, caused depression, stopped.  Prozac for fatigue & pain. Transitory symptoms: unpleasant sensation on hands & forearms, rectal spasms.  Saw Dr. Kenneth Johnson, U. of Md. Hospital, concurred with chronic progressive diagnosis, said bladder problems were possible in the future (prophetic!).  Started seeing counselor to help cope with MS.

1988

Saw Dr. Tenser at Hershey Med Center MS Clinic, he is a leading authority in MS.  He rated it as a 2 on a scale from 0-9 with 9 being bed-bound.  Had PT evaluation at rehab hospital, showed marked weakness right hip, poor balance response.  Trip to Pinegrove Resort Ranch in NY, July, with family.

1989

Discussed biofeedback, for pain, with counselor, no luck with it.  Trip to Florida to visit wife's home town near Miami.  Discussed using a cane or not with counselor, worry about what others think (especially father).  Also discussed learning limits.

1990

Bad fall down steps, fractured rib, deep cut in arm, had stitches.  Also bruises & scrapes.   Falling frequently.  Trip to Germany, February, 1990, to see daughter who was an exchange student there.

1991

1992

Jimmie Heuga Center, October.  Began having massage at local therapist office, later he came to the home (his office was upstairs, too difficult to climb).

1993

Reglan as needed for rectal spasms.  Lioresal for leg pain, no help.  Saw physical med doctor, had PT evaluation.  Started BVT, got bees in the mail, later got an indoor observation beehive.   Did bee stings every other day for 3 years.  Saw a doctor in Maryland first to get injection of BV to check for allergic reaction.  Joined local beekeeping group, went to meetings.  Started using magnets for pain: bed pad, shoe inserts, etc.  Started using Rascal 3-wheel scooter.   Moved to different house, all on one level, previous house was bi-level, had to use stairs.   Trip to Colorado, July, Adventures Within, rafting, with step-son.  Trip to Colorado, February, Adventures Within, with friend.

1994

Paxil for pain, fatigue.  Levsin for urge incontinence, sublingual, used as needed (rarely).  Betaseron for 5 months, stopped due to bad side effects.  2nd MRI consistent with MS, not much change from first one.  First saw urologist for urge incontinence and impotence.  Tests on bladder were done as well as cystoscopy in hospital, found "irritable bladder."  Ditropan tried but it lost effectiveness after a while.  Trip to Israel with daughter, April.  Trip to Jimmie Heuga Center, Colorado, December.

1995

Saw a nurse specialist in incontinence for counseling, helped somewhat.  Began taking private yoga class at local doctor's office, later yoga instructor came to home for visits.   Started seeing chiropractor twice a month.  Trip to Colorado, March, Adventures Within, skiing, with son.  Trip to Colorado, July, Adventures Within, with daughter, canoeing.

1996

Started hydrogen peroxide IV treatment with doctor in Maryland, then switched to doctor closer to home.  DHEA for several months.  Got indoor pool, a PT came to house to design pool exercise program.  Took Qi Gong class.  Got Jazzy scooter.  Made out Living Will and gave wife Power of Attorney.  Started a group of people with MS (& significant others) to meet at my house monthly, lasted for several months.  Looked into getting a service dog, went to meetings, demonstrations, eventually decided against it.  Got conversion van with ramp & hand controls (November).   Trip to Tucson, December.  Trip to Colorado, February, Adventures Within, skiing, with friend.  Trip to Colorado, July, Adventures Within, with niece, canoeing & ropes course (rafting was canceled due to high river level).

1997

Effexor for fatigue and pain.  Neurontin for leg pain, no help.  Muse for impotence, did not work.  St. John's Wort for fatigue, depression - not strong enough (did not take while on other antidepressants).  Started acupuncture with an M.D. (former anesthesiologist)  Sleep apnea diagnosed, got mouth guard from dentist, it helped.  Went to local hospital for training course in driving with hand controls.  Planned trip to Atlanta with friend, canceled, was physically not up to traveling. Trip, Adventures Within, with daughter, skiing, February, Colorado.

