Mixed Bag

Oy!

Hubby is improving. It’s been nearly four months since his first infusion. The tingling in his arms has reduced and is now from the wrist to fingertips. Next infusion is just before Thanksgiving.

I had my caregiver break courtesy of my step kids. I had six days home to see family after three years. I rested one day while I was there.

I have requested medication for the stress from Doc. Yesterday I had severe anxiety. I just don’t fully relax even though he’s doing well.

We’re getting estimates for an accessible bathroom so Hubby can roll right in. We also need new windows. Most of the decisions will be on me for the bathroom. I’ll have a 30 mile drive to their showroom and I’ll take pictures so we can make most decisions together.

This girl is overwhelmed. Being an MS caregiver is tough enough without any extras on my mind.

One day at a time. Adjust. Adapt. Breathe.

A Bit of Hope

Hubby had a neurology appointment today. His last “visit” was the video call which did not come through clearly. Since that call, he has had the lumbar puncture, diagnosis of MS and his first infusion.

Today, Hubby explained how he’s been feeling since the infusion. We had a list this time. He now has a prescription that should help with the spasticity; what we refer to as rigor. He should be able to sleep better at night and the muscles that are strained so badly when he rigors will have a chance to heal.

He could not lift his bad leg, but Doc could see the muscle trying to work. Doc was very encouraged. Hubby is on track this early into treatment and he seemed excited how much better he’ll feel after the second infusion near Thanksgiving.

Hubby is tired now. The weather heated up in the afternoon, but he felt good. Doc told him to keep his positive attitude. He’ll see us again after the next infusion.

This has been a huge load off our shoulders. We realize there are no guarantees. We’ve had a rough week. Doc had a twinkle in his eye that made us feel we’re on the right track.

An added bonus came from my stepkids and daughter-in-law. They took turns caring for Hubby while I flew home to finally see my family for the first time in three years. Mom just turned 89 a few days before. My son’s birthday is next month. Two siblings were diagnosed with cancer during that time and are fine now. My youngest sister and her family I had not seen in four years. I left a document for the kids here so they knew what to expect. They did well. I think Hubby missed his usual routine. I may not have rested while I was away but I saw my family and that was such a blessing.

Here’s to a bit of hope.

Maybe a Personal Break

My stepdaughter and daughter-in-law are both involved in education so they have most of the summer off.

They have offered to spend three days each with Hubby so I can go home and see my family and get a much needed rest. God bless them. If it comes to fruition, I have begun a document that I can email to them on what is involved in his care. I warned them that they may see and do things that are not what they may have envisioned.

It’s MS. You don’t really know what’s involved until you experience it, either as the patient or the caregiver. We have our routines. He tries to do small things since he is in the wheelchair now. It helps. Having a lift chair also helps us both. He has more freedom and I’m not trying to get him upright from the couch which put a strain on both our bodies.

I’m choosing to drive down rather than fly. It’s 90 minutes to the airport anyway and the more frugal flights are super early or super late. I would then need a ride from the airport back home. If I am able to spend four full days there before coming back, that’s a blessing. I have not seen my family in three years. I’ve not been away from Hubby longer than three hours in two years. He has been in the wheelchair for one year.

Hubby has had his first two infusions. The next one is close to Thanksgiving. The schedule worked out that we avoid snow days. He thinks he’s having some improvement in his hands and feels well over all. The heat and humidity will drain him very quickly. He now has a cooling vest courtesy of MSAA and Polar Products. It even helps his brain fog on those days. Most days are good.

I am less afraid to leave him now than I was last week. I know if I’m able to go the time will fly by and it will probably be tiring, but Mom’s going to be 89 years old soon. Two siblings have dealt with early cancer. I have not seen my youngest sister and her family in four years. I need this. I have been encouraged to do it. I know I need the break. Caregivers can suffer burnout and depression. Depression is fleeting. I’ve seen three specialists in the past year. The last one is for my ear infection.

