sunflowery's Diaryland Diary


Mobility For Independence For Bob

It is 90 degrees and humid outside today but my office might as well be the Arctic Circle for as cold as it is. I feel as though ice cycles could form off the end of my nose any minute now.

Bob had his annual appointment with the MDA neurologist yesterday. He sees this doctor once a year to gage the progression of his disease and get new information. He said he was dreading it this year because he knows the FSH has progressed so quickly. It has gotten to the point where Bob has been having trouble getting utensils to his mouth while eating. He is also having difficulty swallowing and is having horrible acid reflux due to the weakness of the duodenum. This visit, he not only got to see his MDA doctor, but he talked with a speech therapist about his facial and throat muscle weakness, a genetic counselor about our desire to have children, a physical therapist, a nutritionist, and several residents and nurses. The doctor said the left side of Bob’s facial muscles have deteriorated more rapidly than the right side. However, the left side of his body is stronger than the right. He has little to no scapular muscles at this point, which is what makes it impossible for him to lift his arms much at all. His pain is normal due to his muscles degenerating and leaving his bones and joints to rub on each other. The doctor told Bob that he should use his chair whenever he needs to walk long distances, but that short walks to and from the bathroom, bedroom, kitchen and standing as he is able, will help his bone density and strengthen the muscles he does have.

Bob ended up leaving his appointment feeling strangely hopeful and buoyant. His doctor told him that his attitude makes him markedly unusual, considering his circumstances. Bob went in with a positive, upbeat attitude and ended up lifting the spirits of his doctor, a couple patients, and a couple nurses. He even asked if there were volunteer opportunities at the clinic because he would like to apply. This is JUST what he needs. He needs something to give meaning to his life, something to look forward to. My only concern is that he would need transportation…and that is where the van comes in. And speaking of the van, that is where we need YOUR help.

I know I have already asked for help on and posted this, but the more people that write in, donate, and help…the better. There are two (I am sure more) ways right now to help Bob get a wheelchair accessible van. The first is by contributing to or attending a fundraiser Mobility for Independence is having on August 21, 2005. Mobility for Independence is the only nonprofit organization in our five-state region that is dedicated to improving the lives of individuals with disabilities by helping provide a means for them to become more mobile. Those individuals that Mobility for Independence can benefit will go on to live a more fulfilling personal and professional life and have a crucial impact within their community. Bob is one of three keynote speakers at their fundraiser this year. The dinner part of the fundraiser is going to be at Treasure Island Resort and Casino on Sunday, August 21, 2005. There is also a golf outing fundraise on Monday, August 22nd.

Part of our responsibility is to raise matching funds on Bob’s behalf. Therefore, if Mobility for Independence raises $10,000, we should be gearing up to raise that amount in Bob’s name as well. Then all of that money is put into a grant and given to the auto dealer of our choosing in order to purchase a van. Anyone who donates to this charity in Bob’s name should know that those funds would go directly into a fund for Bob specifically towards his matching funds. All the details of the fundraiser can be found here.

The second way you can help Bob get a van is by writing to the upcoming NBC show “Three Wishes”. This is a show, hosted by Amy Grant that will grant one wish for each of three people in a community. We would like to see everyone who sets eyes on these words to write in on Bob’s behalf. Here is the link to the application form. When you fill it out, please note that we are in the Minneapolis region of Minnesota. In addition, they ask for a photo of the applicant, so I am linking one of our Snapfish albums that contain several of Bob. Save one to your computer and attach it to the application. If you want to know more of our story in order to submit it on Bob’s behalf, here is a link to the story more or less (you can also go to March 8, 2004 in my archives and click on that entry to read the story). If you need more details, please email me. Write in your own words why you think Bob should be granted his wish of a van.

If, in the unlikely event, we are granted the van AND raise all the money at the fundraiser, we will donate the Mobility for Independence money to another needy soul. There are at least 200 people on that list waiting for a van. We have been on their list for over 2 years now and know that the need is great. In fact, we passed MfI’s contact info on to a young family that just found out their only child (a deceptively active 6-year old boy.) has Duchene’s MD and will, in all likelihood, need a van in the next 3 -5 years themselves. We would be happy to help them get the funds they will need for a van as well.

Please do me one more favor. Please pass this on to everyone you can think of that might want to help. Link to it in your blogs and journals. Heck, print this letter out and mail it to everyone in your address book. I do not care. My husband needs this in order to stay active and independent. He needs to find ways to stay involved in life and to find meaning. Just think if you were no longer able to work full time and someone took away your ability to walk, run, jump, stand, and move. What if you felt you could no longer contribute to the welfare of your home and community? What if there was something out there that could make a big difference, but it was just out of reach? Wouldn’t you want someone to champion your cause? That is what I am doing for my husband.

I have to say that I am so very thankful for my job. As the primary breadwinner for my family, I carry a burden on my shoulders I had never had to deal with in my single years. The insurance we get through my job helps pay for Bob’s doctors visits and durable medical equipment. My 401K plan helps us save for retirement. My paycheck helps pay the bills. The tuition reimbursement program helps us keep my student loans down. Even though I carry the bulk of the financial burden, I am fortunate enough to have a job that helps me carry it all. I hope that once I graduate with my Bachelor’s in Communication, I can move up in this company, to a better job with better benefits. We have so much to be thankful for and that is what I really need to remember.

Thanks for your prayers, your encouragement, your correspondence, and your friendship. We love you and wish the very best for you.

6:56 p.m. - Wednesday, Aug. 03, 2005


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