1998

IV Solumedrol at Hershey Med, first treatment for 7 days straight, then monthly for 3 months - no effect.  MRI done while in hospital, no increased lesions noted (neuro said lesions are most likely in the spine).  Tried Copaxone in June, bad reaction after 8th injection, stopped.  Tofranil for urge incontinence, caused weakness, upset stomach)  Viagra for impotence, did not work.  Paxil for fatigue, pain.  Sinemet CR for restless legs while sleeping, took 7 months.  Urge incontinence worsening. Kept urination diaries in preparation for urologist visit at HMC to discuss surgical implant of artificial sphincter to treat urge incontinence.  Test were done, told I was not a candidate for this procedure.  Visited clinic Incon Therapy, was told not a candidate for this therapy.  Had trouble reading, neuro found INO (internuclear opthalmoplegia) & nystagmus.   Persistent perianal dermatitis.  Started hypnotherapy for pain management & relaxation.   Planned trip to Tucson with a friend, canceled at airport when plane was delayed, connections changed (also having some physical problems at the time which made sitting for long periods uncomfortable).

1999

Paxil for fatigue, pain.  Got standing frame.  Got lift chair recliner.  Got Permobil electric wheelchair.  Personal trainer came to house for 5 weeks, taught strength training for upper body.

2000

Desert Adventure, Tucson, AZ, January, with son.  Chin-up bar over pool.  Due to increased difficulty swallowing liquids, I saw a speech therapist who gave me tips how to swallow better.   (1) Chin tuck: make sure to tuck the chin down toward the chest while swallowing.  (2) Water is the hardest thing to swallow because it has no flavor; the therapist said there are flavor sensors in the mouth which help the swallowing function.  I would often swallow & choke, setting off a coughing fit.  My wife worried about aspirating liquid into the lungs.  We spoke to a pulmonary therapist who showed us some exercises to help lung function, and my yoga teacher demonstrated how to do deep breathing.  Lung function is below normal so it's important to be careful swallowing (not aspirate) and do the lung exercises to avoid getting lung infections and/or pneumonia (sedentary people are more at risk for these problems).

In January, blood tests showed high cholesterol.  Started taking garlic ("Garlique" brand).  Six months later, cholesterol was down, LDL down, HDL up.  Doctor said continue garlic.  Because of increasing bowel problems, enemas had to be used more frequently.  We read an article that said using enemas was bad for the bowel.  We went to see a GI doctor to discuss this; he said enemas (or even digital enemas) were no problem at all, not to worry about it, so that was a relief.  Had been using glycerin suppositories for a long time but they were not working anymore.  Tried the "Magic Bullet" suppositories but discovered I am allergic to the ingredient in it, almost fainted. 

In May, (Memorial Day weekend) the urinary tract infections (UTIs) started.  At first we didn't recognize it as that, thought it might be the flu. Fever, nausea, vomiting, urinary frequency, a little burning.   Very sick, too weak to move.  Doctor prescribed Cipro for the possible UTI and Tigan for the vomiting.   I slowly recovered but it took a week.  There were several times my wife almost took me to the ER.  With the fever, my hands kept going numb, which slowly improved.  Got a rash in the groin, probably yeast infection from taking antibiotic, used prescription med on it.

In June, another UTI (Father's Day).  Suddenly a lot of bright red blood appeared in the urinary leg bag.  We went to the ER, urinalysis showed blood & infection.  The doctor thought I might have a kidney stone.  He prescribed Bactrim DS and said they would do a culture.  Had a more mild fever with this infection.  After the culture, my urologist put me on Levaquin instead of Bactrim.   Got another groin yeast infection/rash due to antibiotic.  My wife started to worry about any holidays coming up since both UTIs happened on holidays. 

However, July 4th passed without a problem.  BUT, July 17, blood in the urinary leg bag again.  Went right to urologist's office & was put on Levaquin again.  He ordered an X-ray and ultrasound to look for a kidney stone.   No fever with this UTI but had weakness & fatigue.  X-ray & ultrasound were inconclusive, showed possible stone, so a CT was done which definitely showed a stone.  Before we could return to the urologist for follow-up, another UTI with blood started August 23.  The doctor put me back on Levaquin and lithotripsy was done the next week on August 30. During the procedure, the doctor saw two stones & it appeared that the procedure was successful in breaking up the stones.  Labor Day passed OK, still on antibiotic for a while following the procedure, had blood in the urine for 5 days afterward.