It’s time for a short break. Hubby is stable as long as he doesn’t get too hot. He knows to get at least eight hours of sleep each night and take naps as needed.

We’ll both be fine. It’s just difficult to leave even if it’s less than a week.

Happy Anniversary to Us!!

Today is our fifth wedding anniversary. Half of our marriage has been trying to figure out what is wrong with Hubby. It’s Multiple Sclerosis.

Our plan was to go out for breakfast today. It was a bold step. We used to go out for breakfast on Sundays at the Diner which is an historic building and not accessible. We decided on the deli across the street from there where Hubby used to stop for coffee before work. I had remembered a ramp. Turns out the little ramp was on the inside of the building. A lady checked the front of the deli for us and said it was wheelchair friendly.

I ordered for us and we chose to eat outdoors. There was a slight breeze, the temperature was lovely and the food was delicious.

This was a huge step for us. Hubby has been homebound for so long except for doctor visits that he was almost afraid to go anywhere. We even checked out the Old Barn by church where they are holding services for June. He’s strongly considering going Sunday even though showing up in a wheelchair bothers him. This is huge. Our lovely day continued as he guided me to fix some things for my garden. He’s now sleeping.

He’s had his first complete infusion. Results are noticeable after 3 months to a year. He is able to flex his left foot. It is easier to stand despite the heat. He has noticed subtle changes in how his hands feel. If his hands come back, he can play guitar. If he can stand, he will have more freedom in and out of the house.

After this very good day, I am hopeful and so is he. Happy fifth anniversary to us!!

Signs of Hope?

Hubby has now had his first infusion. The first one consists of two parts, two weeks apart. He had a reaction during day one but it was quickly cleared with Benadryl. He began with Benadryl for the second part and had no issues. The infusion center which was not available for his first visit due to the elevator being out of order, does not allow for visitors. He had no privacy curtain and the restroom was not wheelchair friendly. I had to sit down the hall. I was able to get him some lunch and they called me back when he needed the restroom. From leaving home to returning home, it was more than six hours.

The infusion process includes an injection of a steroid. He was tired when we returned home but was feeling stronger the next day. He could stand easier and his hands felt better. His energy level has been better also in the past five days. The next infusion is in the fall. The schedule follows a pattern that should keep us out of snow days. It is an hour long drive. We drive home just ahead of rush-hour traffic.

We’re a little more encouraged. He should go into a remission in three months and should have noticeable improvement in six months to a year. I hope it takes the spasticity away. It used to happen after bedtime but now happens during the day as well.

I suppose it may be wise to put off buying a wheelchair accessible vehicle for a while. It’s a guessing game when it comes to getting equipment. Will he improve to where he does not need it or will he remain the same or progress despite treatment?

It stresses me out. I have no one to give me a break. I leave for no more than two hours or so. He can sometimes make himself a cup of coffee but he can’t fix himself something to eat. He needs help with other things and really should not be left alone. Sometimes he forgets to lock one wheel of the wheelchair. Sometimes he has brain fog.

I miss doing things together. I miss my family. Friday will be our fifth anniversary. I love him so much. Sometimes I fear I’ll bury another love of my life. In the meantime, we adjust and adapt and sometimes I cry just to let go of some of the pressure.

Still Waiting But Closer

We finally have the cardiac clearance. It was a huge run around for us and a bit irritating, but it’s now done. Either neuro just received it or it was misplaced in their office. We were assured a week ago that the clearance would be faxed that day to them.

We now await a call from neuro to schedule the first treatment date. He is still in a wheelchair but we’ve adapted to make things easier on us both. We bought a power lift chair with massage and heat online. I put it together. He can now be more upright in order to transition to the wheelchair. His back pain is much less.

He now goes on the deck without assistance. He can reach the bucket of birdseed in case the chickadees come over to his hand. There are activities of daily living that still require assistance. He cannot fix himself a meal and I help him into bed. For now, things are a bit easier. The heat and humidity is wearing him out today.

