Kim and I spent an exhausting morning at the Hershey ALS Clinic today, but came away with some good news. We arrived at 8AM and finished about 12:30. We were both starving because we didn't eat anything before we left home. We had a nice lunch at Panera's in Hershey before driving back home and then going to work.
The clinic is designed as a One Stop Shop. We saw the following:
- Respiration Therapist
- Head Nurse
- Pastoral Nurse
- Research Coordinator
- Speech Pathologist
- Nutritionist
- Nurse Counselor
- Phlebotomist (Blood Draw)
- Physical Therapist
- Dr. Simmons
The only person we didn't see who is usually at the Clinic was the Social Worker. Her daughter graduated from kindergarten this morning, but she had called me last week to talk.
We received information about text to speech programs for the iPad, which I will start exploring.
The Hershey ALS Clinic staff are a great team! We didn't sit for very long before the next person came in to talk to us, and Tammy and Sue were in multiple times to see if we were okay and needed or wanted anything. Everyone was very sympathetic, kind, caring, and professional. They talked to both of us and made sure that all of our questions were answered.
When I asked how many ALS patients they served, they indicated about 200, covering the area between Pittsburgh and Philadelphia where there are other ALS Centers. That is a lot! The average number of new ALS cases in the United States each year is 5000.
They talked to us about some of the ALS research. The Boston BrainStorm Stem Cell research project just got off the ground. Dr. Simmons is involved in a lot of research and is world-renowned. His staff can't say enough good things about him!
First and most important, my lung function has not diminished in any way so far. I am at the normal/average range for a man of my age and weight. That is one of the most important things with ALS.
Second, while my swallowing has been impacted, it is still very good, and they have no concerns at this time, just make sure not to choke or aspirate food or liquids into my lungs.
Third, they think the Lorazepam will help with my morning gagging/choking. I haven't filled the prescription yet but will do so. Just since we went to the Clinic this morning my throat feels more relaxed. I think part of it has been panic/stress.
Fourth, the doctor says I can drink one cup of caffeinated coffee every day and can have an alcoholic beverage also, contradicting the information in the Riluzole medication document. I will have a monthly blood test to monitor how my liver is doing. Let me tell you, Kim is VERY relieved to hear this news. :)
Fifth, they want me to increase my calorie intake to 2700-3200 calories per day to maintain my weight. I get to eat more and not worry too much about it. My internist has been trying to get me to lose weight for several years.
They will see us again on September 10 at the next clinic, and we have staff phone numbers and emails if we need to contact them in the meantime.
Kim and I both were nervous this morning about what we might find out, but both felt relieved to gain a better standing of the disease progression and some of the good news above also.
A big THANK YOU to everyone that has signed up to walk with Kim and I on June 7 for the Hershey ALS Walk for the Cure and to everyone that has sponsored us with their financial support! Together, we can find a cure!
I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2018, my symptoms started out with a “foot drop” on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2019 i started using Peter ALS Herbal formula treatment, I read a lot of positive reviews on their success rate with the ALS Herbal treatment and I immediately started on the treatment. Just 10 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than I'd thought I could ever be again. having similar symptoms? send a message to them at peterwiseherbalcenter@gmail.com or WhatsApp Dr Peter directly on +2349059610643 . The fatigue and general muscle weakness had also declined, this treatment is nothing less of a miracle!
ReplyDelete