2001

Around the end of last year and into the beginning of this year, I began to have choking and coughing spells.  My wife figured out I was choking on saliva.  It was worse at night while sleeping, because I lie on my back.  We called our swallowing specialist who helped us before with my problems swallowing liquids.  She said choking on saliva is a common problem in progressive MS.  She advised keeping the lips together, because when your lips are apart, you can't swallow.  If your mouth is open and saliva pools in the mouth and throat, you can't swallow it and will choke on it.  She also suggested sucking on hard candy and chewing gum.  As for choking spells while sleeping, she advised lying on my side as much as possible.  I had another illness with fever in January, probably another UTI. 

We were discussing my fevers with my GP at a check-up.  He told us about some products that would be useful for anyone with MS who gets a fever with vomiting.  First, there are Tylenol suppositories for adults.  We didn't know this.   Also, there is something called Rehydration Solution for adults. (It's like Pedialyte for kids who have fevers.)  We had been using Gatorade but this stuff is much better, has less sodium.  Both these products are OTC so any pharmacist should be able to get them.

In April, the UTIs finally cleared up and I entered an MS plateau that has extended, so far, into December.  No significant worsening of MS symptoms has occurred.  The neurologist confirmed this and said I could wait a year for the next visit, instead of the usual six months.  No one can tell how long this plateau may last. 

In June, I started a new diet to try to lose the 20 pounds that came with the IV Solumedrol treatment a couple years ago.  We called the dietitian at the local hospital who we had consulted before.  She figured out the amounts of calories, proteins, carbohydrates, fat and fiber a person like me in a wheelchair should have a day.  My wife kept track of the diet.  As of December, I have lost five inches around the waist and about 10-15 pounds.  It's difficult to stand on a scale so that's an approximate weight loss. 

We had a ceiling lift installed in November.   We don't use it all the time now, but it's a relief and a comfort to have it, especially for Elizabeth.  Now she can move me easily and safely with the lift.

2002

In the first few months of 2002, I had recurring skin infections with yeast and ringworm.   The doctor prescribed creams in the past which we use as needed.  My skin is prone to breakdown and infections take hold quickly.  I lost some sensation in bowel/colon, can't tell for sure when need to have BM.  Went to my nephew's bar mitzvah.  Hired a driver for the two hour trip in my van.  Ended up sitting for seven hours in wheelchair, got skin irritation and breakdown, started the prescription cream again.  The skin problems can start in hours and take several weeks to clear up.

In April, Elizabeth and I both got very sick with colds and sinus infection.  I took two rounds of different antibiotics.  Had a fever which made me very weak, as it does for most people with MS.  I was not recovering very well so Elizabeth took me to the doctor.  In our driveway, the van died.  She helped me into her car and put the manual wheelchair in back.  But at the doctor's office, I was too weak to transfer into the chair with her help.  A large, strong doctor came out and helped me into the wheelchair.  From this experience, we learned we need a back-up plan for when the van breaks down and I have to go somewhere.  We are going to practice with the Invacare lift to see how it works to get me into Elizabeth's car and take the lift with us (it comes apart) to use at our destination.  It takes a little longer but is safer for all involved.  The trip was worth it, as I was given a much stronger antibiotic and finally started to get better. 

Due to the antibiotics, I got oral thrush.  Our nice doctor called in prescription for a rinse which helped a lot. Elizabeth also got some acidophilus pills at the drugstore to chew and had me eat small amounts of plain yogurt throughout the day.  She learned this from her research on the Internet about treatments for oral thrush.

In May, I went to the annual weekend get-together, the Red Boa, in Connecticut.  We all had a great time.  I smashed my knee into an elevator wall, the condom cath came off during the night, and I got a bad case of athlete's foot, but overall it was well worth the effort involved to go.  My massage therapist and his wife drove me there and helped me at the motel.  Now that we have been having warmer weather, I like to lie out in the sun.  I can't stay more than about 20 minutes or the heat makes me weak.  I cannot sense getting too hot and I don't sweat.  Others with MS have told me they have this problem too.  So we have to be careful not to get overheated.   Some people can't tell when the shower water is too hot or a heating pad is burning them. 