I received a jury summons today. Yes, I freaked out. There is no one to stay with him if I’m gone that long. It’s for the entire county (80 miles across). The closest court is 20 miles. The other court is more than an hour’s drive and I do not know that area at all. I emailed the court regarding this and they excused me from service without having to have a doctor’s note. I suppose they have a record of his handicapped status. I’m relieved but I’m hanging on to that email just in case.

Yet again, we wait. His PCP is not happy about the wait. He said it’s been three years since he first suspected MS and we’re just now closing in on treatment. The pandemic and search for a vaccine delayed us quite a bit. I pray the treatment halts progression and perhaps reverses some of the damage. It’s again a wait and see situation, but we’re closer…much closer.

Springing Forward

After what seems an eternity, we are on the cusp of being able to schedule treatment for Hubby. The pandemic, primarily, delayed the lumbar puncture which was done in late November. We now know for sure he has Multiple Sclerosis.

His second COVID vaccine is tomorrow. We received a call yesterday from neurology asking when he’d be done. I’m to call them next week so he can be placed on the schedule for the infusions.

The past several days have been great for him. He’s been out for appointments twice this week. We’ve been on the deck four times this week and even had lunch outside. We also held out sunflower seeds for the chickadees and they accepted our offerings.

In about a month we’ll also have a ramp which may work better from the deck and lead to the driveway. If it works that way, Hubby will be entering the car from a level surface. We’re learning.

Yard debris will be picked up April 19th so I have some work ahead but it’s all piled up closer to the road. Time to get the tractor and big wagon going.

Spring has sprung. Time to move forward.

Blessings

Things have been coming together all at once it seems. The portable ramp is two feet too short so it’s secured in a way that he only has to manage one step. We may be able to adjust that from the top just a bit. His son called to say someone was getting rid of their L-shaped ramp. He sent pictures and it looks like it’s a good fit for the front of the house. If it works out, I’d definitely get some solar lights for it. I’ve seen material that provides a nonskid surface as well. He could go straight from the front door to the driveway. Easier on him and easier on me. If we buy the van, it has a push-button ramp. No more lifting the wheelchair into the trunk. He could lay on the back seat to sleep on long trips or sit in the passenger seat next to me. Maybe I could see my family again.

Our last vaccines will be the end of next week. He also has his cardiac clearance and his last gel injection next week. Maybe he can begin treatment in 8 weeks. It’s so much closer.

I’ve had moments of “depression”. I talk to Hubby about it. I think it’s caused by “where the heck is spring”, the pandemic and just so much to schedule in such a short period of time. This journey is nothing if not overwhelming. It’s something different every day. He’s in pain every single day, just varying degrees of it

Hubby wants so badly to walk again and to have the ability to do things he used to do. His hand issues make guitar playing difficult. He’d love to write again, but he uses the guitar to inspire the lyrics.

MS brings with it so many issues which I won’t cover here. For comfort, he’s down to two pair of fleece pants and two flannel shirts that don’t make him feel as if he’s being choked. Last summer he wore swim trunks and tee shirts.

Progress

I’ve been under so much stress lately. I’ve been praying for Hubby and have had others praying for him as well. Seems most of the prayers have been answered at once.

We live in the boonies of Long Island. We’re about 10 miles from the eastern end. The distribution of COVID-19 vaccine is sparse out here. Most of it is upstate or in and around NYC. I have been stressing over the vaccine because Hubby must wait a month after his final dose before he can begin the treatment that could halt and/or reverse his progression. His left leg barely works. Just six months ago he could walk with a rollator. He is now in a wheelchair. A huge thing for him is making his own cup of coffee or planning meals.

Yesterday I finally got through online with Walgreen for the vaccine. I thought Hubby was already working on his appointment as well but he was updating his account so he missed out on appointments. My appointment was scheduled for today. I kept refreshing the page and hours later appointments returned. Hubby’s appointment is tomorrow. Our second appointments are near the end of March so the soonest he can begin treatment will be late April!!