The last half of 2002 did not bring any serious problems.  I had many skin infections such as athlete's foot, yeast, and ringworm on various areas including feet, arms, groin, penis, and perianal.  These have been chronic problems over the years.  We treat them with various antifungal medications, both prescription and over-the-counter.  Skin tears are also a problem (especially in the groin) and we put antibiotic ointment on those.  We have found from talking to other people in wheelchairs that groin skin infections are very common in our situation.  Daily cleansing and using cornstarch powder helps to keep the skin healthy.  My regular acupuncture doctor retired and I started treatment with a new one, also an M.D.  His procedure is very different but I believe it continues to help fight pain.  Toward the end of the year, bowel became a problem due to a bleeding hemorrhoid.   We had been doing digital enemas since I am usually unable to go on my own.  In order to avoid irritating the area, Elizabeth found a product that really helped.  It is called Fleet Liquid Glycerine suppository.  It looks like a mini-enema but contains glycerin instead of water.  It is less irritating than water and contains much less volume than a regular water enema.  With this product, my bowel program usually takes only about 15 minutes a day and requires very little digital stimulation.

2003

January. My new acupuncture doctor recommended a soapless skin cleaner for the groin skin, called Pro Shield. It works very well to clean and protect the skin and aids healing.

February - March. A lot of bowel problems. Cramps, gas, a lot of discomfort. Large BMs followed by loose stool. Tried various OTC meds with some temporary relief but problems persisted. Decided to try eating every couple hours throughout day and cut down size of regular meals. This will hopefully stimulate bowel enough to keep things moving on a regular basis and avoid the fullness and bloating after large meals. This seems to be helping the problems a great deal. We think the bowel problems are at least partly MS related.

March. UTI with blood in urine. Had a little pain when urinating, no other symptoms. Started Levaquin which we had on hand. Doctor gave us more and did culture which showed infection, continued Levaquin for 10 days total. April. Noticed problems with my hands. By the end of the days they were stiff and I could not straighten the fingers out. My massage therapist showed me a hand and finger exercise device in a catalog and I started using it daily. Within a few weeks, I was able to straighten my fingers and had less stiffness. (The device is called Handsizer.)

April. Had regular annual urologist visit (prostate check). No UTI at this time. Discussed ED (erectile dysfunction). The uro said there is nothing new available right now but he thinks some meds in Europe will be in the U.S. soon, similar to Viagra. He gave me a new prescription for Caverject which is effective sometimes but not always.

March - April - May. More athlete's foot, a chronic problem. Using Naftin gel, prescription. Family doctor gave me Penlac, a prescription med for toenail fungus which is used like nail polish. It can take 6-12 months to work. I wanted to avoid the side effects from the oral meds for this problem. We think these chronic skin problems are at least partly MS related, because MS lowers your immune system response to invasion by bacteria, fungus, and all germs.

May. Over the past several months, have had an odd symptom. I feel like I am urinating but nothing comes out. I've asked Elizabeth to empty my bag and there is nothing in it. It happens occasionally. Now I had a sensation of sweating and there is no sweat. She felt my underarms and robe and there is no moisture but I feel like I am sweating a lot. We call these things pseudo urination and pseudo sweating. We think it is probably related to nerve problems due to MS.

Summer. Had a lot of skin infections such as athlete's foot and perianal and genital yeast infections. Luckily the topical prescription meds cure it but it takes a couple weeks with each recurrence of infections.

September. UTI, got on Levaquin antibiotic. Very bad UTI with weakness and vomiting. Used Tylenol and anti-vomiting suppositories (prescription) and gradually felt better. Took antibiotic for 18 days, per urologist. Extended antibiotic use caused flare-up of skin infections.

December. UTI with blood in urine. Got on Levaquin again. Skin yeast infections continued on and off.

2004

March. Had some skin lesions removed, surgery sites very slow to heal. Common problem in people with MS. Family doctor prescribed a cream for burns, Silvadene, which helped some. Also had extra needles placed during acupuncture treatment to aid healing of the wound.

April - May - June. Had several bouts of yeast skin infections which cleared with Terazol 7 cream (prescription). Also recurring athlete's foot, use Naftin gel (prescription).

Saw family doctor for annual checkup. He prescribed Silvadene cream to help heal large skin surgery site. Started Pravachol for high cholesterol.

Started using Stridex Maximum Strength pads on scalp to help prevent pimples, it seems to work. Had some nosebleeding. Used vaseline and other moisturizing cream and increased use of saline nasal spray to 4 times daily instead of twice.

Had nosebleeding several years ago and had cauterization by ENT doctor. This time bleeding did not recur.

Saw my physiatrist (physical medicine doctor, sometimes called rehab doctor). I see him every few years to keep track of the MS progression. He was very complimentary about my flexibility and lack of spasticity. He said to continue my program of pool, massage, standing, bike, acupuncture, yoga, etc. He admired my Permobil wheelchair and said it was one of the best chairs on the market.

July - August. Got fever for a couple days, with severe weakness. UTI home test strip was negative, no urinary symptoms. Rested and ate lightly. Drank rehydrating liquid (similar to Pedialyte).

Skin tear/split in one side of groin. Probably due to stretching of leg during massage therapy. Put antibiotic ointment on it twice daily, asked massage therapist not to stretch leg so far for awhile. It took 2 weeks to totally heal.

September - December Had two UTIs with blood & fever, recurring skin infections (yeast, athlete's foot, diaper rash). Saw neuro who says I am "stable" since last year, which is good news to us. Tried taking Bactrim DS half dose for 50 days to see if it would prevent UTIs. Seems to have worked. Got flu shot. Had some small red spots on rear end, put cream on them several times a day and they got better.

Increasing difficulty with finger dexterity: grasping and holding things, and typing are harder to do. Got Dragon Naturally Speaking 8 Voice Recognition to use on the computer so I don't have to type as much.

2005

January - February. Recurring boils on scalp. Tried several creams from dermatologist, nothing helped. Wiping with alcohol three times a day helps heal and prevent them. Because MS suppresses immune system, I am more susceptible to skin infections. Skin problems are common in people with advanced progressive MS.

April - May UTI started with blood in the urine and pain. Had fever, weakness. Culture of urine was done and Bactrim DS prescribed for 2 weeks. After 12 days, was having more spasticity and not feeling well. The uro said OK to stop Bactrim DS. Got very bad skin rash in groin from taking the antibiotic. Tried numerous meds, prescription & OTC for weeks before it cleared up. Acupuncturist recommended tea tree oil for athlete's foot, it seemed to help. If very bad, we use Naftin prescription cream on it.

June - July - August Started noticing more hand tremors in the morning. Hands are very stiff upon wakening. Fingers tend to curl inward toward the palms all the time. Weakness in hands and fingers increasing.

September I had been more tired than usual for a few weeks. On September 15th, my body went into a total spasm when I got into the therapy pool. I was lying face down in the water and could not move. Luckily Elizabeth was nearby and pulled my head out of the water and got me out of the pool. She put me into bed. There was a slight fever, I felt very cold, and could not bend any joints.

She gave me some Tylenol and one of the antibiotic pills we keep on hand for sudden UTIs. A nice neighbor took a urine specimen to the urologist for us since Elizabeth didn't want to leave me. She gave me liquids to drink but I started vomiting. Within an hour I became mentally confused and was choking on liquids.

The urologist's office called to say that the specimen showed infection and to continue taking the antibiotic. They sent it to be cultured.

About two hours later after giving me a Tylenol suppository, Elizabeth was very concerned. The fever was not going down and I could not swallow and I was almost unresponsive. She made the decision to call an ambulance. At the hospital they gave me fluids and antibiotic by IV and I started to regain my mental faculties. They admitted me because my white blood count was very high. At that time, I could not move my hands and fingers at all and was totally weak. I was able to swallow the day after being admitted and my hand function started coming back slowly.

I wanted to go home the next day but the doctor said to wait for the blood and urine cultures. They did some X-rays of the kidneys. My white blood cell count went down enough the next day that I was discharged.

Throughout the hospital stay, my temperature remained above what it normally is. According to the nurses, though, it was normal enough that they would not give me Tylenol. They had no understanding about how any elevation in body temp can adversely affect someone with MS. They also had me in a very hot room which didn't help at all to recover faster.