His portable ramp came today. We have to adjust it somewhat but once that is taken care of, he’s willing to get out a little more because it won’t be a strain on him and especially on me. Those are his words.

Labs have been drawn, so cardiac clearance and MRI remain before treatment begins. I am able to relax a little emotionally…just a little. Once everything is scheduled, I can breathe easier. The biggest unknown was his vaccine appointments. Everything is beginning to fall into place.

I was even able to get new tires today so that long drive for the infusions will be safer and I’ll have peace of mind.

A man who works with my sister-in-law may be selling his 2005 wheelchair accessible van with very low mileage and garage kept. There is still a lot to consider. Should Hubby be blessed with reversal of symptoms where he can walk again, we would not need a van. His head cannot go to where he will never walk again or that he’ll progress further.

We still need to renovate the bathroom to make the shower safer. We have a list and a plan. I also plan to have a nervous breakdown because by golly I’ve earned it. I would do it all again for him. I love him so much and am committed to being here for him no matter what. I’m hopeful things will return to a version of normal that allows us to watch a parade, visit his Mom, take a long trip to see my family and eventually return to cooking together. He’s a much better cook.

Whatever is ahead of us we’ll face together. At last we have treatment in sight and I am so thankful!

Stop the World, I Want to Get Off

We are trying so hard to find COVID-19 vaccine appointments on our end of Long Island. Everything through the state thus far is more than an hour away, with most available appointments upstate or around NYC. That’s too much for Hubby.

I went to the next town this morning to drop off registration forms at a local Mom and Pop pharmacy. I found out last month after the fact that they had vaccinated 1000 people. Someone from the pharmacy responded to my social media message on Friday and said to drop off the registration form. I went there and saw signs stating no more were being accepted. I went to pay for the birthday cards I needed and the pharmacist stated the list was quite long but he’d take our applications. I just wanted to cry. I constantly monitor chain pharmacy sites as well as the state site. I’m tired.

Hubby can begin his treatment for Multiple Sclerosis 4-6 weeks after his second vaccine. The pharmacist suggested I ask the neurologist during our telemed visit Wednesday if he knows where Hubby can get it.

I also need to get new tires soon if would stop bloomin’ snowing. Right now it’s raining and snow is melting. Hubby’s lab appointment is tomorrow. It’s a 30 minute drive. He now uses a wheelchair and we have no ramp. I cleared the driveway. I backed into the driveway so the plan is to get him to side-step down the front two steps to a waiting wheelchair and wheel him to the car. Too much snow remains to drive into the yard on the return trip so I’ll have his rollator just inside the front door awaiting him. His former physical therapist would not want to know how we get him in the car, but it is as safe as we can make it right now.

It feels as if things will settle once we get the blood drawn, the cardiac clearance done (don’t know who doc will recommend), vaccines and brain MRI. After all that, his first two infusions will be two weeks apart and an hour drive away. Once those first two infusions are done, it then becomes every six months. The manufacturer is covering 100% of the $10K cost per infusion.

I’m exhausted. I’m tired of winter…the winter that was supposed to be mild but wetter than usual. I don’t sleep well most of the time since pain awakens him and he has difficulty rolling over in bed.

When I returned from the pharmacy, I had to prepare a marinade for dinner and then fix lunch, help him with dressing a little, shovel more snow and put air in that confounded right rear tire. Still have to get the tires replaced soon.

This is more a rant than a post. I did get a call from my son today while I was on the way to the pharmacy. It was good to chat with him. I miss my family so much. If the infusions help him to the point of standing without pain or even walking with an aid, maybe a trip south will be in the cards.

In the meantime, we continue our routine and try to take one day at a time. Hopefully we can find a vendor with our insurance for a portable wheelchair ramp until such time as we know if we will need a permanent ramp.

Whee!