The hospital was not equipped to deal with disabled people. They didn't have a lift to transfer me. There was no way to get to the toilet, so Elizabeth helped me have a BM in the bed. They had to roll me around to get X-rays and I kept falling back onto the X-ray table. Not too comfortable. I was very happy to get back into my Permobil power chair when I left.

In the hospital I had an in-dwelling catheter. It was not painful but not as comfortable as the external condom catheters I normally wear. It caused some bleeding for the week I had it in, and the doctor said that was normal. My urologist thought I might have had a stricture in the ureter and wanted the catheter to stay in for a week.

My recovery has been slow. I am more tired than before and have to rest more often. We are very happy my hand functioning returned. It's not great but it's better than nothing since I can still move the computer mouse around.

I go back to the urologist in a couple weeks for a repeat urinalysis and exam.

December Started seeing a speech pathologist.  I had seen her in the past when swallowing problems first started.  Now I am seeing her for verbal communication difficulties and cognitive problems.  She gave me some short tests.  My main problems are word finding, and slowness in understanding and responding verbally.  She played Password with us and gave us a Password game to take home to practice.  We saw her several more times and it was helpful.  

Since my hands are not working well, Elizabeth has been helping me more in the shower.  We got a shower chair that tilts since I cannot sit upright without leaning over, even with a seatbelt.  Since we got the chair, it makes it easier for her to give me a shower.  I shower twice a week and go in the pool 3-4 times a week now.  I used to go in the pool daily but since the fatigue is worse, I have cut that down.  I nap more now, too.

2006

January Asked urologist about maintenance antibiotic to prevent further UTIs. He prescribed 3 months of half-dose of Levaquin.

Had some blood in urine, took sample to urologist. No infection found, no other symptoms. Urologist scheduled CT of kidneys. Some blood showed in urine for a week. CT scan showed small kidney stones, not large enough to be causing problems. Uro said wait and watch.

February More loss of hand function. My hands have been getting worse since my severe UTI last September. It is more difficult to grasp and hold onto things and sometimes I can grab but not let go easily. Eating with utensils is hard and Elizabeth helps by feeding me sometimes. We tried other electric toothbrushes since the button on my Sonicare was difficult for either of us to use. The Crest Spin Brush has a much easier on off switch.

Elizabeth ordered voice activated switches (from www.dynamic-living.com) so I can turn lamps on by saying words. We are looking for a better computer mouse. I turned down the speed on mine. My hands get tired very fast. At night I put my hands around a cardboard tube covered by a sock. It's an empty paper towel roll with a washcloth stuffed inside. Otherwise my hands will curl up during the night and it's hard to open them in the morning.

We are doing whatever we can to adapt to my loss of hand functioning. It is very frustrating. Acupuncture and massage therapy help for awhile after the treatments.

March A small amount of blood in the urine for a few days. No other symptoms.

Finished 3 months of daily half-dose of Levaquin. Uro said I could continue the Levaquin every other day or every two days if I want to, which I do.

May Again, a small amount of blood in urine for a few days, no other symptoms

June - July I was sleeping more and more so decided to try Provigil, a prescription med. It helped and after adjusting the dosage, I am taking 2 naps a day instead of three.

August.My wife noticed a round, red area on my butt. She put creams on it but it didn't go away. She started putting Duoderm on it (a special skin dressing) and that helped. It protected the area. It took weeks for it to completely go back to normal.

September - October Looking forward to celebrating one full year without a UTI in November. Have been taking a half daily dose of Levaquin antibiotic to prevent UTI and I think it is working.

November - December I tried an alternating air pressure mattress but didn't like it so Elizabeth took it off. I might try it again in the future, if I'm spending more time in bed.

2007

January - February Saw a new neurologist. Decided to find a new one since the old seemed bored with me and did not bother to do a complete exam anymore. The new doctor was very nice and suggested I try Aricept for memory and concentration problems. She also suggested stopping Provigil. After a few weeks I stopped Aricept due to side effects. It did not seem to be helping cognitive problems anyway.

Had a couple episodes of a little blood in the urine. No other UTI symptoms and test at urologist showed no infection. I continue to take Levaquin 250mg every 2 days to help prevent UTI.

My alternating air pressure seat cushion on my power wheelchair failed. We've been having a lot of trouble with this cushion so decided to try something different. I got a ROHO Quadtro Contour Select.

March - April I had a red spot on the side of the butt so Elizabeth put cream on it several times a day. When it did not improve, she put Duoderm on it for a couple days and that helped it heal. The skin was not broken. We use Duoderm Extra Thin Hydrocolloid dressing. The redness keeps returning in the same spot so she checks it a couple times a day.

I saw my family doctor who said my lungs were clear and I looked good. She told me some ways to help expand my lungs more. When I lean forward and hold onto a rail, I should take a deep breath. Also do deep breathing when lying on my side holding the bed rail. Elizabeth has to help me lean forward or roll onto my side. The doctor said aspiration pneumonia is always a concern for people with my condition, meaning advanced progressive MS with difficulty swallowing.

I saw my physical medicine doctor (physiatrist) and he prescribed some OT (occupational therapy) for my hands. Ever since my hospitalization for a severe UTI with high fever in 2005, my hands have been weak and getting worse. I cannot feed myself and do many other personal tasks anymore. A high fever has always caused an MS progression and loss of some functioning that does not return.

I have had several OT sessions at the Rehab Department of our local hospital. Now here is a place that is TRULY accessible!

The therapist recommended a change in my wheelchair controls: replacing the push buttons with toggle switches that are easier to move. That does make it easier.

She showed us a device that holds a telephone receiver up by my ear, and a flip switch to get dial tone and hang up. Using a phone was getting impossible for me until we got this device.

Also during this time period I got a new acupuncturist who comes to my house. She is a caring person who makes us feel very comfortable. She is working on my hand problems as well as other usual progressive MS symptoms. We are both very glad we found her. I've been getting acupuncture treatments for many years and believe it helps me a great deal.

October - December Had some blood in the urine after the catheter tube got kinked and the urine backed up, causing pain. The next day it was fine.

Had some minor skin surgery and was able to stay in the Permobil power chair during the procedure. The doctor said my chair was as good as the exam chair because of how it can recline, tilt, and elevate.

Occasionally battled yeast skin infections and used vaginal yeast infection creams to treat them.

In November, had a week of fecal incontinence along with lots of gas and bloating. Not sure what it was from, felt fine otherwise. Ate a light and bland diet and it finally improved. We were worried it might be a permanent problem and had the discussion about colostomy again. We've pretty much decided that if fecal incontinence because a major problem, I would get a colostomy.

2008

January - April In January had another bout of fecal incontinence for four days, no other symptoms to indicate what is causing it. Went on a soft diet and stopped the Levaquin antibiotic I take every 2 days to prevent UTIs, in case that was the problem. Re-started it after a week.

My hands continue to get slowly worse. I can use the computer mouse but not the keyboard. I use the onscreen keyboard available in Windows XP. (Start button, programs, accessories, accessibility). Also I try to use Dragon Naturally Speaking voice recognition but it doesn't work too well for me. Elizabeth has ordered a big button controller for my hospital bed. She got me a speakerphone without a handset. I press one button to answer or make calls.

Elizabeth taped a metal bar to the buttons on my Permobil so I can turn the power on and off easier. Instead of using one finger to press the power button, I can push anywhere along the bar to turn it on. I can still drive the chair fairly well if I'm not too tired. Usually she drives my chair for me.

I've noticed I lost my sense of taste. I know people with MS sometimes get this problem. It doesn't bother me very much. I saw an ENT and he said there is not much you can do to treat it and that it's often related to the sense of smell. I didn't want to pursue that by having tests right now.

May - December The usual problems such as intermittent constipation and diarrhea, and occasional low-grade fevers.

2009

The urologist did a urine culture and found out that the antibiotic Levaquin I have been taking for several years to prevent UTIs is no longer effective. He gave me prescription for Macrodantin instead and I am taking one every two days. A skin yeast infection in groin area cleared up in a few days with topical anti-fungal med and powder.

2010

Discovered I have diabetes. I was told there is a higher risk among people who are severely disabled because the blood sugar is not metabolized properly. The doctor wants to monitor it and treat with diet modification, no medication yet.